New Website

My blog has now moved to my website, www.aidaaleksia.com. New posts and updates on my book can be found there.

My book is now available for sale.  Why We’re Not Benefit Scroungers can be bought as a pdf for £1 from my website.  Purchasers who buy the book before 15th December, when the print version comes out, can get £1 off the price of the print version.

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The People’s Review of the WCA: a summary

Yesterday a report was released about the Work Capability Assessment for Employment and Support Allowance.  It contains many stories of poor assessments and inappropriate decisions that a person is fit for work.  Here I have made a summary of some of the problems that the WCA faces.  The full report is well worth reading and can be found at http://wearespartacus.org.uk/wca-peoples-review/

 

The ESA is surrounded by secrecy:

  • Atos Health Care Professionals (HCPs) have to sign the Official Secrets Act
  • The DWP has refused to release details of the contract between the DWP and Atos
  • Details of the Independent Tier that monitors Atos have not been released
  • Data on Quality Assurance checks are not available to the public
  • The report on improved Mental Health descriptors developed by Professor Harrington with Mind, Mencap and the National Autistic Society has not been released to the public
  • recordings of assessments are ‘only provided for the customer’s own personal use’ and will not be routinely used in appeals or as evidence of inaccuracy in the WCA
  • Data on the use of free text boxes during the WCA are not released to the public

 

Evidence suggests the ESA is not working well:

  • 41% of people found fit for work appeal this decision
  • Of this 41%, 38% win the appeal.  This rises to 70% if the claimant has a representative; some representatives claim a 100% appeal success rate
  • 72% of claimants found fit for work are still out of work 12-18 months later[1]
  • anecdotal reports from Jobcentre staff show multiple people are sent to look for work who are demonstrably too ill to work
  • appeals cost £60 million a year; the Atos contract is worth £100 million a year[2]
  • A large backlog of appeals means that the tribunal service has had to:[3]
    • recruit more judges and medical panel members
    • increase administrative resources
    • secure additional estate
    •  increase the number of cases listed in each session
    • run double shifts in its largest processing centre
    • run Saturday sittings in some of the busiest venues
    • set up a customer contact centre to deal with telephone inquiries

 

Atos HCPs are not well trained:

  • reports on training vary, but appear to be measured in days or a small number of weeks[4]
  • HCPs are not required to have a Diploma in Disability Assessment Medicine[5]
  • any training received by Atos HCPs is not recognised by the European Qualifications Regulations 2007[6]
  • The Royal College of Nurses has refused to accredit the training of Atos Nurse assessors[7]

 

WCAs are not well checked for accuracy and quality:

  • Checks are internal and are not open to the public
  • The checks are run by a company chosen and paid for by Atos
  • Professor Harrington recommended unannounced visits to assessment centres, but this has not occurred
  • the National Audit Office said that, “The current target of no more than 5 per cent of reports being graded as ‘unsatisfactory’ is not sufficiently challenging and allows the contractor to deliver a significant number of assessments before financial penalties become due.”[8]

 

WCAs have been criticised by multiple bodies and experts:

  • GPs called for an end to the WCA with immediate effect
  • The British Medical Association called for an end to the WCA with immediate effect[9]
  • The RCN has refused to accredit Atos nurses[10]
  • The Liberal Democrat Party voted unanimously for a Motion calling for the WCA to be changed
  • The High Court has granted a Judicial Review against the Secretary of State for Work and Pensions, on the basis that medical evidence for claimants with mental health issues should be obtained early in the assessment process
  • the National Audit Office criticised the DWP for not seeking financial redress for delays
  • The NAO noted “uncertainty of roles and responsibilities, poor record-keeping and irregular sitting of the Executive Management Board.”

 

Recording of WCAs is variable:

  • no information about the right to have WCA recorded, or how to request this, is provided on either the DWP or the Atos website
  • the Jobcentre said that, “There is no real need for customers to request and use the recording of their assessment.  The recording is only provided for the customer’s own personal use and must not be put into the public domain… If the customer is insistent on the recording being taken into account as evidence, these will be handled on an individual basis and the customer will need to provide consent for Atos Healthcare to share this information with Jobcentre Plus.”

 

Professor Harrington’s recommendations have not all been implemented:

  • work with Mind, Mencap and the National Autistic Society to develop better mental health descriptors has not been used by the DWP
  • Professor Harrington recommended unannounced visits to assessment centres, but this has not occurred[11]
  • there is no requirement for a claimant’s doctors to submit medical evidence
  • there is strong opposition to incorporating a real world test into the ESA assessment process
  • Atos is not required to provide data on the use of free text boxes during the WCA[12]

 

There is risk of breaching human rights:

  • a judge ruled that not requesting data from a claimant’s doctors may breach the Equality Act requirement for reasonable adjustment for claimants with mental health problems
  • the Welfare Reform Bill was not accompanied by a human rights memorandum, and there has not been any detailed analysis of the compatibility of the Bill with human rights obligations
  • conditionality and sanctions could lead to destitution, which would be inhumane or degrading treatment This is particularly problematic where disabled people are judged capable of work when in practice they cannot work; they may therefore struggle to comply with the requirements put on them.
  • The decision to time-limit contribution based ESA to 12 months has not been taken on the basis of any evidence that twelve months is a reasonable time frame in which to expect chronically ill or disabled people to have recovered and/or found work

 

Customer satisfaction with WCAs is low.  Problems include:

  • poor format of the assessment process:
    • irrelevant questions
    • lateral questions
    • lack of consideration from the claimant’s doctors
    • tick-box approach
    • increase in severity and prevalence of mental health problems as a result of the assessment[13]
    • doctors have noted that suicidal tendencies and self-harm are occurring in patients where the WCA is cited as a contributing factor
    • nearly 1000 complaints have been made against Atos so far this year
    • Citizen’s Advice Scotland has received 24 000 complaints about Atos and the WCA[14]
    • investigations have been started into 35 Atos HCPs

 

 


Where DLA falls down: Mobility and Wheelchair users

When I first applied for DLA I was refused.  I challenged this in a 2 ½ page letter that took me two weeks to write, explaining why the decision maker was wrong.  Essentially everything the decision maker had wriiten was wrong.

On mobility related issues, the decision maker said I could walk reasonably and slowly for three minutes.  The form I had filled in had various questions with tick boxes:

How well do you walk?

  • normal,
  • reasonable (e.g. slight limp),
  • poor (e.g. shuffle, heavy limp, stiff , balance problems),
  • very poor (e.g. dragging leg, stagger, need physical support)

How fast do you walk?

  • normal (> 60m/min),
  • slow (40-60m/min),
  • very slow (<40m/min)

I had ticked poor and very slow, and then explained in the text box that I shuffle, sometimes limp, and have problems with balance.  I think I mentioned weakness as well.  For the question, ‘how far can you walk (including any short stops) before you feel severe discomfort?’ I answered, 100m.  I explained that it took me three minutes to walk this far.  I also explained that I can only do this once in a day.  After that I am restricted to below 50m; any more and I would end up with increased weakness and pain and would worsen my overall state of health.

I don’t know where the decision maker got reasonably or slowly from.  I explained this in my letter, and so the reconsideration removed ‘reasonably’ and ‘slowly’ from the list of reasons why I don’t qualify for higher rate mobility.  But my ‘ability’ to walk for three minutes remained.

To me this suggests a major failing in the criteria for DLA.  To qualify for higher rate DLA, a person must be unable to walk at all, able to walk only a short way without severe discomfort, or would become very ill if walking was attempted.[1]  This is very high criteria: moderate discomfort is irrelevant – it has to be severe; short breaks in walking are irrelevant – they have to be long breaks; very slow walking doesn’t matter – if you can cover more than 50m, you can walk, regardless of how long it takes; repeatability doesn’t matter – if you can do it once, it doesn’t matter how restricted you are after that; if walking too much (in my case, covering over 50m in one go – ignoring ‘short’ breaks – more than once in a day) makes you more ill, it doesn’t count – it has to make you ‘very’ ill.

So despite the fact that I am a wheelchair and mobility scooter user, I don’t get higher rate mobility.  Not only this, but despite the fact that I cannot go out alone (except on a few local roads with my mobility scooter, which is too big to go on public transport) because I need someone to push my wheelchair, I don’t get lower rate mobility either.  This is because ‘guidance or supervision from another person’ refers only to behavioural problems, difficulties arising from being deaf or blind in a unfamiliar place, problems with talking to others or needing someone to keep an eye on you.  ‘Guidance or supervision’ does not include needing someone with you because of physical difficulties with walking.

Because I don’t get higher rate mobility, I also can’t get a Blue Badge.  But if I wish to go out somewhere in a car, I will also have my wheelchair in the back of the car for use at the destination.  This has to be got out of the car, on a road or in a car park, in order for me to be able to use it.  I have had multiple problems with doing this without the benefit of being able to park in a disabled space.  Sometimes the available parking spaces are very narrow, such that it is vastly easier to park by reversing in; but this would mean being unable to get the wheelchair out of the back.  So the wheelchair has to be got out first – in the car park, not in a space, with other cars trying to get past. Other times the car park is very busy with cars and people, and getting the wheelchair out whilst cars drive past is difficult.  When I am especially tired, I want the wheelchair to be brought round to the side of the car so that I can get straight in from the chair.  This isn’t possible if there is a car in the adjacent space; there simply isn’t room.

So I can’t get out on my own, and I can’t get out without physical support (i.e. a wheelchair or mobility scooter) but I don’t get any financial assistance with this.  Despite the time costs to the person who drives me somewhere or pushes my wheelchair, despite the costs of taxis, despite the extra cost of tickets because I need someone with me to get on public transport, despite the cost of purchasing, maintaining and insuring a wheelchair and mobility scooter, despite these costs and despite the fact that DLA is supposed to help with these extra costs that are experienced by people with disabilities, I don’t get any financial help.


[1] Other criteria for this are: being a double amputee, being blind or get higher rate care with severe mental impairment and severe behaviour problems.

If you can tweet you can work, and other such lies

Guest post from Latent Existence,

http://www.latentexistence.me.uk/if-you-can-tweet-you-can-work-and-other-such-lies/

Picture the scene: I am lying in bed on my front, with my head turned to the side. My right arm is flat on the bed, a phone propped up by my hand. The only part of me moving is my thumb, pressing the on screen keyboard. Pain is tearing through my body, what I feel in my arms, my legs and my hands is agonising. I don’t have the strength to lift any part of my body from the bed. And yet, I have one, tiny connection to the world  – I can send messages out through twitter, and I can receive replies, 140 characters at a time. This is my often my only interaction with anyone else at this point. Through twitter, I can talk to friends, take my mind off my pain and discuss something – anything else. When the pain is too much, I’ve got a support group of fellow sick people and we can commiserate about the pain.

Fortunately, I am not this incapacitated all of the time. No, much of the last few weeks I have been so energetic that I have been able lie back on a pile of pillows and type on a full keyboard for as much as a few minutes before the searing pain in my hands sets in. Sometimes, gasp, I can even make it to a different room in the house for a while.

And yet, according to Nadine Dorries MP, my usage of twitter means that I can work. I can’t get out of bed most of the time, but apparently I am a scrounger who is defrauding the benefit system.

Last September Dorries made a request on her blog for people to look out for people tweeting too much and report them to her. She also asked people to report anyone who tweeted a lot while on benefits to the Department of Work and Pensions. She went on to pick on someone who was waiting for surgery for arthritis on both feet for their prolific use of twitter.

It gets worse. There are now rumours that ATOS (The company paid to assess people, who have been known to declare people fit for work just before they die from their illness) will be checking twitter and other social networks for activity that indicates ability to use a computer for any length of time. Because, you know, that makes you fit for work. Now this may just be rumours, but it shows a huge problem with public and government attitude to the sick and disabled.

I want to work, I really do. I own a business that my father and I have built up over the last 17 months into something that has the potential to go somewhere. I started my business as a last resort, since both of us are disabled, to try and provide part time work for myself that could be done when I have the strength to do it, not strictly between 9am and 5pm. I have been trying to build up more web hosting and design work, and I even tried to carry on working from my bed when this relapse started nearly three months ago. Unfortunately I have reached the point where brain fog has killed my concentration, and pain and fatigue won’t let me keep going to long enough to finish any work related tasks.

I can write, but I couldn’t tell you when or how much I could write. I can tweet, but that’s because tweets are short, and (mostly) fit in between bouts of brain fog which stops me completing my thoughts. I can set up a website without leaving my bed, but who is going to hire me to do that when it might happen now or it might take me weeks because of my health? I could be brought a customers computer to remove viruses from, but then not have the strength or concentration to do it for days.

The fact is, I can’t work. I am not employable. If I had ANY chance at all of working, I would be desperately trying to save my business into which we have sunk time and money and worked so hard for the last year and a half. I have hurt myself trying to run my business and have had to give up and apply for ESA because I have no other choice. And yet, because I have a variable, invisible disease, I am highly likely to be deemed “Fit for work” by the Work Capability Assessment. I won’t have the strength to appeal against that and I won’t have a Citizens Advice Bureau to help me because they are all being shut down.

So I am going to carry on tweeting and blogging. I have precious little other contact with the world and I will lose my friends and my support group if I don’t. Someone looking at my online activity and judging me on it cannot see how long each blog post took me, or the pain that I have to endure to even communicate with others online. The portrayal by government and by media of all sick and disabled people as scroungers and cheats is disgusting and yet good people that should know better are taken in by it. If you think I should just lie here and be miserable while I wait to be denied my ESA, then screw you. You are the problem.

More on the despicable behaviour of Nadine Dorries

BMJ: Well enough to work? A report on ATOS by a GP.

Guardian: Frequent tweeting doesn’t make one a benefit cheat, Nadine Dorries

Lord Freud and Universal Credit – again

 

Lord Freud has written another piece about Universal Credit.  So I’ve written another response, and here it is.

 

Yes, Universal Credit should be simpler to work out withdrawal rates because there is just one withdrawal rate.  But then there are different disregard levels, so an individual may still struggle or need a computer to help them work it out – much like the benefits calculator that currently exists to allow a person to work out the effects of different situations.

Someone will still have to calculate the different components and how much a person or household is entitled to for each component, but that may be the DWP’s job.  And because tax-credits are removed, there is no need to apply to the HMRC.  So from the claimant’s view, applying is also simpler.

Online processing is supposed to give a more streamlined process.  I don’t know if this will be the case or not.  Certainly when I applied over the phone the form that was filled in for me was full of mistakes.  Filling in online meant no mistakes (or fewer mistakes) were made, because I had all the information I needed in front of me.  However I still needed support, partly because health-related benefits can be distressing to apply for.  For people competent with computers, I suspect using an online form is easier.  But for those who are not competent with computers; those who have other difficulties such as learning difficulties, dyslexia or illiteracy; those without computers or without internet; those with chaotic lifestyles or are living in hostels; for these and for others the emphasis on online submission will be detrimental.

I would have assumed that those who find online forms easier, such as because it avoids a trip to the Jobcentre, already submit online.  And those who find this too difficult will already go to the Jobcentre or use a telephone.  So why the need to change?  Should this not be about the customer’s best interest?

Furthermore, an application for Jobseeker’s necessitates repeated trips to the Jobcentre anyway.  So what’s wrong with one at the beginning of the application process?  If you have alternative plans for those who cannot manage online applications, why have them in the first place?

Comments about whether or not work is worthwhile, or more worthwhile, under Universal Credit deserve fuller attention so I shan’t address them here.

The line about ‘most people at work are paid monthly’ gets a little tiring.  The argument against is not about what most people get.  It is about what people at the bottom of the income ladder get; it is about what it is reasonable to expect of people who often already face numerous challenges that may include poor arithmetic skills; and it is about what is best for the people concerned.

If you have alternative plans for those who cannot manage on monthly pay-packets, why have them in the first place?

I’m confused by the ‘new’ conditions on working part-time and claiming benefit.  As far as I was aware, a person could only work up to 16 hours whilst retaining benefit; this was to encourage people to seek some work whilst continuing to have the requirement of looking for full-time work.  Anyone who had caring duties could claim Income Support to top-up part-time work.  I don’t know what ‘new’ conditions have been brought in, unless part-time work is to be discouraged.  Which would be unfortunate given the difficulty of finding full-time work in the current climate, and would keep people away from the labour market for longer.

Lord Freud seems to have hinted at a partial benefit for those who are ill.  Other countries have partial benefit schemes whereby those who are deemed too ill for full-time work but capable of part-time work are given partial benefits.  Some countries also top this up with an unemployment benefit if the person concerned cannot find part-time work.  But as far as I am aware, there has been no suggestion of this by the government.  I am therefore unsure what Lord Freud means when he says, “If someone can’t work full-time because of an illness or caring responsibilities or simply because a full-time job isn’t available, then we will not place additional expectations on them.”  People who cannot work full-time because of an illness do have expectations placed on them – it is called the Work-Related Activity Group.

I also imagine it could be very difficult to determine who is not working full-time “because a full-time job isn’t available,” as opposed to lack of trying.  This would also be a new policy I have not heard of before.

I can’t say whether “speculation” that the IT system will fail is true or not.  I can point out that such large schemes generally do have problems.  But concern about failure, when the concern is based on many past failures and difficulties, is not defeatist.  It is a pragmatic request that things are done properly the first time, taking the time necessary to do so.  It isn’t that “people believe we shouldn’t changes the system because it is hard.”  Rather, it is that given we are changing the system, we should do it properly.

Lord Freud correctly says that, assuming full take up under both the current system and the new one, Universal Credit will involve an extra £2 billion in spending.  Which leaves the unsettling question that if UC brings higher payments and pensioners are not being touched at all, where are the savings coming from?  In large part, the savings are coming from the fact that rises in benefits will no longer be inline with the Retail Price Index, and will instead rise with the Consumer Price Index.  This means that benefits will rise at a lower level, thus giving the savings.  This also counteracts the government’s anti-poverty measures.

This is Lord Freud’s article in the Guardian:

http://www.guardian.co.uk/commentisfree/2012/nov/01/universal-credit-debunking-myths

(Why We’re Not) Benefit Scroungers: Extract 2

The one thing I am absolutely unreservedly and implacably opposed to in all of this is a real world test.” – Chris Grayling, Minister of State, Department for Work and Pensions, 2011.

But the current, not-real-world test isn’t working.

It is not uncommon for a claimant to be signed off work by a GP, and yet be refused benefits.[1]  Nor is it unknown for an employer to consider an employee to be too ill to return to work, yet the employee is refused ESA.[2]  The DWP argue that this is because the ESA assessment considers the ability to carry out any job, not just the one the claimant was in before becoming ill.  However this still conflicts with the GP’s judgement, and the questions asked are so poor that it is often unclear what job the DWP has in mind when assessing a person as fit for work. …

When a system works well, appeals against decisions occur in marginal cases.  In terms of the WCA, the only people appealing should be those who received just under the required points.  After all, most people know whether or not they can walk 200m, dress themselves, prepare a meal, remember to take all their medicine etc.  They won’t appeal if they can appreciate that the decision was fair (n.b. fraud in DLA costs a mere 0.5% of DLA payments, less than the cost of official error.  Fraud in Incapacity Benefit is even lower at 0.3%.  ESA will not be assessed until 2013).  Yet up to February 2010, 60% of appeals overturned in favour of the claimant were for cases that had originally been awarded zero points.  A further 23% had been awarded between 3 and 6 points (there are no 1 or 2 point descriptors), leaving just 17% who had been awarded between 7 and 14 points.[3]  This is unacceptable.  A high percentage of claimants are failing to even come close to having a proper assessment of their health made. …

There is high variability between decision makers [who are non-medical staff at the Department of Work and Pensions].   Professor Harrington, the head of the independent reviews into the ESA assessment, said that “consistency and quality of decision making appear to be key issues.”  This is particularly the case now that Harrington’s previous recommendations have led to an increased importance of the decision maker’s role, relative to the ATOS assessment. …

Professor Paul Gregg, before the WCA was rolled out nationally, reported that, “the test so far has caused a huge amount of anguish to the people who have gone through it. We need to have something that is working accurately before we apply it nationally. We shouldn’t roll this out until we have something that is working.”[4]  Gregg was involved in the design of the new system (ESA and WCA)and  has been described as “one of the most rigorous and high-impact social policy academics in the UK.”[5]


[1] Dryburgh, Unfit for Purpose, 2010, Citizen’s Advice Scotland. http://www.cas.org.uk/publications/unfit-purpose

[2] Dryburgh and Lancashire,The Work Capability Assessment, 2010, Citizen’s Advice Scotland http://www.cas.org.uk/publications/work-capability-assessment

[3] HC Deb, 28 June 2011, c662W

[4] New disability test “is a complete mess,” says expert. 22nd Feb 2011, The Guardian. http://www.guardian.co.uk/politics/2011/feb/22/new-disability-test-is-a-complete-mess

[5]Baumberg, September 27th 2012, Paul Gregg: new ideas for disability, employment and welfare reform. Inequalities. http://inequalitiesblog.wordpress.com/2012/09/27/paul-gregg-disability-employment-speech/

(Why We’re Not) Benefit Scroungers: About

Yesterday I published a post with extracts from my book that is coming out in December.  Today I realised I had put very little information about my book on this blog, and I should probably let my readers know what my book is about.

It’s called “Why We’re Not Benefit Scroungers,” and has the subtitle “Living with disability and chronic illness in modern Britain.”

The first of its two parts is about the current welfare system and the changes the government is making.  This part is fact-based, relying on data and publications from bodies such as the Joseph Rowntree Foundation, Citizen’s Advice Bureau and Department for Work and Pensions.  One chapter deals with Employment and Support Allowance and the facts surrounding its unpopular assessment process.  Another looks at Disability Living Allowance, how assessment for this currently works and what is happening with the changes to Personal Independence Payments.  Other chapters discuss common media misrepresentations – and sometimes government misrepresentations – and some of the costs associated with disability and chronic illness.

The second part features stories about people with different disabilities and illnesses.  These are written as memoirs, giving the experiences of these people as they recall them.  For some, ill-health and disability has interrupted or hindered education.  For others, illness came later in life and has forced a withdrawal from work.  Some disabilities or illnesses can be worked around with understanding from the employer; others require the purchase of aids and adaptations.

All these stories show the obstacles that face the chronically sick and disabled in this country.  From inaccessible public transport to incomprehensible instructions, this society is not prepared for the needs of some of its most needy people.  These stories show some of the realities of living with disability or chronic illness in this country today.

I will be publishing some extracts from the book on my blog over the next week so that you can get more of an idea of what it is about.  I haven’t got a planned publication date yet, partly because I’ve lacked the health to get on with it, but I intend to have it out at the beginning of December.  If I can sort out how to work my website, I will be making the book available to pre-order.  Keep watching or follow me on Twitter (@AidaAleksia) to find out more.