Today Wonder Boy and I attended our first DWP assessment, well technically, our second but I’ll come onto that in a minute. The DWP – Department for Work and Pensions – assesses anyone who receives benefits from them. Wonder Boy receives a benefit called Employment and Support Allowance or ESA. ESA is paid to anyone who is ill or disabled and ‘offers financial support if you are unable to work or personalised help so that you can work if you’re able to’ (Gov.UK, 2017). Those eligible for ESA are streamed into one of two categories, a work-related activity group and a support group. Essentially the work-related activity group is for people who are likely to be able to work with the right amount of support and the support group are those who are deemed ineligible for work. WB would fit into this latter group.
We have put in a claim for ESA on the advice of another parent carer – all the best advice always, always comes from another carer. I have NEVER had benefits advice from any professional we have come into contact with EVER. I think it’s Government policy to keep potential claimants in the dark about their entitlements. Anywho, we put in an application for ESA and WB was awarded. It’s not a massive amount of money, about £75 a week, but to WB it is a small fortune and for the first time in his young life it means he has spending power JUST LIKE OTHER YOUNG PEOPLE. He uses it to buy snazzy clothes to wear when he goes out on dates, to buy Christmas and birthday presents for his family, to buy things he likes (drones mainly, although saving for a tractor, probably a Fergie (don’t ask)) and more recently he has asked if he can take his siblings and step siblings out for a swanky dinner. He is wonderfully generous, which makes him a bit vulnerable so I keep an eye on the finances for him through a deputyship- see earlier blog about signing up to dating (turned out to be porn) site.
In order to catch benefit cheats and fraudulent claimants WB and people like him have to go for work capability assessments, just in case their life long disability cures itself and they are no longer facing their daily challenges and could potentially work. Now there is an important point I would like to raise here. You have got to be pretty fricking desperate to pretend to have a disability in order to get benefits. I’m not condoning it in any way but I’m suggesting that to employ assessment officers to assess the 99% of GENUINE disability benefit claimants is just a waste of time and money. According to SCOPE (2017) ‘Disability benefits have the lowest levels of fraud – Disability Living Allowance (DLA) fraud represents 0.5% of the total amount spent on this benefit’. Just 0.5%.
So why do we make such a palaver out of it? Mainly because public perception about benefit fraud is skewed. The general public overestimate the number of fraudulent claims enormously (see Geiger’s paper ‘Benefit ‘myths’? The accuracy and inaccuracy of public beliefs about the benefits system’ for further information). Citizen Advice Scotland posted an article entitled ‘Myth-busting: the real figures on benefit fraud’. In it the CAS state that the UK Government paid out just under £1.6billion in fraudulent claims in 2012. That is a SHED LOAD of money, but equates to less than 1% of overall benefits and tax credits. If we compare that to benefits paid due to claimant/official error (£2.2billion) or tax fraud (£14billion or 69% of all public sector fraud) you can see why I’m a bit miffed that I have to go through this ordeal with WB.
The original appointment was scheduled for a Wednesday. This is a college day for Wonder Boy so I contacted the DWP to reschedule the appointment. We couldn’t make the only other appointment they offered us and their system only runs in two week blocks. I then had to note in my diary that I needed to follow this up again the following week. I know this is a minor inconvenience, but I add it to demonstrate that my life as a carer is a life interrupted. It is a constant battle to remember all the bits of paper I need to gather, all the appointments I need to book, the services I need to follow up on and that is before I even hear about the new things Wonder Boy wants to try, places he wants to go, people he wants to see. I work as much as possible and would love a full-time job with sick pay and holidays and a pension and colleagues and works do’s and security and meaning, but I am too conscientious (which used to be valued in the workplace). I know that at least one day a week will be spent ‘doing carer admin’ and I worry that this will not be thought of very highly by a new employer. Note to the DWP: if you want to improve things for people with disabilities and their carers provide an appointment diary that runs for more than a fortnight.
I duly contact the DWP to reschedule the appointment and agree the 30th November. I know this because I write everything down as people tell me things. My perimenopausal brain can’t remember things like it used to and I don’t trust the buggers. Wonder Boy requested that I support him with his appointment which is fine, I can rejig my week to accommodate that – which basically involves me accepting that those hours are lost in my working week and that I will probably have to work at the weekend. I also have to notify his carer support worker who would normally work with WB on a Thursday – more phone calls to care agency, double checking with care worker, more tasks to remember/do. I, in retrospect stupidly, booked a social work visit for early that morning to avoid having to take more time off. Double booking Wonder Boy in for appointments just does not work – lesson learned.
Wonder Boy really didn’t want to attend the DWP appointment so there was much cajoling and over friendly “it’ll be ok’s”. On arrival – city centre location, expensive parking duly paid – we were told that we had been booked in for the following week and not the 30th November after all. I explained that I wrote down the date as the appointment was made, but ‘computer said no’… We had to take a seat so I could claim back the expensive parking, or at least fill in a form which will need to be processed. With WB grumbling about wasting his time next to me, I looked around at the others in the waiting area. No one was there alone, all had support. Almost everyone had a physical disability, all looked pretty fed up. We filled out the form asap – WB had to sign it which almost tipped him over the grumpy edge and we left, happy to be out of such a depressing space.
The day unravelled after that, complicated by the fact that on the same day my partner had to attend a family funeral. I wasn’t able to support him through that because of the appointments, not for the first time and certainly not the last time I have had to choose between attending appointments and being there for people I love. The people I love draw the short straw most of the time. We really pushed our luck and went shopping with family which should have been lovely, but was all a bit too much as the subsequent minor meltdown in a restaurant showed. It is a testament to my wonderful step children and their extended family that this is taken as part of life’s rich tapestry but on reflection of such events it does cross my mind that they might wonder why the best boyfriend in the world sticks around with us. But we got through it.
Fast forward to today and appointment attempt number two. Wonder Boy’s carer support worker duly notified that he is not needed until later, more admin and off we go. It was much quieter this time and we were greeted by no less than 6 members of staff staring at us from behind what appears to be bullet proof glass. Wonder Boy does NOT like to be stared at so I am desperately hoping they will stop looking at us. WB had to produce some ID and sign forms. I had booked the parking through a phone system so WB had heard me booking 90 minutes and was strongly and swearily declaring he was not going to stand for this for 90 whole minutes. I adore him when he’s like this, his honesty levels reaching heights only us neurotypicals can dream of 🙂
We were kept waiting for a few minutes. WB does not like to be kept waiting and so grumpiness was quickly setting in. I over compensate by being super cheerful, so much so that I begin to hate myself. During our wait, I reflected on what an absolute waste of time all this was. But it’s more than that. A middle-aged man with Down’s Syndrome came out of one of the assessment offices with a carer saying “It wasn’t that bad, it was ok, it’s good now it’s finished, it wasn’t that bad, was it?” My heart went out to him that he had clearly been worrying about the appointment and was so glad to be allowed out. I wonder if the assessor viewed this person as being eligible for work. A young woman came in with a support worker from the local authority, she tried to book in but had to explain twice that she was deaf and could not hear the instructions. A husband pushed his wife in her wheelchair to reception where she was asked to sign the form even though she had clearly had a stroke or something similar which rendered it difficult for her to sign anything. They were an hour early because they had to travel – there are no tea/coffee facilities so they left the building in search of somewhere less gloomy to wait. The inconvenience, anxiety and sense that we were having to show proof of the things that you didn’t want to define you as a person, were palpable.
We were eventually ushered into an office by a really lovely assessor. She explained that she was a nurse and that she had read the notes, sensing WB’s lack of enthusiasm for the assessment she promised we would be processed asap and sent home. She asked WB when he received his diagnosis, he has no idea as he was very young at the time, so I explained that we had an initial diagnosis of ataxic cerebral palsy when WB was about 8 months old following referral at his 6-week developmental check, later a diagnosis of Deficit in Attention Motor Control and Perception (DAMP) and at about 5 or 6, Autism, much later at 18 he was accessed as having low IQ but not quite low enough to be classified as LD for service provision purposes. “Ah, I can’t do this assessment then” said the lovely nurse “Because he had a diagnosis of Ataxic cerebral palsy that makes you a complex neuro case. I can’t do those.” I tried to explain that this was a very early diagnosis, that you wouldn’t know WB has CP now, that this does not affect his activities of daily living unless he is to be a professional runner, in which case he has a slightly unusual gait…. “No, sorry, I can’t do this. I’ll have a word with a colleague.” She left the room.
During her absence WB told me what an absolute “fucking waste of time” this is, whilst totally agreeing with his every word, I focused on assuring him things would be ok and that this was just a blip. “I’m not fucking coming back again” he declared. I hoped the people in the waiting room couldn’t hear us. The lovely nurse came back and said that a colleague could see us, that the colleague was lovely and more importantly, quick, so we would soon be on our way home. Wonder Boy said “fuck”.
We were kept waiting even longer in the depressing waiting room, even the Yucca had given up hope and was wilting in the corner. WB grumbled about not enjoying this, me FORCING him to go through this rigmarole, him having plans for the day that didn’t involve sitting in a bloody waiting room, that the nurse had said her colleague was quick, but he wasn’t bloody quick as we were still waiting. I promised him a Costa if he would just go along with the assessment. He only drinks Americano’s so this was a big deal for me, £2.65 for a bloody black coffee – daylight robbery.
Even I had given up being overly cheerful and was beginning to feel a bit fed up. “Oh, and don’t mention my autism” says Wonder Boy. “I have to mention your autism, love, that’s what the assessment is about.” “Well, I don’t want you to, it’s nothing to do with anyone else, least of all these strangers.” I gently tried to explain that he liked having the £75 a week, that it meant he could do stuff he wanted to do like other 21 year olds, that we all had to do stuff that we didn’t really like sometimes, that this was just part of being an adult. He didn’t buy it. I’m fed up being thought of as the bad guy in all this by WB.
We were called in. Another nice assessor, who explained why the assessment was going ahead. “Let’s list your conditions” said lovely assessor. “Or not” says WB. This is going well thinks I. Once we got over the whole, so what is your disability game, WB decided he wanted to answer all the questions himself. No problem, he should be actively involved in his own assessment. “How did you get here today?” asks lovely assessor. “That’s a stupid question, what’s that got to do with anything?” Maybe I’ll get something from Costa too…
Wonder Boy is just warming up though. Assessor: “Do you use the bus at all?” WB: “Yes” Me: “He uses the bus at college as part of travel training, but not independently” I had to chuck that in, even though WB glared at me, but WB is right, that is a stupid question to someone who is a rigid and literal thinker. The point of the assessment is to determine the extent that an illness or disability affects activities of daily living in order to make a judgement about capacity to work. WB’s ‘yes’ implies that he is an independent traveller who can get himself from A to B on public transport. This is far from the truth. He could get himself from home to his Nan’s house – one stop – where his Nan would meet him at the bus stop because he has a tendency to wander off and get lost, not all the time, but enough times to make his family worry. He has travelled on the bus to his Nan’s twice in his 21 years. Technically, he uses the bus…
Assessor: “who is at home?”
WB: “I don’t know, I’m here, I haven’t got super powers”
Me: “He means who lives with you at home?”
WB: “Why does he need to know that? Does he think I don’t know? I’m not stupid!”
Assessor: “who cares for you?”
WB: “Mum and Steve my support worker”
Assessor: “Anyone else?”
Me: “And Howard”
WB: “Howard isn’t my carer”
Assessor: “Who is Howard?”
Me: “He is our PA, we have him on a Friday”
WB: “I WORK with Howard, he’s not my carer. I do gardening with him”
Me: “WB prefers to use positive language about the activities he does, but Howard is employed as a PA which is paid for by direct payments”
WB: “wish you wouldn’t make everything sound like I can’t do things Mum. I can do things, but you don’t let me, I can cook and use the bus but you don’t let me”
I’m definitely getting a Costa…
The lovely assessor leaves the room to discuss with a colleague. I am grateful that he noted my slight side to side movements indicating ‘no’ when Wonder Boy was steadfastly say ‘yes’ to some of the questions. I hate that I have to focus on the things he struggles with. WB is so much more than his deficits. The assessor returns. Wonder Boy makes a surprise announcement “Can I change something please. I said that I do things independently. I don’t, someone helps me all the time”. The assessor tapped something out on the keyboard and explained that this assessment would be sent to a ‘decision maker’ and the DWP would notify us of the decision in three to four weeks.
So, if you are thinking that claiming disability allowances sounds like fun or that we all get £25 grand a year, a free house and live the life of bloody riley I challenge you to take WB to his next assessment and see how you like it.