Featured image: stethoscope, pen and collection of pills on a clipboard labelled “Medical History Form”, photo credit: phasinphoto.
The purpose of the welfare system is to provide a basic standard of living to folks who need it. It has fundamentally failed in this purpose. The system as it is now in the UK is so fixated on means testing and preventing benefit fraud that it is no longer fit for purpose. I don’t just write about this as someone who’s read a newspaper other than the Daily Mail, I write this as someone who’s currently in the benefits system and struggling to survive.
Let’s walk through the system in the order that I had to negotiate it, shall we? First, I had to stop working due to unexpected and extended illness. Yes, I had some savings, but even when budgeting carefully, there was no way I could afford the rent and the bills on Statutory Sick Pay (SSP). I checked my eligibility for Income Support. Nope. SSP is supposed to be enough to live on. I applied for Housing Benefit. After keeping me hanging with “lost details” and other administrative fails until my meagre savings ran out, they offered me so little that I had no choice but to hand in my notice on the property. Part of what was harming my ability to pay the rent on housing benefit was the “bedroom tax”; a reduction in benefit for each “spare” bedroom you have. As a couple with no kids, we were entitled to just one bedroom, therefore we had our housing benefit reduced as punishment for daring to fall ill whilst over-occupying a property. Didn’t matter that the maisonette was far better value for money than any of the smaller options available, or even that there weren’t any smaller options to move into. Yeah, that second point. I looked, desperately, for another place to move into that was small enough not to reduce our benefit payments. Once we’d crossed off all the properties that disallowed housing benefit and the ones that disallowed children (even ones that only visit occasionally), there was literally nothing within range for my partner to travel to work. Neither of us can drive, and £4 a day, 3 days a week for 16 hours at minimum wage is a bigger bite out of Otter’s income than we could afford. It had to be walking distance. There wasn’t anything.
Otter moved into his mother’s understairs cupboard, I convinced a family member to pay for a ramshackle garage to house the furniture until we could find somewhere else to live, or sell it all. For the summer I sofa-surfed, battling fatigue from my medical conditions and pulling a gardening trolley with all my camping gear miles across the city to ensure I had a roof or at least canvas over my head. When there were no sofas, I paid the £10/night fee to camp a few miles out of the city. The housing benefit, of course, stopped. The council had long since decided that as a physically disabled, mentally ill person, I wasn’t “vulnerable” enough for them to bother trying to find me any housing. Unsurprisingly, my illness worsened, and I persuaded a friend to let me sofa surf in the longer-term at their place, since Winter was approaching and my health wasn’t getting any better. Of course, I can’t just use their fuel and water and eat their food without contributing something, so I pay £9 a day here to be housed and fed. Since I don’t pay any rent, I can’t get any financial help for keeping me here.
In September, my SSP ran out and I applied for Employment Support Allowance. This is where I can talk a lot about how many barriers there are to legitimately ill and disabled people claiming benefits that they need. First, you need to get hold of the form. This either means getting to your local JobCentrePlus or ordering one on the phone. Either way, you have to have a postal address for them to send things to. You need to fill in a long form with all your details. These details, in my case, were at the back of the garage after the hurried move. After retrieving those, I needed to find a way to copy them. Don’t ever, ever, send original documents to any branch of the Department of Work and Pensions if you can avoid it. I could either go to the JobCentrePlus, which would cost money for the bus, and for which I would have only their word that they had copied all the information, or find a way to copy the papers myself and post them. Bus fare plus copying fees at the library looked like a false economy, since I’m going to be sending a lot of these things in. Lucky I had a few quid in my overdraft to throw at a tiny scanner, and permission to borrow a friend’s printer.
All the stuff finally sent in, I then had to attend the Work Capability Assessment. These are the morbid terror of every disabled person in the UK. A nurse hired by a private company, with no expertise in your conditions, asks you all the questions you’ve already answered in the long questionnaire that you sent in a month or so ago. Then they ask some more questions, like why don’t you have a formal diagnosis for this, or the specifics of how much urine you leak if you have urinary incontinence. Mine was 90 minutes long, and mentally, emotionally and physically exhausting. It wasn’t long before my fatigue kicked in, and I started struggling to understand what the nurse wanted from me. A reading/vision test quite unnecessarily had different levels of cognitive accessibility on each of the text samples, as well as different font sizes, and was delivered with only the instruction to “point out which one was easiest to read”. I had to clarify if it was a vision or comprehension test before I could continue.
After all the questions and reiterating and showing of the same paper evidence that they’ve already received copies of, there’s a physical examination. Stand up, raise your arms, can you do this? Can you do that? How strong is your grip? Get on the couch and raise your legs. OK, we’re done now.
You’re not done. The assessment started before you even got into the assessment room, they were watching and judging from the moment they called you in the waiting room. It’s not over until you’ve left the building. Even the ground floor assessment rooms have two steps up to the exit, which they watch your approach to on the way out of the building.
After all that, you’ll get your decision letter, containing the instructions for what to do if you disagree with their assessment. You call the number and an operator at the JobCentre asks “have you received the report?”. Of course you haven’t, they haven’t sent it. Wait a day or two for it to arrive, but bear in mind that the deadline for your request for mandatory reconsideration is for one month after your decision letter, not the day when you receive your report.
So you’ve got your report. First you have to read through it. Mine was 36 sides of paper, poorly typed, poorly spelled, mostly copy-and-pasted from other sections of the same report. I read through it, which in itself was an emotionally taxing activity. They say that there are “Lies, Damn Lies, and Statistics”, this is incorrect. There are Lies, Damn Lies, and the lies they write in Work Capability Assessments. Your assessor will have phrased everything in such a way that it suggests you can do more than you actually can. If you can manage to get on a bus to go to essential medical appointments, then getting on the bus will be described as part of your “average day”. Watch out for word slips, like “rarely” turning into “occasionally” turning into “usually”. Then of course there will be all the factual corrections you have to make because the registered nurse you were put in front of hasn’t the slightest clue about any of your diagnoses, even if they were explained in the evidence you submitted.
I’d like to share one of these in particular with you, as it’s relevant to autistic folks, and those of us with mental illness. There’s a section where the nurse looks at you and judges how you’re feeling by your body language. This is a very tricky bit of the assessment. Even if you’re visibly trembling, none of that will be on record because the only available recording is audio (which I highly recommend you request in good time for your assessment). Here’s the relevant bit of my report, emphasis mine:
Relevant Features of Clinical Examination
Reduced facial expression (may indicate depression)
Relevant Normal Findings:
Did not appear to be trembling
Did not make rocking movements (rocking may indicate anxiety)
Was able to sit still during the interview
Coped well at interview
Cognition – General
Oriented in time, place and person
Did not require prompting at interview
Adequate concentration on examination
Had good insight into their illness
Adequate awareness of dangers
So first, the assessor states that I have reduced facial expression. This, by the by, is one of those frequently reported traits of autism. Yes, I do have depression, but what she’s observing here is the communication gap caused by the difference between autistic and non-autistic body language. Otter accompanied to this assessment, and it was perfectly clear to him that I was not coping well. Also relevant to autism is that any self-soothing repetitive motion like rocking will have been targeted by parents and teachers as a problem, and many autistics will have been trained not to rock, no matter how anxious they are. In fact, we’re very heavily influenced not to show any negative emotions at all, lest they upset our parents.
You’ll probably also want to include additional evidence in response to their mischaracterisations. Good luck getting a specialist to see you, think about it and write a supporting letter within a month (minus however many days it took to receive and read the report and figure out who you need to get more evidence from).
After all that soul-destroying work, you have to get the report and evidence back to the DWP. That means either getting to the JobCentre or a postbox to send the documents.
So, you can see how someone who struggles with day-to-day living such that they’re applying for Employment Support Allowance may well find it impossible to satisfy all of these requirements. The illogic of this is that in order to get the benefits you should be entitled to because you can’t put sustained effort into work-like activity, you have to do a heck of a lot of work-like activity.