I just got a weird phone call...

Woman from my local Job Centre: We're just updating our notes. So what are your aims?
Me: I thought these kinds of questions were only for people in the Work Related Activity Group?
JC: No, we're asking people in the Support Group. It's because you're in the Support Group that we're doing this over the phone rather than asking you to come in in person.
Me: Well I don't have any aims. Given the state of my health, aspiring to do something would just be false hope.
JC: It says here that you're interested in stand up comedy...
Me: Yes, that's what I used to do before I became too ill to carry on.
JC: Was you like on TV? Or comedy clubs?
Me: I only got to do stand up for two and a half years before I became too ill to carry on. No-one makes it onto TV in only two and a half years.
JC: So, has your health deteriorated?
Me: Not really since my last Atos assessment in December 2012. I've gotten a couple of new diagnoses, but nothing significant.
JC: [slightly concerned] But you're OK though, right?
Me: Not really, no!
JC: OK. That's fine. If you ever come in here ask to see me, [name].

As Latentexistence says:

@lisybabe Well that's worrying. They could easily make things much worse if they call some people.

— Tentacle Sixteen (@latentexistence) March 4, 2014

Edited to add: I should have mentioned that I didn't answer on the first go. During the 30 hours prior to this conversation, she'd tried to call 3 times while I was asleep.

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.

The WCA: Sick Joke, or National Disgrace?

The migration from Incapacity Benefit to ESA is now underway, a migration the Con-Dems and the rabid press trumpet as a step towards getting all those indolent fraudsters on disability benefits into work. If only anything of that was true. The truth is a system that has been deliberately designed to fail a significant proportion of clearly disabled people and assessment criteria that have already been identified as unacceptable by the independent assessor. Then that system, with its built-in failures, is handed over to the contractor ATOS Origin to operate, and they set out to deliberately overstress it in order to process as many people as possible, in as little time as possible, and at as low a cost as possible, all in the name of the Great God Profit; no matter the inadequacy of the process delivered, no matter the huge percentage of claims overturned at appeal, no matter a failure rate that would be unacceptable in any other industry. And then there are the medics who conduct their inadequate assessments, happily claiming they don’t need to meet their normal standards of care, because they aren’t acting as doctors or whatever – um, isn’t that the very reason ATOS crossed your palm with 30 pieces of silver?

I'm that rare bird, the ESA claimant who actually passed the WCA without needing to appeal, in theory I have no axe to grind from having an application refused. However the process fell so far short of an acceptable level of competence that I have to stand my ground alongside those unjustly failed by the system.

I became unemployed just after ESA and the WCA were introduced, but initially elected to claim JSA, in large part because of the stories already coming out about the way the WCA system was failing disabled people. With an Employment Tribunal claim to manage I just didn’t have the energy available to fight for ESA if necessary. But ESA wasn’t that easy to avoid and it rapidly became clear (contrary to Professor Harrington’s complacent assurances in his review of the WCA) that JCP were utterly incapable of dealing with someone who was either disabled or highly qualified, and god help you if you were both. In fact the only way they could deal with me was by ignoring both qualifications and disability. That sad tale I’ve already described, but the end result was a complaint to ministerial level, abject apologies from JCP, and a request that I transfer onto ESA.

As an ESA claimant I was first expected to fill in the 28 page ESA50 form. The unavailability of an electronic version of this form from 2008 until the new version rolled out a few days ago speaks to an utter institutional contempt within DWP for disabled people and their needs. The paper form is not simply inaccessible to people with visual impairments, but also to anyone, like me, who is unable to write comfortably or legibly as a result of their disability. Equally the space provided in the form is utterly inadequate for anyone, again like me, who needs to discuss several decades of experience of a complex disability. And while someone could potentially fill it in for me, there are details of how my disability affects me that I’m not even comfortable discussing with my specialists, never mind anyone else.

My first WCA assessment was scheduled for May 6^th, 2010 at the local ATOS Assessment Centre, and what an ill-omened day that turned out to be! The building is located in the centre of town and has no on-site disabled parking, so is utterly unfit for purpose before you even get to the door. There is a public disabled car park some 150m away, but that regularly requires a wait of over 30 minutes to find a space in it and like many disabled people I cannot walk even 50m without experiencing significant pain. The next nearest disabled parking is 350m away. If you can manage to get to the building, then access at the door is via intercom, so how someone deaf and/or without speech is supposed to manage is a mystery. The DDA and the Equality Act both require service providers to make provisions based on the likely needs of their clientele, so a building whose entire clientele is disabled should make a significantly greater degree of access provision than most, yet ATOS continue to operate centres, and even open new ones, that fail to meet even the most basic standards of accessibility.

I had informed ATOS in advance via the ESA50 form that I would require adjustable seating because of the difficulty in sitting that results from my disability, which is in fact the core of my problems regarding working, so pretty much fundamental to the whole assessment process. None had been provided. The tattily-dressed individual who checked my ID led me into a waiting room filled with cheap, non-adjustable seating completely inappropriate to the needs of a client population containing a high proportion of people with musculo-skeletal and pain and fatigue based disorders. Within seconds of trying the seating I had realised that I was completely unable to sit on it in any comfort, only by rolling sideways onto my hip was I able to tolerate it at all. By the time I was called through, something over 10 minutes later (despite apparently being the only client in the building), I was in considerable distress, which only deepened when I reached the examination room and found that the seating there was actually worse. It was at this point that I discovered the tattily-dressed individual was actually the doctor who was supposed to assess me, not the caretaker as I had first assumed. I pointed out that I had told ATOS I needed an adjustable seat and his reaction was ‘Oh, you’ll just have to book another appointment’. He then admitted that this was not the first time this problem had occurred, that they had asked for adjustable seating to be supplied and that they had been told by their regional management to ‘make do with what you have’. In my opinion this is a clear indication of an active contempt by ATOS management for both their client population and for the reasonable adjustment provisions of the Disability Discrimination Act and now the Equality Act.

I returned home having wasted my time and experienced major amounts of pain as a result. This pain then served to trigger a massive flare-up in my condition and I spent the following week on the floor of my bathroom as I was wracked by one muscle-spasm after another, not knowing even what day it was. I eventually managed to get to my GP, who doubled the strength of my opiate painkillers, which brought the flare-up under control, but at the cost of my wandering around in a daze for several months with no energy or volition. The loss of control in this kind of flare-up is extremely distressing both physically and mentally and I was completely unable to deal with mail during this period, simply the thought of a letter from ATOS or DWP being sufficient to send my pain levels sky-rocketing. Ultimately it took me six months to completely catch up with my mail, at which point I discovered a letter from ATOS dated a week after my initial WCA date and calling me for another WCA a few days later, which needless to say I had not attended, being barely conscious at the time.

So, knowing that I had a major problem with their centre environment, having failed to provide a requested reasonable adjustment, and having visibly caused me considerable distress, ATOS didn’t even think it was worth ringing me to ensure that my appointment was rearranged for a convenient time and to assure me that the needed reasonable adjustment would be there this time. Their response was actually worse than this, but it would be several months before I realised quite how bad.

In late-August I received a letter from DWP stating that my ESA payments had been stopped, from the week before my initial appointment, owing to my failure to attend the WCA. I called the office the letter had originated with and the person I spoke to was perhaps the only DWP employee ever to have impressed me with competence and common sense. She immediately accepted my inability to attend a WCA I was not aware of and noted that ATOS had made no mention of their failure to provide a required reasonable adjustment, but had simply stated that I had not completed the initial WCA. When ATOS set out to deliberately portray their own error as a failing by the victim of that error, and a failing with fiscal consequences, then there is no way to interpret their actions as anything less than actively and deliberately dishonest.

Thanks to an unusual outbreak of common sense at DWP, my claim was eventually reinstated and a further WCA was arranged for mid-October, again at the local assessment centre. This time I was met at the door with an adjustable chair. Unfortunately I could not even raise the seat of the chair to an appropriate level and at five feet eight I am not exactly tall, nor did the seat angle adjust, the only hope I have of a usable position if the seat isn’t high enough. Again I was reduced to rolling sideways onto my hip. This time the delay was not 10 minutes, it was something over 45 minutes. By the time I was called through (with the receptionist bringing the useless adjustable seat through after me) I was physically shaking. It was a different doctor to my first appointment, but again he was scruffily dressed in a tatty anorak. It is impossible to conclude that this reflects anything other than a profound lack of respect for their clientele on the part of ATOS medical staff.

My pain-management consultant has told me that is almost impossible to get doctors who are not specialists in pain-management to comprehend just how disabling pain is, and I was therefore concerned about how much of a background the assessor had in chronic-pain based disabilities, unfortunately his manner instantly convinced me that any question would be interpreted negatively and I did not feel able to make my point. As the session started I rapidly became aware that I was in so much pain that I was not answering effectively and was making a case for myself that was not as strong as it should have been. It also became rapidly apparent that the doctor was profoundly irritated by my refusal to give yes or no answers. He may have found it irritating, but any understanding of my condition required that he listen to the details and I would not be swayed on this, though undoubtedly many people who are less able to express themselves will have been browbeaten into less than complete answers by his manner. It was also extremely apparent that he was reading from a computer-based script, his eyes fixed on the screen, and less than pleased with answers that did not fit the format its questions mandated. As a result of this there was an almost complete refusal to make eye contact, destroying any sense that he was truly engaging with me.

More disturbingly, he chose to take umbrage at certain of my points. I do not expect automatic complete agreement, but I do not expect to be told that I am wrong to have tried to search out information on the assessment process, particularly when his subsequent conduct proved the correctness of that information, nor do I expect to be criticised for the way I have described the effects of my disability on my walking, particularly when later events demonstrated that I was being absolutely accurate.

Some 20-odd minutes into the assessment I reached my limits on my pain tolerance, either I had to stand, or vomit. I spent the rest of the assessment balanced on one leg and crutches and it was only at this point, a cynic would say at the point he started to fear being found negligent in my treatment, that the doctor finally broke script and started to treat me as an individual. He asked several times whether I was able to continue, but by that point I just wanted the WCA over with, I certainly wasn’t about to put myself through the process for a third time. He completed the physical part of the assessment, but even then he criticised me for being unable to bend my leg so he could tap my knee with his hammer. Locking my leg extended is something my disability does when my pain levels are extremely high, I have no conscious control of it and I don’t expect anyone, certainly not a doctor acting in a medical capacity, to criticise me for it.

WCA thankfully over, I made it back to my car on one leg, and, even though it is a bare 5 minutes from the assessment centre to my house, my pain levels were so high, never mind the opiate painkillers, never mind the TENS machine, that I had to give serious thought to pulling over on the way home. I spent the rest of the day in bed, the first hour physically shaking.

In late-November I finally received the notification that I had been placed into the Work Related Activities Group, which is where I believe I should be, together with back-payment of all the ESA payments I had been due since May, but the process had taken 10 months and caused me a considerable amount of pain and physical distress, actually worsening my disability. The treatment I received has convinced me that ATOS have a complete and utter contempt for the needs of their clients that adds up to institutional disability discrimination and that their medical assessors are happily compliant in this. Sadly DWP is little better, my experience has been that the system only works when you complain.

I have a skill set that should make me an asset, I am making every effort I can to maximise my potential for employment, but to date the organs of state that are supposed to support me in this actually seem to be working against me. And at the start of the 2012 financial year, no matter that my disability is worsening, no matter the efforts I am making to find work, the 12 month limitation of eligibility for contributions-based ESA will kick in and cut my benefits to nothing.

So that’s my experience of WCA and ATOS, contempt for disabled people that amounts to deliberate abuse. They damned near turned me into one of those statistics for withdrawn or failed claims that Nick Clegg loves to claim are evidence of fraudulent intent, rather than what they really are, evidence of a system that is failing those who need it most. I got through the system because I’m too bloody-minded to give in when people erect barriers in front of me and because I’m too articulate and persistent to easily dismiss; but many people aren’t as bloody-minded, aren’t as articulate, aren’t as persistent and the system will be far more of a nightmare for them than it was for me. The system should assess you fairly whoever you are, at the moment it isn’t even doing that for the people it passes. The phrase ‘a national disgrace’ is often over-used, but it was never more appropriate than when describing ATOS and the WCA.

And lest we forget, this isn’t simply Con-Dem policy, but a policy that began under Labour and which Ed Milliband continues to support.

The Inept Leading the Clueless: JCP, JSA and Disability

Professor Malcolm Harrington’s review of the ESA WCA claimed that disabled ESA claimants had nothing to fear if they were rejected and placed on JSA instead because 'Support is available on JSA that if explained to claimants could allay some of their fears about “failing” the WCA'. As a recent disabled JSA claimant (December 2008 to February 2010), I thought it might be interesting to take a look at the reality behind that blithe assurance. 

With an extensive outsourcing process behind me I was likely better informed than many JSA claimants and I made it clear in my initial contacts with JCP that I would need to talk to a Disability Employment Adviser. Getting the initial JSA paperwork back full of errors was worrying, the initial interview with the DEA was worse. Having explained to her that I was a highly qualified, highly experienced engineer and that the only thing stopping me being a strong candidate for any of dozens of available posts was my physical inability to commute or relocate, she promptly started advocating that I apply for minimum wage positions and it was fairly clear that that was her default setting for any disabled person sent to talk to her. As far as I am concerned there are two words that define that attitude: Institutional Discrimination. As I had suggested one possible way ahead for me would be to study for a doctorate she did pass me on to a careers adviser colleague of hers, who somewhat floored me by revealing that until the month before she hadn’t been allowed to talk to anyone with more than two GCSEs; how she was meant to help someone wanting to talk about a doctorate I’m not certain. To her credit she did manage to pass me on to an actual university careers advisor, but that was through a personal contact of her own rather than a regular JCP route.

I then moved into the fortnightly grind of signing on; initially with the DEA, but within two months she had thrown me back into the general pool, saying she couldn’t offer me any further help. This put me on a par with most JSA claimants, which may not seem like a problem, but my disability means that I am not most people. The Job Centre was pleasantly decorated and furnished, but it doesn’t seem to have occurred to anyone that they might need on-site disabled parking, or that couches and non-adjustable seats, no matter how smart, might not be adequate for someone who has problems sitting or standing for any length of time (and when you are running the better part of an hour behind scheduled appointment times with twenty people waiting and only eight seats in the waiting area…). It averaged out that every other trip to sign on was leaving me curled-up in pain for the rest of the day. That was just the physical access issues, I was also seeing a different JCP clerk pretty much every time, some of them obviously half-trained back-office staff dragged out to try and deal with the ever-increasing number of claimants, and almost every time I would be questioned about why there were agreed restrictions on commute distance in my Job Seeker’s Agreement. Surely the whole point of defining the Job Seeker’s Agreement with the DEA was to have it agreed by someone with some knowledge of disability? Not for it to then be questioned by everyone else who came into contact with it? Nor for me to need to explain the details of my disability to every JCP clerk I dealt with in order to justify myself. As soon as the DEA dumped me, and even though my crutches demonstrate to everyone who sees me that I am disabled, JCP lost sight of the fact that I was disabled and started trying to treat me as indistinguishable from anyone else, if not actively pressuring me into being precisely that.

JSA working practices for signing-on were enough to make any efficiency expert curl up in the corner in despair. Their computer system seems to be some Heath-Robinsonesque lash-up, part working in Windows, part needing them to spawn out into some proprietary tool. My part of the process as the claimant was to provide a list of job search activities made in the past fortnight and a little slip of a paper form was provided for this. As part of my disability means I can’t write legibly or comfortably, and the form was in any case too small to cover more than a fraction of my job-search activities, I simply ran-off a word-processed list each time, only to have several of the JSA clerks take umbrage that the list wasn’t on the ‘official’ form. What did they do with the form once I handed it over? They copied it, manually, into an on-screen form, taking anything up to five minutes of hunt-and-peck typing, then handed me back the original. Hello, this is the 21^st Century! Why drag me physically into the Job Centre, causing me considerable pain and distress, for a transaction that can be done more quickly and more efficiently using a telephone and/or email?

As I passed various JSA milestones I would occasionally have a more in-depth interview with someone at which I would have to justify everything yet again. Facing a highly-qualified disabled person clearly puzzled them, their systems could barely cope with a highly-qualified claimant, add disability to the mix and they simply had no reference point on how to deal with me. They did send me to talk to an ‘executive’ recruitment consultant at one point, but as soon as I explained what effect disability has on my ability to work, a look of absolute panic swept across her face and the only suggestion she could come up with was to pass my details to the Royal British Legion’s training agency – 18 months later I’ve still heard nothing back from them. The one real change was that after 6 months of claiming Contributions-Based JSA I stopped receiving any benefit at all.

When I reached the one year anniversary of my JSA claim, I became subject to ‘Flexible New Deal’ and received a letter telling me that if I didn’t attend an interview with a training contractor my benefit would be docked – that would be the benefit I wasn’t receiving anyway? No ‘Dear Sir’, no ‘please’ or ‘thank you’, just ‘Be Here or Else’. I know a lot of disabled people who would be seriously distressed by, if not completely unable to deal with, a threatening letter of that nature, yet the DWP propose to expand ‘conditionality’ of this sort to all ESA claimants, never mind just the ones rejected onto JSA.

So I turned up on time for the appointment with the training contractor, only to find that the address they had given me was wrong. Fortunately I was able to figure out which building on the out-of-town trading estate was likely theirs, even though its signage was for a completely different training contractor. If I had turned up using a wheelchair I would have been completely unable to access the building, as it was the step was so high that I fell over the threshold. The downstairs office was completely unmanned, with a handwritten sign on a piece of torn cardboard propped on a chair advising me that I needed to go back outside and up the stairs. How a visually impaired client was supposed to deal with that arrangement is anyone’s guess. The staircase I was supposed to climb was an exposed iron arrangement of the type commonly found in warehouses. On a wet day I would never have attempted it, and this was the middle of a notably wet December; even on the one dry day of the month I had to seriously consider whether I could safely make it to the top.

Having decided to risk the stairs, a corridor at the top led to a small office, into which were crammed a dozen desks with workstations surrounding a large central table. Inside the office were two staff members and another client. If I had somehow been able to get a wheelchair to the entrance to the room I would not have been able to get it inside, and even using crutches I had considerable problems navigating to a chair. Telling the staff who I was, and who I was due to see, produced consternation. I was apparently scheduled to see their ‘disability specialist’, but she was scheduled to be in a completely different office in an entirely different town. So one of the other staff decided that she would deal with me instead, and started working through a computerised form. Before I quite realised what was happening I was being asked intimate questions about my disability, despite the fact there was a complete stranger sitting immediately behind me. Apparently the entire concept of data protection, and their legal obligations under the Data Protection Act and the Disability Discrimination Act, had completely passed them by. To give them their due, once I had explained the limitations resulting from my disability the staff member immediately said that she felt that I was completely inappropriate for their programme, which apparently allowed them to compel me to apply for jobs, but did not allow them to first consider whether I was physically capable of doing the job, and that the only action she was giving me was to urgently contact JCP and tell them that she thought I needed to be on ESA, not JSA. The physical after-effects of that 45 minute interview put me in bed for the next week with massively increased pain levels.

After that clowning glory of incompetence I decided enough was enough and wrote a formal letter of complaint to JCP, copying it to the then-Minister for Disabled People (also my local MP as it happened). I also called JCP, spoke to a supervisor and left the switch from JSA to ESA in their hands while I went to visit family over Christmas. I returned home, a week later than expected due to the snow, to find a letter dated 5^th of January saying I had failed to sign on and my JSA claim had been stopped (hello, national crisis, massive snow disruption, not claiming JSA any more) and a letter dated the 6^th confirming that and sending me my P45. Despite my supposedly terminated JSA claim there was also a letter from the training contractor demanding I attend another interview. I rang JCP to complain, only to be told by the supervisor I had spoken to before Christmas that she had never heard me say anything about switching my claim to ESA, and had phoned me on my home number (despite me having told her I would be away) to confirm that I should be on the scheme with the training contractor

I arranged a face-to-face meeting with the supervisor, but by the time the meeting happened my complaint to the minister had obviously filtered through as I was greeted with a slightly awed ‘You’re the one that wrote the letter, aren’t you?’ and a general falling over themselves to get my JSA claim reinstated and then transferred over to ESA, which eventually happened a full two months after I had initially asked JCP to put it in hand. I also received a fairly abject written apology for the way I had been treated, which admitted JCP had completely lost sight of the nature of my disability, but still attempted to push the majority of blame onto the training agency – apparently the concept of being legally and morally responsible for the behaviour of your contractors hasn’t penetrated into JCP.

So there we have it, my experience of just how well JCP manages to deal with disabled JSA claimants: Professor Harrington, I am afraid that I will have to differ with your review; disabled ESA claimants whose claims are rejected and who are placed on JSA have everything to fear from JCP’s complete cluelessness about disability and their total lack of support for disabled claimants.

And my ESA claim? That’s a sad tale for another day.