Until ESA is reformed, the rights won by generations of disability campaigners will evaporate

The new Spartacus report proposes an alternative to the broken ESA system.

A new Spartacus report launches today, proposing an alternative to the broken ESA system which fails to support disabled people, either in or out of work

Employment and Support Allowance promised to liberate people by assessing their capabilities, not their disabilities, and giving them intensive, personalised support to achieve their aspirations and lift them out of poverty.

Six years on from its introduction, it is clear the ESA system is a sham.

Take the Work Capability Assessment. Despite all the controversy, the backlog of costly appeals, 43 per cent of which are upheld, the deaths reported in the papers every week of people declared Fit for Work, the government still defends the WCA.

“Looking at what people can do, not what they can’t,”  is the mantra for the WCA. Here’s an illustration, in the DWP’s own words, of the hypocrisy of this statement. Consider their justification of why Case Study 2, (I’ll call her Mary) is Fit for Work and should not qualify for ESA.

Evidence Based Review of the Work Capability Assessment – DWP, December 2013

“Mary” has anxiety and depression. She has had counselling and is on medication which helps but she gets anxious at the thought of going out, and being around people she doesn’t know. She stays in bed most days. However, she does see her friend three times a week, and manages to go out to attend appointments or get food.

She has arthritis in both legs. Standing and walking makes condition worse, but can manage a 10-15 minutes walk to the shops. The severity of her symptoms fluctuates and she is on medication for pain. She has abdominal problems and experiences pain and minor incontinence.

Panel opinion and rationale

‘Mary’ is Fit for Work […] Her conditions would not affect her functioning. Both panels highlighted that Mary would need adjustments: periods of disability leave, and either flexible or home working arrangements. The panels noted that the adjustments she would need are significant, but that she would be capable of some work if these adjustments were available, and that work would be good for her wellbeing.

Sounds reasonable? It’s hard to argue that the dignity and economic rewards of working are not good for our wellbeing. But look further into the ESA system.

You could be forgiven for assuming that Mary’s “significant adjustment needs” would be noted in her case file for when she gets her intensive personalised support from the Jobcentre or Work Programme? Wrong. No transfer of the WCA report (known as ESA85) occurs which would let an employment adviser know what Mary’s needs are, let alone making any suggestions for how to support her into a suitable job. There is no connection between assessment and employment support in ESA.

Beyond the Barriers/Spartacus calls for an integration of the assessment system with a genuine employment support service via a caseworker system that performs well in other countries. Because how else can ESA make sense?

Did you think that Mary might get help from Access to Work – an existing DWP scheme that could pay for extra transport costs or equipment to help her overcome her limited mobility? Wrong. Access to Work is only available to people in work, not to people claiming benefits because they need support to work.

Beyond the Barriers/Spartacus calls for a multi-disciplinary intervention for people whose health or impairment poses a barrier to work. A caseworker system that integrates benefits advice with Access to Work, health services and social care, as well as signposting to education and training opportunities.

Did you perhaps assume that the DWP or anyone at the Work Programme or JCP had a network of ‘Disability Confident’ employers who have jobs lined up that involve a few hours work per week, from home, and only as and when someone like Mary is able to?

Take it from me: they don’t. I’m on the Work Programme – the ESA stream for people who are not Fit for Work – yet when I tell my advisers I could only work under 16 hours per week, from home, and with completely flexible hours, they look at me like I’m asking for the moon. It’s no wonder they’ve only found suitable work for 5 per cent of people on ESA.

Looking at what people can do, not what they can’t: what that phrase means for Mary and the rest of us is scouring our lives any for evidence of our struggle to remain active and engaged and using it to deny us the support to survive.

What galls me the most about Mary’s case is the assumption that Mary stays in bed most days because she lacks the incentive to get up. I can’t speak for ‘Mary’, but I know many people like her, including myself, for whom that struggle to walk to a corner shop to get their own groceries, or that chat with a friend a couple of times a week, are the only things they can do over and above basic self-care.

For the rest of the day they’re bedbound by pain or exhaustion, not out of choice. Sometimes we do these things at the expense of washing ourselves or brushing our hair, because they make feel connected to others and in control of our lives.

Yet because the WCA looks at what we can do, not what we can’t, we live in fear of being seen doing the little things that make us feel human.

If we have one good day in a month and manage to pull a few weeds up in the garden, will our neighbours, (encouraged to police the benefit system), report it as evidence that we’re fit for work?

If we share some beloved photos of a trip we went on before becoming ill in a Facebook group, (because it’s the only way we can socialise), will a Jobcentre spy haul us in for interrogation for being a secret travel photographer, not a sick person?

If we naively tell our Atos assessor, (because we desperately want to be seen as strivers, not skivers), that we manage a few hours’ of voluntary work per week, will that be held up as proof that we’re Fit for Work?

This is not paranoia. These things can and do happen, all the time. It is the cynical reality of what is meant by “looking at what people can do, not what they can’t”.

*  Beyond the Barriers calls for a culture change within ESA towards disabled people, from one of suspicion and adversary to one of trust and partnership. We challenge the assumption that a punishing, penalty based system produces results and call for a whole-person approach that enables everyone to be included.

ESA has decimated my community. On top of the challenges of living with disability we now face a onslaught of fear and despair and an epidemic of self-loathing. We face a twofold battle: one to make ends meet when benefits are being cut on all fronts, and another to resist internalising the image of ourselves as lying, cheating scroungers that comes not just from media but from the staff we encounter through Atos, Jobcentre Plus and the Work Programme.

Until ESA is reformed, the hard-fought rights of independence, choice and control won by the previous generation of disability campaigners will evaporate. Because of our disadvantage in the labour market, ESA has taken away our right to consider ourselves valid human beings.

Beyond the Barriers takes a fresh look at the international evidence for what works and what doesn’t in sickness and disability support systems. It is entirely written and researched by disabled people and takes evidence from consultations with over 1,000 people who have experienced ESA.

It is very easy just to criticise the status quo. Beyond the Barriers aims to offer a comprehensive alternative vision for sickness and disability support in the UK.

24 Responses to “Until ESA is reformed, the rights won by generations of disability campaigners will evaporate”

  1. westerby1

    I have agoraphobia; I am slowly starting to get better and have been to the local shop (about 5 minutes walk) once or twice on my own this year. I have been quite anxious both times and was glad to get back home, but at least I did it, which, after 12 years of being housebound, is a major achievment for me! I am scared that when I tell them this at my next assessment they will assume I am “cured” and able to go anywhere on my own!

  2. jray

    When I owned my Pub a lady came in early one morning,I had seen her peering over the fence a few times during the delivery of the dray,I waved and she approached me,very nervous,but lovely..I offered her a cuppa and asked how she liked the refurbishment of the Pub,she explained that she had wanted to come in before,but she suffers from agoraphobia (I did not really know what this was) and was a prisoner in her small world,she asked if I needed a cleaner,just a few hours a week,I explained that I was looking for bar staff,she was horrified,we had a long talk and she explained her fears.over the next few weeks she started to visit,I asked if she would be interested in tending bar in the afternoon as it was very slow and only locals tended to pop in,I promised that I would be there to train her.It started out 2 days a week,within 6 Months she managed the pub while I went on holiday,2 years later I lost the Pub(converted into a house) she now is a full time carer in charge of a staff of 16. All anybody wants is a chance!

  3. treborc1

    But of course that is one person one illness, I worked my whole life in either the building trade or working in a factory, while in the building trade I feel broke my back, both legs, arms, shoulder, ribs all of which can get better, but I also had a tiny cut out of my spinal cord which caused Paraplegia, lost all sexual function bowel and bladder function. I suffer Chronic pain which is never ending, but I would love to work again, at my last visit to the job center they sent me in a wheelchair to a building company to see if I could train as a Plasterer, they said you can do the bottom of the walls.

    The fact is you have to have employers willing to employ people, and willing to allow me to take time and struggle, along comes a Person fully fit healthy who will not take the time or have issues or need a carer whom do you think they will employ.

  4. jray

    treborc,I was trying to point out that the DWP/JCP are not a help,the lady that started for me was a one off,I have friends that wanted to find work,any work…But no support.yet they are hounded to find work that does not exist.

  5. Cassandra

    Sorry but the WCA exists purely to make the disability benefits system more attractive to potential buyers in the insurance industry when the Tories privatise it. It is also a backdoor way to deprive people of the support they have paid in for and are entitled to.

    No person who has been signed off as unfit for work by the doctors treating them should be put through ‘work capability’ assessments. Benefits should be paid while an individual remains unfit for work, with lifetime awards being approved for anyone with a permanent condition.

    Any ‘back to work’ service for the disabled should be purely voluntary. A better idea would simply be to restore the quotas preventing larger employers from discriminating against disabled workers – starting in the DWP and civil service. Also to cover the fees and expenses for university and FE courses (with no limits on study hours or benefits penalties) for any disabled person needing to retrain.

    On a side note, the ESA death toll just for the year when the figures were published should be a more than ample bargaining chip for the Left to demand the restoration of the old (and safe) IB/DLA system. How many more need to die? Half a million? A million?

    WCA is a human rights atrocity, and the feeble compromises and concessions of Spartacus betray us all.

  6. Cassandra

    Westerby1: Can you go out to ANY place (the pub or cinema, the next town, the shopping mall 7 miles away, etc.) ‘RELIABLY, REPEATABLY AND SAFELY’? Can you do this on a daily basis, or at short notice? Can you walk, drive (if you own a car) or use public transport to travel anywhere within a reasonable distance and do so daily? And do you feel confident you could do all this WITHOUT any ill effects, such as it making you scared or stressed?

    It’s fantastic that you’ve achieved as much as you have, but if you’re not ready to do all the above, you really DON’T need to mention visiting the shop to your assessor.

    According to the benefits law, unless you can perform the task, (e.g. going out) ‘reliably, repeatably, safely (no undue anxiety or stress) and ‘to an acceptable standard (e.g. on a daily basis)’ you are still regarded as UNABLE to perform the task for assessment purposes.

    So by NOT mentioning your progress, you are NOT being untruthful, but you avoid muddying the water and the risk they will wrongly assess you as fully cured.

    Until you ARE fully recovered and confident you could go back to work, perhaps it would be wise to let the progress you’ve made remain YOUR secret.

  7. westerby1

    Thank you for the reply Cassandra. I have decided I will not mention my very, very slight improvement at my next assessment, as I am still a long, long way from being recovered. I do not trust these assessments at all, they are as hit and miss as a coconut shy! I worked and led a “normal” life for 48 years before I became agoraphobic, I am sure that I am the best person to judge when I am recovered, not a tick box, computer run assessment!

  8. treborc1

    One offs are rare, in my area we are looking at 3000 polish people about 800 Lithuanians and god knows how many Chinese I have never seen so many they are everywhere, I’m in competition with these people and then our own unemployed, I have no chance at all.

    I’m waiting for either Miliband or Cameron to suggested using tattoos and badges pinned to our chests.

  9. treborc1

    We have always had these tests before the WCA it was the PCA and the fact is will now take time for the people to find out how they work, PIP’s is now taking over from DLA but once the people get to know the ins and out we will have the information we need. People could not get DLA because they were hammering how seriously ill they were, then we found out it was how your illness or disablity affected you, once we had that information people got the benefits, and no cheating needed.

  10. Graham Keeton

    I just think that the govt doesnt care enough about people who have disabities of any sort and also its because of the few that have cheated the system why the govt has taken its attitude to ALL disabled people Also I think employers have also to change their attiude towards ALL disabilites and just give us who have a disabity(of any kind) a chance in employment it seems as the voluntary sector lets disabled people have a chance but others dont This is all to do with the fact of employers HAVE to pay I also HONESTLY dont see any change until people start to see behond the disablity and see the person sorry for this rant but its just expressing how I feel

  11. Graham Keeton

    All this report does is highlight the problem but there is NO REAL solution This problem will just get worse UNTIL someone or some group makes a stand and says NO more THE problem with that is NO ONE(including my self) as the real guts to do that because of fear of what others(WITH OR WITHOUT a disblity) thinks I just think the whole of the DWP doesnt care or even wants to care about this issue end of rant

  12. outinthecold

    It does offer solutions.
    It isnt another of those reports that just highlights the problems. That is why it is being taken so seriously.

  13. Graham Keeton

    Im sorry but the solutions in the report wont go far enough

  14. outinthecold

    Have you read the report? If you have we would welcome feedback as to where it can be improved.

  15. Graham Keeton

    yes I have read ALL of the report and the only way all of this situation will ever change IS (1) IF the whole of the media and DWP and others realize that disabled people ARE NOT a burden in society (2) that all of us AND I DO MEAN ALL dont vote for the tories (3) that the whole benifit system is reformed in a fair way AND then maybe just maybe things wlll be better but HONESTLY do YOU really honestly and truthfully think that will ever happen I JUST DONT THINK SO because at the end of the day you could have a million or so of these sort of reports and a trillion or so campaigns BUT UNTIL people STOP thinking that disabled people are a burden or a cost then NOTHING will ever change sorry for the rant but this is how I feel and IF i DONT get a satisfactory reply this time I just wont bother to post anymore okay

  16. Graham Keeton

    As you can see I am really disgruntled and fed up about this

  17. outinthecold

    Ok, lets start with point 1.
    Whoever is in power holds the media – a party who supports disabled people can reverse the negativity if that is their desire. I think the majority of the country have now realised they have been part if a huge propaganda campaign. Remember other campaigns over the years? Single mums for instance?
    The DWP are well aware that disabled people are not a burden. However they do believe that disabled people are low hanging fruit and that the coffers can be plundered. Hence the negative rhetoric.
    None of that is irreversible.
    And as you quite rightly point out, some 3 million voters plus their friends, families and carers are at stake here. Which sort of covers point 2.
    The report does address the benefit system, and we spent many hours debating how far into the benefit system we should step. Eventually we settled with a new type of sickness benefit that recognises many more barriers to work, and is much more dynamic and intuitive that the blunt weapon that is ESA at the moment. It links to JSA in that we have attempted to reduce fiscal cliffs and reward participation, recognise inability to participate and have no financial penalty or stigma attached to that, and to offer much better tailored support on the journey back to work, including developing opportunities that are not work, such as sport, hobbies, community life etc.
    What has happened is that the current rhetoric has backfired – by creating a hostile environment for sick and disabled people, we have been marginalised more – after all, to advertise us as “lazy, scrounging fraudsters” is not going to have people queuing to employ us, or create an environment where people flourish.

    So you are right, we need a different picture, a different party, and a different policy.

    Hopefully our report can help Labour write that policy, hopefully the evidence in that report will convince them that, if possible, the journey back to work is as important as work itself , and that our solutions are not just a benefit to the the individual but to society too.
    We are a cost, but we are not a burden. We should be, and hopefully will be, recognised as no more or less of a cost than any other cost, and that cost does not equate to burden.
    You ask about fairness. Our report suggests that the WCA is not fair – we know its not,so we wont discuss that again.
    A more fair assessment would look at a person’s whole life, what skills they have,what they have lost, what the barriers are, how they can be tackled. If those barriers are insurmountable, or the person is too ill to work, or there really isnt very much chance they can be employed – then in all fairness why harrass them further? We suggest that the person isnt harrassed further – that instead they can choose to have help, choose the type of help, choose what barriers they want demolishing.
    Our report has shown that one-size-fits-all actually fits no-one, as all disabled people are different. And any new system must listen carefully to the individual and respond to their individual needs.

  18. Graham Keeton

    ok not 100%sure that even the labour party would be fully understanding of this problem but thanks for your reply i WILL now leave this discussion completely as to me its going nowhere

  19. Graham Keeton

    so thanks but no thanks anymore ok

  20. Graham Keeton

    also just ask any geniunely disabled person who wants to get back to work if they think they are a burden (financial one) to the govt and they would without a doubt say yes and this is the problem the govt does think that people with disablities are a financial burden as they have an agenda to follow and thats from the super rich bankers and other business leaders and the govt is just following orders from them all this govt is interested in is reducing the defict and they will get that done at WHAT EVER cost I DO agree with SOME of the points in your reply to me BUT not ALL OF THEM

  21. sarntcrip

    I’M GETTING SICK AND TIRED OF HAVING TO JUSTIFY MY VERY EXISTENCE TIME AND TIME AGAIN i’m permanently disabled have been since sept97 if i could pick up my bed and walk i would if disability had not struck i would not have stopped working only wish i could now they want more money for fewer care hours and they’ve doubled my council tax sometimes i wonder if surviving was worth it, no politicians support us to a lesser or greater extent we are viewed with suspicion that somehow we could work and don’t need our costly help we are being mercilessly attacked this is the sort of thing that kicked off problems in europe in the 1920S, IT DID NOT END WELL
    WE ARE AN UNDERCLASS TO BE IGNORED AT ALL COSTS LEST OUR ‘LIFESTYLE CHOICE ‘SHOULD SPREAD .REMEMBER WE ARE NOT ALONE.

  22. srgc2731

    http://www.dailymotion.com/video/xwg0up_atos-secret-filming_news#.UVFqUldcbwG

    Here are the rules of the tory game

    only those who make the rules can win

  23. srgc2731

    hitler put up posters emphasizing the cost of a disabled person to the german state

    euthanasia followed

  24. Jonno Raab

    I had to stop taking vital medication because the side effects of chronic fatigue would have prevented me from carrying out the tasks that the Jobcentre demanded. Then they prevented me from carrying out those tasks by inundating me with paperwork which had to be completed under threat of losing my benefit. At 53 years old I became an injecting drug user self medicating with crystal meth to enable me to comply with the demands made of me. I had already had a ruling from the ICE team and from a tribunal judge which the Jobcentre ignored as they disagreed and had challenged the judge on his power to overthrow their decisions. They ignored my letters of complaint so I could not escalate them. Then they walked away before I had completed the forced labour I had been ordered to carry out and said that as I was moving from income support to ESA I should continue my correspondance through them and my complaint of maladministration has been thrown in the bin. My doctor said my human rights were being violated and I was being discriminated against but the Jobcentre staff said this was impossible as they have been declared immune to these laws. It sounds like a scene from a sick distopia story but this is what we suddenly have, instead of a welfare state we have a murder policy to cull the non productive population. Shame it’s not extended to daydream CaMoron and Ian Duncehead Smith.

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