Here’s an example of the way the Disability Living Allowance to Personal Independence Payment system “works”:
Sean (name changed) is in his 50s. He has an Asperger’s diagnosis and serious depression and anxiety. He struggles to leave his house. He relies on his partner to do much of their shopping and to make many of the endless phone calls that people who must navigate the benefits “system” must make. His partner has a schizophrenia diagnosis.
Sean is in the support group for Employment and Support Allowance. I’ve attended two of his ESA work capability face-to-face assessments in the last few years. Sean and his partner pay the bedroom tax on their so-called “spare” room. They also pay council tax now, because their council tax benefit has been cut. The mail that pours into their letterbox from the DWP and the council is pretty much non-stop. Last year, Sean even received a letter from the DWP which asked him to consider attending so-called work-focused interviews at his local jobcentre. People in the ESA support group are supposed to be exempt from job-finding requirements and activities, but still Sean got that letter. “They are relentless,” he says most times we speak. Indeed.
Now he’s stuck in the shambles that is PIP. Earlier this year, Sean received a letter from the DWP which said that his Disability Living Allowance was about to end and that he should apply for the new Personal Independence Payment. This news and new pile of forms was upsetting enough in itself. Sean says the income that he received in DLA made up an important part of the money he relies on to survive. The thought of losing that money or even part of it was of great concern. He found the PIP application form daunting, but filled it in with the help of a local advice group. The form was submitted. Next, he waited to hear from Capita with a date and time for a PIP face-to-face assessment.
As far as Sean is concerned, this part of things has been dire. Sean says that early in April, right out of the blue, he got a call from someone at Capita who asked if he could attend a PIP face-to-face assessment the very next day. This was not a good approach to make to someone who has Asperger’s and depression, and who struggles with sudden change. Sean was certainly rocked by that call. He and his partner rang to tell me about it. A next-day appointment gave him no time to prepare. For the ESA assessments we’ve attended, Sean’s arranged in advance for his father-in-law to drive him to the assessment centre. He’s also made sure that someone could attend with him. Surely ringing a person with Sean’s health history and asking him to attend a feared assessment the very next morning was reckless. In the extreme.
Sean and his partner asked Capita to make another appointment for the face-to-face assessment. That appointment was set for the third week of April. Sean attended that appointment with his wife. They called me afterwards. The appointment had not gone well. Sean said that he found the assessment very stressful. He told me he got so upset that the assessor stopped the meeting and suggested a home assessment might be a better idea. Sean said that he went home to wait for contact about this home assessment. Weeks passed. He heard nothing. In the meantime, his Disability Living Allowance money stopped. He called me about that as well.
This is the point where people start to find the system impossible. The money stops. A claim is in limbo. People can’t get answers. Nobody is around to help. Nobody knows where they are in the chain. Things are challenging enough if you’re not depressed and anxious. You get one part of the system talking about home assessments and another part talking about nothing of the kind. I called the DWP last week myself to try and get a grip on these proceedings. The person I spoke to said that Sean’s report from his face-to-face assessment with Capita was with a DWP decision-maker. There was no telling when a decision on his entitlement to PIP would be in. The women I spoke to said there was a backlog. He might have to wait as long as 12 weeks to hear. Of course, there was no money in the interim. It seemed that the home visit was off the menu, too – or had actually never been on it. The person I spoke to said that Sean and his GP would need to propose a home visit. We were no further ahead there.
Ditto for Capita. On Thursday morning last week, I called Capita’s PIP number to see if anyone there could shed some light on things. I explained the situation to the woman who answered, said I wanted to talk to someone about Capita’s formal systems for assessing claimants with spectrum and mental health conditions (that’s assuming that they actually have formal systems – I have my doubts about that, as you might imagine) and that I planned to write about this situation. The woman I spoke to said she’d get a manager to call me back. It’s Monday morning now and I’m still waiting for that call. Perhaps this post will speed things up. In the meantime, Sean goes without. Politics concerns itself only with leadership contests. What a total shambles this is.
This Wednesday, join Disabled People Against Cuts in the national day of action against the Personal Independence Payment “system.” Details here.
Thanks, Kate, for your unrelenting pursuit of protection and justice for the vulnerable. I suppose that we all have to be as relentless as we can, though my back is playing me up to day. (I suppose that ties in with the feeling of being undermined by the DWP’s relentlessness.)
While your blog might not be in an ‘hall of fame’ it deserves referencing space in my latest blog post for the Kilburn Unemployed blog: KUWG statement in support of Jeremy Corbyn’s mandate as Leader of the Opposition
I’ve been helping a friend with his claim. He due to mental and physical illness failed to attend and ESA appointment. We made a fresh claim in December 2015 for ESA and PIP he’s just received his first pip payment …………..7 months later, he is still waiting for a home assessment from ESA. He has pride my pal, he’s been trying to manage on £200 a month DLA obviously not doable, I watched him get lower and lower, I was able to persuade him to have a chat with his Dr who to be fair has been brilliant ( despite a letter from her to ESA as requested explaining why he needed a home visit, they ESA got back to him and said it wasn’t reason enough!) Major depression by now, a previous suicide attempt plus the worst case of IBS i’ve ever encountered ‘wasn’t a good enough reason to ‘ need a home visit .Flabbergasted wouldn’t cover it .
Autism is particularly difficult with these assessments.
They have mental and physical criteria but little by the way of acknowledging neurological difficulties or how it can change (e.g as we get older, in positions of stress, as a result of unemployment, if we attempt to work without adequate support, when we face changes in out lives, or just from day-to-day). It’s also especially fun when assessors pull autism myths out their a** to challenge your accounts on how it limits us, when they take advantage of your communication problems, or when they see meltdowns (which can cause functioning problems and pain for days afterwards) and stimming as you being awkward rather than as symptoms of your disability.
I’ve been denied PIP and it took a lot to get on ESA – I’m sure part of their having denied me PIP and ESA is due to the fact I’ve no support…there’s no support! I was given a diagnosis of Autism Spectrum Disorder and ADHD, all I got was a letter suggesting learning about it online – without any support via NHS or social services I don’t have ‘proof’ that it prevents me from working or causes difficulties day-to-day.
I’ve only had my benefits stopped once, in eight years on JSA or ESA, that was a result of Work Program messing up, I had the sanction reversed with a lot of effort and help from CAB. I still went two months without income, as I can’t use a phone I couldn’t call DWP to find out what was happening for a few weeks and DWP wouldn’t talk to CAB initially, if I hadn’t been mentally strong enough to have been able to go to CAB for help I’d have lost my home and gone hungry. But CAB do too much as it is, I don’t feel I can approach them to attempt to help with benefits issues and I don’t know where else to turn to know what to do if a situation like ‘Sean’s’ happened to me.
I’m not as severely affected as ‘Sean’ or others – although without support to get back into work it means ESA is my only option to survive – that I’ve had it easy so far *knocks on wood* has me feeling a little survivors guilt with stories like this.
Almost unbelievable really that in a few short years we have come to this.
People with serious health conditions left to fight it out with an aggressive so-called ‘welfare’ system. One that deliberately leaves people without money for months at a time without giving a damn. No wonder so many people at the sharp end of this voted for Brexit.
True, isn’t it. Made me smile (not in a good way) in recent times to see various worthies wringing their hands and saying – “why are so many people pissed off? We had no idea,” etc etc.
Ahem.
Problem now is the weakness of any political opposition. The Tories have righted their listing craft, for the time being anyway. Labour seems to want to sink.
Add to Tony Blair’s list of war crimes his unleashing investment banker David Freud upon benefit claimants, and the lies that ensued from that statistical ‘respray’ by which he declared more than 2/3 Incapacity Benefit claimants ‘illegitimate’ without even learning how Incapacity Benefit tests were really conducted.
“‘Perhaps David Freud’s greatest respray job was the stockmarket flotation of Eurotunnel. Not only did he come up with a clever way to make shares in Eurotunnel plc seem more than a wing-and-a-prayer speculation, he managed to flog the stock at the height of the stockmarket crash of 1987…It was not particularly surprising that John Hutton, the Work and Pension Secretary, should turn to this particular ex-banker when ordered by Tony Blair to come up with something snappy on welfare reform.’ — The Independent ”
Source: https://www.amazon.co.uk/Freud-City-David/dp/1903071100
Of course, Euro Tunnel with its “rose-tinted projections” was something of a disaster.
One of the major reasons that I gave up being a social care worker ten years ago was that I realised that with inadequate in-service training — due to council cuts upon council cuts — and the DWP routinely screwing up my Jsa top-up on part-time earnings, it was more likely that I would make mistakes and likely get punished for it beyond the realisation that my failings had caused people harm. Yet when ‘key decision makers’ routinely screw up by accident or design, they continue doing so with impunity.
It’s a good point. Who are these mysterious decision makers? Who are they accountable to? If you as a decision maker decided against, say, 100 ESA or PIP applications and 80% of your decisions are turned over at tribunal, shouldn’t you be performanced managed into something else? Or out the door altogether?
Maybe there aren’t any DMs. Maybe there’s just some machine punching out random answers. If people can go from zero points at assessment to the support group of ESA at tribunal, random is pretty much the word.
When I was commenting earlier on this blog in relation to ‘key decision makers’, I had forgotten that ‘decision maker’ had acquired a specific meaning within benefit assessments for the DWP.
While what you write about DMs is perfectly valid, Kate, I was referring to ‘key decisions’ as being about, say, the decision to headhunt a ‘welfare reform guru’ who has not got a clue about the lives of the people they are meddling into.
Such ‘key decision makers’ are likely to have gone through a very exclusive education system that has shielded them from any kind of contact with truly vulnerable people, and of course there are varying gradations of vulnerability.
My own 2005 transition from being a Basic Skills Learner Support Volunteer to adults with learning difficulties to being a care worker for adults with learning difficulties — one of whom had a paranoid-schizophrenic diagnosis, another who had such an extreme speech defect that deciphering what he said was a very labour-and-time-intensive task. Both had ‘Care Programme Approach’ (CPA) status attached to them, and that required me to read the two-to-three page ‘Essential Information’ sheets about them in unpaid time before engaging to do the 3 hour shift with them.
Their CPA was set up by a social worker whose further contact with the ‘service user’ was subsequently reduced considerably while my care servicing charity employer’s case managers — with lower level qualifications — were left to administer the care contacts, using care workers paid £7.81/hr for shifts of about 3 hrs at a time. Of course, that was luxury compared to now — LB Brent, say, has reduced the contact time of shifts to as little as 15 mins!
I lacked the auditory abilities that would have streamlined my ability to decipher the speech-impaired service user’s conversational input, but one of his more fluent interpreters explained to me why the service user would greet me so warmly. ‘Pete’ — the service user — had been asked by someone, “How are you?” and given his reply.
‘Pete’s’ questioner went on, without having made attempt to verify exactly what Pete had said. “That’s great, Pete! You must be really proud of yourself!”
What had Pete actually said though? “My mum’s just died.”
“The thing about you, Alan,” my colleague concluded, “is that you care. A lot of cover care workers who deal with Pete just don’t care, and marshal him about.”
Pete was in about his early 40’s, and what speech therapy he had received at school was far-too-short-lived, reducing his later ability to communicate. The cessation of his speech therapy had been a ‘key decision’ in his life.
The 2008 government decision to limit CPA to people with severe mental health needs would have been yet another ‘key decision’ in many vulnerable people’s lives. Barren Freud has said that the most vulnerable people facing welfare reform matters would be protected; yet ironically both ESA and the limiting of CPA happened in October 2008. Administering one ESA or PIP claim application is now extremely labour intensive. What social worker has the time to do one of them?
Further to what I wrote about the very exclusive schooling that our ‘key decision makers’ have gone through, is the matter of ‘social cleansing’. They might think that utopian. Yet Glaswegian community social worker wrote with reference to the segregation of rich and poor in 2008, It is the powerful, affluent elite who tell the government and the media about poverty while those who endure it are shoved aside.
Maybe social cleansing helps some ‘key decision makers’ have more blissful sleep, never encountering signs of the damage they have caused?
There is no way that Sean’s DLA should have stopped until he has received a formal decision in relation ot the new PIP assessment. Even if (as unfortunately is happening with many people) the PIP decision is not entitled, the Transitional Regulations state that DLA payments run on for a further 4 weeks (reg.17(1) http://www.legislation.gov.uk/uksi/2013/387/regulation/17/made)
The only other reason DWP could point out for stopping DLA would be if he’d not made a PIP claim (which he clearly as) or if he’d failed to attend an assessment or failed to provide information required (which he hasn’t). See reg.14 http://www.legislation.gov.uk/uksi/2013/387/regulation/13/made
1) Seek expedited decision re: PIP claim
2) Seek urgent reinstatement of DLA claim -pending (1)
3) Make a formal complaint about the above
4) Give precise timescales in respect of response e.g. 14 days
5) In meantime, consider referral to advice service who, if no response within 14 days above, can refer Sean to CPAG who can lodge Judicial Review on unreasonable delay grounds http://www.cpag.org.uk/test-case-referrals
Ace Paul that’s excellent thank you
This is so awful. I feel so sorry for poor Sean. I’m going through this with my 17 year old son who has to come off DLA and go for an ATOS assessment next Tuesday. He has ADHD, dyspraxia, Autistic Spectrum traits, all diagnosed at the age of 5. Always had a statement of special needs and never managed to stay in mainstream school due to smashing up classrooms and hitting people. .I have numerous previous medical, educational and psychiatric reports all agreeing that he has these conditions and will not improve. This is the way he is, he will not get better, but the woman on the phone at the DWP said none of these reports can now be taken into account! He has barely been out of his room for two years because all medical assistance ended when he finished at his special school and now he is officially ‘AN ADULT” he is supposed to be miraculously cured and get up off his arse and get a job. Well he can’t because his brain does not work that way. He cannot compete with others who have not got his condition. He does not write clearly, and could not possibly complete the forms so I had to do it for him. He self harms and threatens suicide, smashes holes in all the doors of our flat, and is up all night every night shouting and talking to himself. Our GP today was no help at all as he said my son is now too old to require medical help or any kind of state support. I am at my wits end, as a single parent, not only will we lose his benefit, I will lose Carer’s allowance as well and the help with council tax and rent which I have been receiving. I can’t possibly get a job now he has no educational one to one support (his special school used to pick him up and take him there and back, but now there is nothing.) We are finished, and I cannot see any way out of this.
Against such a national backdrop, it’s great to know of a ‘key decision maker’ — at local level at least — supporting local residents and becoming better informed at the same time! LB Brent Cllr Michael Pavey’s reaction to a resident’s DWP interview
I get support group ESA for exactly the same reasons I get DLA. When I am refused for PIP as I fully expect to be seeing as ATOS have refused me a home assessment twice despite strong medical evidence, I see no reason why when my ESA is reassessed next July, they wouldn’t put in the WRAG. As a new WRAG claimant I would drop to £73 p/w at which point I will no longer be able to afford the rent contribution, water rates council tax, gas and electric oh and um, food. In short I will be homeless. I have been homeless before and have no wish to be so again. At that point I will sell my possessions, take a tent to a beautiful place, eek out as much life as I can on the money for me and my precious dogs. When I can no longer feed them I will have to take them to the RSPCA and then I will end my life.