Endless, endless disability assessments while support is destroyed. These assessments NEVER end

This ought to tell you something about the criminal waste of time and money that is our disability assessment system:

As readers of this site will know, I’ve been following the benefit assessment experiences of Sean (name changed), a 53-year-old man who has Asperger’s and severe depression and anxiety.

I’ve listed below some of the benefit assessments and reassessments – and associated DWP blunders and screwups, which is in many ways the real list – that Sean and his partner (who has a schizophrenia diagnosis) have experienced in recent times. They’re still in the middle of this non-stop assessment, of course. There literally is never a time when they’re not in the middle of one benefit assessment or another. They’re always filling in forms, waiting to be called to assessment, being called to assessment, going to assessment, waiting for assessment outcomes, appealing assessment outcomes, or being told to fill in a new set of forms.

But here’s the point I really want to make. There really isn’t any sort of service around that might change or improve their circumstances in any way. Quite the reverse. All of this couple’s support has been removed in the last few years. They had a social worker a few years ago, but lost that service because council funding was cut. The two used to attend a community mental health service (that’s where they met), but had to stop going there, because services were cut. They used a local welfare advice centre for some support with filling in application forms, but just received a letter saying that social security support at that service will end, because the housing association that funded part of it is pulling out. They are at the point where there is literally nobody around to help or to accompany them to face-to-face assessments. We get all this waffle from the DWP and government about getting people back to work and blah blah blah. At the same time, all familiar, useful and complex support is removed.

Still, the DWP assesses and assesses and assesses these people. I don’t know why the department expects things to have changed from one assessment to the next. A torrent of mail and paperwork pours through this couple’s door from the DWP and the council and their housing association. Some of the letters and processes don’t even make sense, as you’ll see below.

A brief(ish) list, then:

In the last few years, Sean has:
– been called to three (now four – he just got another call) ESA face-to-face assessments. I attended two of these assessments. Sean says he was called to more ESA assessments, in the couple of years before we met.

– had to fill in the complex application papers, source the relevant medical information (although that medical information never changes and his GP’s surgery charges for medical information) and taken and made no end of phone calls with Atos and Maximus about attending face-to-face assessments.

– been told to apply for ESA and attend another face-to-face assessment before he’d heard about the outcome of a previous assessment. No decision was ever sent through for that earlier assessment.

– just been called to yet another ESA assessment, although he’s still not heard about the outcome of the assessment before last. He had to fill more forms in and then he got a phone call asking if he could attend a face-to-face assessment that coming Saturday. He couldn’t, because he had nobody to accompany him or drive him to the meeting.

There is also the fact that Sean continues to be called to these face-to-face ESA assessments despite his struggles to attend face-to-face assessments because of his Asperger’s. There should be a record of that fact somewhere at the DWP, because earlier this year, a Capita PIP assessor stopped Sean’s face-to-face assessment for Personal Independence Payment, because he was too upset and anxious to handle it. Still, he is rung to see if he can attend face-to-face assessments. He’s called at very short notice, too.

Then, there’s the Personal Independence Payment.

This year, Sean has:

– Received letters which informed him that his Disability Living Allowance was ending and that he needed to apply for the new Personal Independence Payment (Sean’s partner also received those letters. She’s been called to face-to-face assessment. She cancelled one appointment, because she was so worried about it and had nobody to accompany her. She’s got another appointment. She wanted to ask for a home visit or a paper-based assessment, but was worried about the cost of the GP medical information that she needed to support those applications).

After the first letter, Sean:

– received another letter a fortnight later warning him to apply, because his DLA would stop if he didn’t

– received a phone call asking him to attend a PIP face-to-face assessment the very next day

– spent time on the phone trying to sort out another day for the face-to-face assessment, to give him time to arrange for someone to drive him to the meeting and to accompany him.

– attended a face-to-face assessment which the assessor stopped, because Sean was very stressed and upset and clearly could not handle the meeting. Mention was made at this assessment of setting up a home visit.

– made numerous calls to the DWP and Capita to ask if a home visit for his PIP assessment would be set up, because of his obvious problems with face-to-face testing (I made some of those calls myself).

– found out that Capita would not organise a home assessment for him – he’d need to do this himself with his GP. So much for reasonable adjustment.

– found out that his DLA was stopped anyway – at least six weeks before he was informed about the outcome of his PIP application

– made as many phone calls as he and his partner could stand to try and find out why his DLA had stopped

– received a letter several weeks later saying that the DWP had turned his PIP application down, because he failed to comply at the face-to-face assessment that was cut short because of his anxiety.

– had to apply for a Mandatory Reconsideration to challenge the decision to turn down his PIP application. Rang his GP about getting medical information to support his Mandatory Reconsideration and his request for a home assessment. Found out that a letter would cost £15.

– got a letter from the DWP which said that the department had already done his Mandatory Reconsideration – BEFORE he’d asked for it and months before the decision about his PIP application was even made (the letter upheld the DWP’s decision to deny Sean PIP).

– wrote to the DWP asking the department to set that rogue Mandatory Reconsideration aside and to start again with a proper Mandatory Reconsideration that he could contribute to.

– received a letter in response which said No, the rogue Mandatory Reconsideration and decision to deny PIP would stand.

– produced a letter under real pressure to request an appeal of that decision at tribunal. Sean only had a couple of days to do this, because the DWP said he had to meet the application deadlines set out in the rogue Mandatory Reconsideration letter he had received several weeks earlier.

This couple has also:

– Received letters and phone demands for the bedroom tax (the couple must pay the bedroom tax on their one small “spare” room.

– Received demands and reminders for council tax because the couple’s council tax benefit has been cut

I could go on. I really COULD go on.

The bedroom tax and council tax payments still go out. Sean is waiting to hear about his next ESA assessment date and a date for his PIP appeal. His partner is about to attend her PIP face-to-face assessment and hoping she can find someone to go with her.

You see my point. These people are at the mercy of a runaway bureaucracy that never relents and is often just nonsensical. You may not have any sympathy for these two as people – such is the cold age we live in – but you ought to have some sympathy for yourself if you’re a taxpayer. Your money is being squandered on this recursive rubbish.

And I make the key point again. There really isn’t any support around for these people. There is plenty of money in the system for endless benefit assessments and the private companies that run them, but there isn’t any for the complex support services that might add to people’s lives.

God only knows how many thousands of times this sort of story is replicated across the country.

15 thoughts on “Endless, endless disability assessments while support is destroyed. These assessments NEVER end

  1. Oh Kate, as you know I’m involved with a voluntary project in Leicester, and I unfortunately, can demonstrate this type of perpetual persecution is as very common as you suppose.
    We at DEAEP are running ourselves ragged with cases like this, as volunteers we offer support for disabled people attempting to access the benefits they’re entitled to, but there is only so much we, as disabled people ourselves can do. In truth I’ve been forced to take a back seat as the stress of those I worked with was so great it severely impacting upon my health. My colleagues are desperately trying to manage the case load but because of the need, we’ve been forced to limit our work to ESA & PIP claims, and appeals only.
    The situation is getting systematically worse and I truly despair of any positive changes in the near future.
    Thank you for your ongoing work to raise awareness of the issues, keep well x

  2. Cheers Jayne. You raise a really important point – there is such a problem finding support now to get through these unbelievably twisted and paper-heavy systems and the people who are doing the work like yourselves get run into the ground trying to keep on top of it. There is literally nobody around in some parts of the country and it’s very easy to break down if you’re trying to do the support work.

    • I can’t handle my own ESA/PIP forms or assessments or tribunals – I become so depressed and anxious that I stop talking, showering, eating, moving…. I have a wonderful friend who has helped all 7 times, and come to tribunal with me 6 times (I’ve just had another assessment). I’ve won every time so far.

      I can, however, handle other peoples’ paperwork and assessments and tribunals, so I do. Currently, I’m helping someone apply for ESA for the second time. She almost certainly has schizotypal personality disorder (paranoia, delusions, auditory hallucinations, etc.) but was sectioned as a teenager, which traumatized her so badly that she refuses to see any mental health workers (for the past 22 years). So. no diagnosis, no consultants, no treatments, no meds. She has fibromyalgia, and was referred to the pain clinic, but they can’t treat her until her mental illness(es) are more under control. Argh. She has severe anxiety, and she’s so agoraphobic that she hasn’t left her flat since her dog died, 4 months ago… Oh, and she’s diabetic, but she’s pretty good at managing that, as long as she’s…not “away. We considered sectioning her for her own safety after her dog died, but to be honest, that might kill her too.

      The first time we did the ESA application, we filled in the forms and then I accompanied her to the CAB to have them look the forms over. After 15 minutes she ended up under a desk, rocking and humming, completely in her own world. I only managed to get her home by turning off the lights, talking her down for an hour, wrapping her completely in a blanket, and then getting her into a taxi.

      Her first ESA assessment, which I couldn’t go to because my chronic pain was flaring, went the same way (her other friend went with her). She was viewed to have refused to have complied with the assessor (although the friend tried to answer the questions for her). MR didn’t help. At tribunal she did the same thing, and they appear to have assumed that she was faking it. She definitely wasn’t. I’ve known her for years, and this is what she does when she gets very distressed.

      We’re giving it another try. She’s finally agreed to have her trusted long-term GP (who is retiring in January – ack) refer her to mental health services, but has asked for them to promise not to section her or force meds on her before she’ll go and see them. This is causing issues. We included the referral letter with the application. Assessment is on Thursday. I think she’ll almost certainly fall through the cracks again. Her other friend, her GP and I are at our wits’ end.

  3. Sadly the list of encounters with statutory authorities and the never-ending assessments seems to be the norm. There is no justification for it when dealing with people who have life long conditions that do not change or get worse. About 10 years ago I remember talking to officers from the Audit Commission who were looking into these systems. I suggested, for those who had life long conditions, it should be enough to allow an appropriate person (eg NHS medical consultant) to just tick a box to indicate level of need/functioning etc. I suggested that such a system would probably work for say 90% of people and that resources could then deal with the 10 % of cases that were disputed. The money they saved on all the bureaucracy/assessments would ensure that the funding availble actually went to people with disabilities. Health in the disabled would also benefit once the stress of ongoing assessments were removed. Needless to say the Audit Office folk said that such a suggestion could not be considered!

  4. In terms of ‘life lessons’, I believe the most important module I attended at uni as a mature undergrad, 1993/97 after a backdrop of decades of being a disabled jobseeker was ‘Law & The Music Market’.

    Fundamental to that module was work on contract law and the concepts of consideration and bargaining power. Consideration as a contract law concept involved, “If one party does such and such for the other party, what will the other party do in return.” We learned that contracts drawn up when bands were straight from the dole queue in, say the Thatcher years were later successfully challenged in courts of law. The bands had previously handed over publishing rights to unscrupulous exploiters for too little promotion, too large an expected output and too great a territory, all because they had too little bargaining power and too little legal advice at the start.

    The smear stories against benefit claimants and allegedly bogus disability benefit claimants have since taken their toll in increasing public consent for the oppressive retesting regimes.

    And I believe that the National Audit Office etc need to be challenged regarding the inverse proportion of expectations imposed upon vulnerable people in relation to UK government obligations under UN Convention on Rights of Persons with Disabilities, etc. I’m sure the National Audit Office would love to say that there are “insufficient funds” to support “life, liberty and the pursuit of happiness” for disabled people, just as successive American governments had led Revd Dr Martin Luther King, Jr to say in 1963 of American instituionalised racist discrimination:

    “Instead of honouring this sacred obligation, America has given the Negro people a bad check, a check which has come back marked ‘insufficient funds.’

    “But we refuse to believe that the bank of justice is bankrupt. We refuse to believe that there are insufficient funds in the great vaults of opportunity of this nation.”

    Too many people know that he had a speech proclaiming his dream without really knowing what that dream was about, and/or about the disproportionate proportions of disadvantaged groupings in the jails of the Western World.

    • Above where I referred to the disproportionate numbers of disadvantaged groupings in the jails of the Western World, I was referring most specifically to the formal criminal justice systems. Under a Labour Government, Johann Hari wrote: Crime is going to rise – unless we get liberal: The Government can continue to posture as ‘tough’. Or it can get smart, and in The real solution to our prisons crisis he wrote: “If you came with me to, say, Deerbolt Young Offender Institute in Durham, you would identify one obvious problem before all others: the kids there can’t read. Some 60 per cent are unable even to scrawl their own names properly. So surely we are flooding the place with teachers? The Howard League for Penal Reform went there – and found that due to the financial strain on prisons caused by overcrowding, less than half of these illiterate kids were getting any schooling at all.”

      Yet there are also virtual prisons, and the Social Model of Disability highlights that. (See Debbie Jolly’s DPAC article A Tale of Two Models: Disabled People vs Unum, Atos, Government and Disability Charities.)

      As a person with a learning difficulty I have been fortunate in receiving extra schooling so that I could go beyond writing my own name. And the diagnostic tests I did not receive till I was 57 from council learning disability services and already an ESA Support Group claimant surpassed the helpfulness of anything I ever got from jobcentre disability services as a jobseeker. Yet the extremely selective ‘bottom percentile of population’ required for formal ‘learning disability’ status norming bar me from council services for learning disabled people that would allow me a properly incisive dyspraxia diagnosis — costing about £800 — free of charge.

      And the DWP and council benefits departments regard me as ‘guilty until proven innocent’ of co-habiting or subletting benefit fraud when a property guardians licensee moves into my street address. I describe such treatment as harassment and will complain formally about the matter.

  5. Just a few years ago, this treatment of the disabled would have been regarded as a national scandal. Angry headlines would have appeared in the press, concerned debate on television. Now it is simply accepted.
    This shows just how far we have come down the path of ruthlessness and cruelty.
    All in the name of so-called austerity.

  6. Thanks for keeping us informed of all this utter nonsense and persecution going on in this great (!) country of ours, Kate. Solidarity from Derbyshire Anti Curs Campaign. my friend. Keep doing what you are doing xx

  7. My Aspergers, ADHD, unipolar, depressed, anxious son has just been refused PIP after a Tribunal. I’m out of work, my husband works 65+ hours a week normally, but has been on ESA for 5 weeks. We’ve been keeping our son, paying his rent, buying food, etc since January. I now have no idea what we’re going to do. I went to the Tribunal with him, but had a migraine and there’s so much I should have said but didn’t. All the evidence was in the paperwork – 189 pages of it. They awarded him 4 points! He can’t cook, can’t budget, doesn’t leave his flat unless someone is with him, can’t read a bus timetable, can’t cope with people, can’t shop on his own, but he gets 4 points! We’re lucky in that, so far, his GP hasn’t charged him for letter writing. He failed his 3rd year of Uni because of the stress of waiting for the Tribunal. I’m sat here crying – not just for him, but people like Sean, for whom this small amount of money makes so much difference.

  8. I believe that Maximus make the decision on whether to call people for a face-to-face assessment, not DWP. I guess that they are paid partly according to the number of f-t-f assessments they do. If so, there is a clear conflict of interest: a financial incentive in the decision-making. This could be the basis of a legal challenge; certainly the media may be interested.

  9. Re autistic spectrum conditions, one of the ways in which the system is skewed is that the person with autism has a high IQ while proneness to anxieties and panic attacks are disregarded by testing systems even without the incursions of ‘welfare reform’.

    I have dyspraxia that has similar anxiety and panic attack issues. And of course, the way that agents of ‘welfare reform’ operate does not lend itself to joyous scenarios.

  10. I’m going to my second ESA assessment tomorrow, I’m scared and frustrated at this process, I’ve rheumatoid arthritis and have had for 11 years. Im so worried about the outcome I don’t know what I’ll do if I lose this support

  11. Pingback: TIME TO TAKE THE WHOLE BENEFITS CLAIM SYSTEM DOWN AND START AGAIN. This is mayhem. Seriously. | Kate Belgrave

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