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.

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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.

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