Get Better... Or Else?

Disabled people have precious few illusions left about how the DWP views us, but a new pilot programme is going to take that relationship into even more disturbing territory. Starting in November, 3000 disabled people in the Work Related Activity Group of Employment and Support Allowance will be forced, under threat of sanction, to attend medical interviews "to address barriers to work", or as DWP minister Mark Hoban put it in the press release "to address health problems". This is at best ethically dubious, forcing someone into a medical process without their consent and which is not with their own specialists, nor even necessarily with someone competent with their specific disability. The only other example of a compelled medical relationship* is for people sectioned under the Mental Health Act, and even they are at least guaranteed that the medical staff involved are mental health professionals and/or their own doctors, while the DWP merely state the meetings will be with "doctors, occupational health nurses and therapists".

Many of us who have dealt with corporate Occupational Health professionals will have encountered the situation where the opinion of the OH professional is at odds with that of our own specialists - in my case the OH professional actively tried to undermine a report by my own consultant and I had to exhaust the company grievance procedure before my then employers would back down and accept the opinion of the consultant who was actually treating me. Yet someone facing workplace OH processes does at least have resort to grievance procedures and the threat of an Employment Tribunal, with the right to withhold consent for the referral, or to withhold consent for a report they disagree with to be forwarded to their managers. Not stated in the DWP press release is whether the medical staff used will be feeding reports back to DWP, what data protection will be in place around that, and whether the disabled person will have the same medical protection in respect of having the right to view and potentially deny consent for release of the report as is currently the case for a workplace OH assessment.

Worryingly, the DWP press release leaves unstated what will happen if the appointment results in the patient being told to undertake treatment they disagree with, or which is even at odds with the appropriate treatment for their disability, worries that are doubled by the current hair-triggered sanction regime which DWP targets at disabled people. Many disabled people have related experiences with Atos-conducted WCAs in which the Atos 'Health Care Professionals' have proven to be utterly clueless on the specifics of the disability they are meant to be assessing, assuming they have even heard of it in the first place, and similar staff are now to be charged with "address(ing) barriers to work". There are a host of disabilities in which standard treatments for apparently similar disabilities may be contra-indicated, yet actively advocated by medical staff who don't specialise in that specific disability. If a patient, many of whom are experts in their own disability, finds a DWP OH professional pushing them towards a treatment they know their own consultants would not advocate, then what potential is there for them to say 'no' without triggering sanctions? Equally worryingly, the confrontational nature of DWP's relationship with disabled people (and claimants in general) may mean that the patient is too intimidated by the potential threat of sanctions to even think of objecting, which effectively removes any potential for the medically required 'informed consent'.

Dragging this process into even murkier ethical waters, the project is one of three trials, the others being additional support from JCP and additional support from a Work Programme provider, which are being conducted in order to determine which is most effective at getting disabled people back into work. However, a trial involving a medical process is arguably, if not by definition, a clinical trial and subject to additional ethical requirements, including further levels of informed consent, shared decision making, right to privacy, and a right to withdraw, all aspects that are likely to be extremely problematical in the process DWP appear to be proposing. Potentially any medical staff conducting these trials without ensuring these rights are in place could risk facing charges of serious professional misconduct.

This process further embeds into benefits practise and regulation DWP's belief that any disability can be recovered from if the patient really wants to ('they get better', Esther McVey, Minister for Disabled People), a consequence of the ideological indoctrination of DWP with the patient-blaming version of the 'BioPsychoSocial Model of Disability' created by American insurer Unum Provident - they of the infamous 'disability denial mills'. The problem for disabled people is that this model fails utterly to reflect the reality of disability, where many people are too disabled to work, are not sufficiently disabled to qualify for the ESA Support Group, yet have stable disabilities with little likelihood of getting either better enough to move into the workplace, or deteriorating to the point they move into the Support Group. This leaves only the ESA WRAG open to them, but WRAG assumes a person will 'get better' and pressures them to do so, pressure that will now be further increased by this new experimental regime.

A further concern is where the DWP expects to find staff for this new pseudo-medical aspect of ESA. Atos have been struggling to cope with the numbers requiring Work Capability Assessments, to the point that they have had their monopoly withdrawn and been ordered to retrain all of their staff. New competitors for WCA work are going to be appointed next year and will each require their own customer-facing medical professionals, together with other medical professionals to deliver training. At the same time Atos and Capita are creating new organisations to deliver PIP assessments, all requiring their own medical staffs, and there is little reason to doubt that the PIP assessment regime will both insist on more people being assessed and on their being reassessed on a much more frequent basis, needing a large increase in the number of medical staff required to deliver PIP assessments in comparison to DLA. And now this ESA 'initiative' is going to require yet more medical staff.  Where are they going to come from? There is a fixed pool of occupational health and rehabilitation oriented medical staff such as physiotherapists and OTs and any of us who have dealt with them on an ongoing basis will probably have encountered long waiting lists and rehab programmes that really aren't as comprehensive as even the staff would like. Trying to draw more and more staff into DWP pseudo-medical programmes is either going to put the existing pool of trained staff under ever increasing pressure, or see DWP relying on staff without appropriate training, or with inappropriate attitudes.

However this plays out, disabled people have good reason to be worried.

*Even in a workplace Occupational Health referral the assessment can only be done with the consent of the employee, and they must then consent to the release of the report to their employer. Based on my own experience I would advise that consent should only ever be given after viewing the report, a legal right, as even an apparently supportive assessment may turn out to be followed by an openly critical report.

Atos Slated by DWP...

... but is that good for us, or bad?

As the whole country, and media, descended into Royal Baby frenzy, the Department of Work and Pensions chose their moment to slip out the news that Atos had failed, catastrophically, an audit on the Work Capability Assessment, and that DWP would be removing their WCA monopoly in order to bring in competitors from next year.

The DWP press release states that in an audit of 400 WCA reports, from WCAs conducted between October 2012 and March 2013, itself sparked by failure in a smaller audit, 41% were graded at C, or unacceptable. The press release reports that reasons for an unacceptable grade could be a decision which explained in sufficient detail, and is at pains to emphasise that a failing grade doesn't mean the assessment is wrong. Well they would say that, wouldn't they.

As a consequence of the failure, Atos are required to bring in a Performance Improvement Plan, with every Atos 'Health Care Professional' required to undergo retraining,  and to pass a re-evaluation, with those failing the evaluation subjected to auditing of their reports until they do, or until they have their authority to conduct WCAs withdrawn.

Now on the face of it this is good news, the rate of successful appeals against Atos WCA decisions* has been clearly unacceptable for three years now, and clearly change was needed, but the devil may be in the details.

The Atos computer system is well known for being incapable of catching the nuance of how disability restricts our lives, and this is a point where an HCP who actually cares about doing the job in an equitable fashion could use his experience to override the straitjacket of the WCA rules in order to give an assessment that is morally and medically right, rather than strictly in accordance with procedures. In other words, they could, novel idea though it may be, base a decision on the medical evidence. But this would likely be more difficult to express in the approved fashion on the written report. So simply demanding that someone meets the WCA standards does not necessarily mean the situation will improve.

Equally, and as many of the leading campaigners on the WCA have repeatedly emphasised, Atos are only a part of the problem. Atos could have lost the entire WCA contract and the WCA would still have been fundamentally broken, because its descriptors fail to reflect the reality of either disability, or work, and these aspects are not being changed, while the changes may make it more difficult for HCPs to work around the descriptors to reflect the best interests of their patient. Bringing in a new company to challenge the Atos monopoly cannot make any difference if the procedures remain the same, and if they are drawing their own HCP staff from largely the same pool of personnel, many demonstrated time and again to be personally hostile towards disabled people.

Anything that emphasises the failure of Atos has points in its favour, but the unfortunate reality is that the audit failure, and the changes that result, are at least as likely to make things worse for us as they are to make them better.




*DWP continue to maintain that Atos do not make the ultimate decision on a WCA, but the Harrington reports demonstrated that the overwhelming majority of Atos decisions are passed on the nod, so Atos don't make the decisions in precisely the same way that they don't enforce targets for number of people failed.

Disability, The New Axis of Evil

The House of Commons debated an Opposition Day motion today calling for disability benefit cuts to be subjected to a cumulative impact assessment – the radical idea that if you subject someone to not one cut, but two, three or even six or more (DLA, ESA, ILF, Bedroom Tax, Benefits Cap, council care budget cuts, and the list goes on, and on, and on) you should actually add up everything they’re losing.

The standout contribution has to have been from (disabled) Tory MP Paul Maynard (Blackpool North and Cleveleys).

“dragged to this Chamber by Pat’s petition, We are Spartacus and other extremist disability groups that do not speak for the overall majority.”

Pat’s Petition, extremists? Spartacus, extremists? Damn, better hope the accessibility at Guantanamo Bay’s up to scratch for when they line all us uppity crips up for Extraordinary Rendition.

“The cumulative impact assessment is a very narrow tool by which to judge the contribution of the disabled community in this country, their potential and what they can achieve. I think that it borders on the offensive”

Actually I think we wanted to judge the Tory’s contribution to the disabled community, or more accurately what they’re taking away from our potential and what we can achieve - sort of an anti-contribution, but I can understand Paul Maynard misunderstanding it in his horror that we uppity crips have been refusing to properly tug our forelocks and say ‘Thank You, Master’ to that nice Mister Duncan Smith. He is right on one thing, there is definitely something offensive to disabled people at work here.

“We as a Government are seeking to edge towards greater recognition of the social model of disability, and that means not paying attention to the labels that too many want to hang around the necks of disabled people.”

That would be labels like ‘poverty stricken’ or ‘desperate’ then? As opposed to the ones favoured by IDS and his coterie at DWP, labels like ‘fraud’ and ‘shirker’.

“we help them to do that in my constituency surgeries. I hope that Labour Members do so, too, rather than store up a treasure trove of Atos scare stories”

So my Atos WCA didn’t really include the doctor fighting desperately to avoid having to record the piece of evidence that qualified me in its own right? Glad to have that cleared up, clearly as a poor, silly, extremist crip I must have misinterpreted what was happening to me.

“Page 34 states clearly: ‘Young people’s aspirations can decline in response to their growing understanding of the world’. Listening to Opposition Members, I am sure that young people’s aspirations will decline because of the negative messages they are getting.”

It seems Mr Maynard would prefer disabled people to behave as proper mindless sheep with no knowledge of, or concern for, the way the world regards us, sort of a messier, wobblier, dribblier version of H G Well’s Eloi from The Time Machine. God forbid that some dangerously radical extremists (like the Office of Disability Issues) should want to tell them they might face having only 53% the likelihood of non-disabled people of finding a full-time job, a 58% higher chance of unfair treatment if they do find a job, or anything up to a 39% higher chance of being a victim of crime.

“We are told that an increase in the reporting of hate crime is evidence of the Government’s war on the disabled. I find that disgusting. It is personally abhorrent that people should campaign in a partisan way on the backs of those in the most vulnerable section of our society”

Clearly I must have misheard the three complete strangers who screamed at me in the street. I could have sworn they yelled: “This is the DWP, we know you’re faking, we know where you live”. Silly me for thinking that someone must have taught them to see disabled people as 'skivers' and 'scroungers'.

What motion did the House finally vote in favour of? This:

This House welcomes the Government’s leadership in furthering the rights of disabled people; recognises the UK as a world leader in disability rights; notes that approximately £50 billion a year is spent on services for disabled people, including adult social services and including an investment of £3.8 billion in health and social care services in England to deliver more joined-up services to disabled people; further notes the £350 million allocated by the Government for programmes and support for disabled people to move into and stay in work; and acknowledges the Government’s collective determination to build upon the London 2012 Paralympic Games, and create a legacy which shines a light on the abilities and achievements of disabled people.

You really couldn’t make it up.

Update 17 July:

It seems Mr Maynard has realised he may have been a little extreme himself, as shown in this exchange of emails with the people behind Pat's Petition. On the other hand, I am still struggling to understand how any reasonable person could disagree so vehemently with a petition by disabled people and carers that simply asks for a cumulative impact assessment on disabled people hit by six or more separate cuts. If and when Mr Maynard does meet with Pat's Petition I hope they press him to explain exactly how that is unreasonable. Understanding the breakdowns in communication between two groups is after all vital if they are to be brought together, and there seem to be some gaping chasms in understanding between disabled people and carers, and the professional politicians of the Conservative Party.

PIP Consultation Update

The ‘Consultation on the PIP assessment Moving around activity’ (to give it its DWP title) is ongoing, with responses due by 5^th August 2013. What this consultation gives disabled people is the chance to tell DWP that the restriction of PIP’s Higher Mobility Component to only disabled people able to walk less than 20 metres does not adequately reflect the mobility restrictions we face in living our lives, in working, and in interacting with the wider community. The consultation itself can be downloaded here (other formats, including large print and easy read, are available, see the consultation page).

Since the release of the detailed consultation document there have been various responses from disability groups and this piece attempts to gather in one place links to all of those that go further than simply reporting its existence. If you are aware of responses not covered here, please post a link or other indication as to where they can be found in the comments section.

We Are Spartacus have a page covering the consultation, with a detailed briefing  (.pdf) on the background to the consultation and why it is important to disabled people with mobility impairments. Spartacus also have a survey to gather data from people affected to feed into their own response, which will be available until Monday 15^th July. They also request that individual responses to the consultation are copied to them at pip20m@janeyoung.me.uk (this is important because of past misrepresentation of disability consultation responses by DWP). 

Disability Rights UK have a brief discussion of the consultation which also asks for people affected to contact them. They also have a report on a relevant exchange between Lord Alton and DWP minister Lord Freud in the House of Lords in which Lord Freud stated that the government ‘has an open mind’, but that their ‘preferred option is not make any amendment to the current criteria’. Obviously this must reflect a slightly different definition of ‘an open mind’ than most people use.

Benefits and Work report on the consultation here, noting that ‘they (DWP) are preparing for the possibility of arguing that in spite of the overwhelming rejection of the new criteria, keeping the current 50 metre limit is not ‘affordable and sustainable’.’

A story at the Disability News Service reports ‘‘Worrying’consultation document brings new PIP concerns’.

Leonard Cheshire Disability have a survey which they would like those affected to complete.

The consultation is also reported by, amongst others, Action for ME, Ekklesia,  Contact a Family, the Papworth Trust, and Disability Wales. Several of these are looking for people to contact them to provide input to their responses.