Saturday, 29 August 2015

Don't look there, look here!

The Thick of It was set in a fictional government department: Department of Social Affairs and Citizenship, or DoSAC. But when I think about our real government, there's no other department I can imagine that would be quite as sitcom-worthy as the DWP.

There are certainly some very clever people in the department. Yesterday's death data was confusing to all who read it. Even very clever professional number crunchers couldn't really get to the bottom of it because the data was so badly presented. This was almost certainly deliberate: The DWP didn't answer what was asked of them, and dumped a load of data that would confuse people who tried to use the data to answer the simple question "how many people are dying after being found fit for work?"

Anyone can release some data while withholding the answer to a question, but the press and public will generally look at the data and find the answer for themselves. To release a bunch of data that's on-topic, but still means that very clever people can't get the answers they're looking for takes Bond-villain levels of evil genius. You have to wonder why someone who can so cleverly pretend to be transparent by releasing opaque data is working in a public sector job, and not using their evil genius skills to make themselves a billionaire.

But then there's the spokespeople who are so bad at sleight of hand that they remind you of a 4 year old trying to do a magic trick by saying "now, if you'll just look out of the window for a moment while I sort this.... OK, you can look back now."

The DWP spokesperson told the BBC for an article:

"The mortality rate for people who have died while claiming an out-of-work benefit has fallen over a 10-year period. This is in line with the mortality rate for the general working-age population.

"The government continues to support millions of people on benefits with an £80bn working-age welfare safety net in place."

None of the three sentences have anything to do with the question asked.

It was either a pathetic attempt at a misdirect ("never mind the terminally ill people we found fit for work. Look! Less people are dying whilst claiming benefits!") or they genuinely didn't understand the question and are akin to a GCSE English student rambling about Charlie and the Chocolate Factory when the exam question asked them about Romeo and Juliet.

You can just imagine a Malcolm Tucker type figure in the DWP yesterday, can't you? "We're fucking fucked. The fucking Information Commissioner's Office have fucking ordered us to release this fucking data. I'll tell you what; we'll make it as confusing as fuck and then we'll distract the fucking press with the press release. What parts of the data look good? Less scroungers are dying than a decade ago? Well fucking put that in the fucking press release. It doesn't fucking matter that it's got fuck all to do with the sick cunts dropping dead after we've stopped their benefits. And throw in a fucking brag about how many billions we waste on the scroungers at the end of it."

Either that or their spokesperson is as lacking in smarts as Terri Coverley which is why they were recruited because they would just innocently talk about something completely off topic because they understood the data even less than the press and public.

Poverty Porn is all the rage right now. Not just Benefits Street on C4. Just this week on five they had a "benefits night" with such classy shows as Big Benefits Wedding and 12 years old and on Benefits. Pointing and laughing at poor people is the hot TV trend. But I wanna see inside the DWP. I want to see inside the department that comes out with such ridiculously off-topic press statements. I want to gawp with wonder at the thinking behind sending a spokesperson out to insult the public's intelligence by hoping we won't notice that what they've said is unrelated to the subject at hand. In The Thick of It DoSAC tried to obfuscate around their role in the death of the fictional Phil Tickell. Unfortunately the DWP are trying to downplay their role in potentially thousands of real human beings dying penniless. If it wasn't such a tragic situation, I could very much enjoy an evening watching a fly-on-the-wall show set in the DWP press office as they scramble to say to the press "don't look at that, look at this!"

Friday, 28 August 2015

Fit For Death

The government have finally released the figures relating to the thousands of people who've died after being found 'fit for work'. This, of course, is in the same week that Iain Duncan Smith said that he wants to kick even more disabled people off ESA. (Not enough people dying penniless?)

As for very ill people being found fit for work, I couldn't help but notice that the government were kind-of telling the story through their (now withdrawn) case study leaflets.

Welfare Weekly unearthed the tale of a fictional ESA claimant called Zac.

On the left side is an image of a young-ish Asian man. Across the top in pink text it says 'Zac’s story. I kept in contact when I couldn’t get to a meeting' Beneath that in black it says 'I let my work coach know in advance that I couldn’t go to our meeting because I had a hospital appointment. I had a good reason for not going to the meeting and proof of the appointment. My benefit payment hasn’t changed and we booked another meeting I could get to.

Photo credit: DWP via Welfare Weekly

We get it. He's on ESA and he's ill enough to require hospital care.

Later in the week The Guardian found the same stock photo man in a different leaflet; this one promoting JSA sanctions.

This photo contains 2 case studies. At the top is a photo of a young white man with a speech bubble in which he says 'I let my work coach know well in advance that I couldn’t go to our meeting because I had a hospital appointment. Because I gave good reason I still received my benefit payment and my work coach can use that time to help other people. We’ve arranged another appointment at a time I can attend.' Then below him is the same stock photo of Zac. His speech bubble says 'I didn’t take part in the Mandatory Work Activity scheme. Then my work coach found me a job that suited my skills but I didn’t apply for it, so my JSA has been stopped for six months. If I don’t apply for jobs my work coach asks me to apply for I could end up losing my benefit for three years.

Photo credit: DWP via Guardian

So I guess the story the DWP is trying to tell is that Zac originally claimed ESA, but then he was found fit for work and turfed onto JSA? Presumably his illness was why he didn't participate in Mandatory Work Activity or apply for a job.

Given the extremely high number of people who've died after being found fit for work - and the fact that the DWP like to make case study leaflets for "illustrative purposes only" - I'm guessing that somewhere in the DWP office there's another leaflet featuring Zac to explain what happens to ill people when they're found fit for work. And I'm assuming it looks a lot like this:

On the left side is the same photo of Zac. Across the top in pink text it says 'Zac’s story. I tried job hunting, but it's really hard when you're terminally ill.' Beneath that in black it says 'After I was found fit for work my ESA was stopped. I was put on JobSeekers' Allowance but I didn't take part in Mandatory Work Activity or apply for a job my work coach told me to, because I was too ill to do either of those things. My JSA was stopped for six months. I was too ill to get to the food bank, and with no food and no money, my health got worse rapidly. I died of my illness 4 weeks after my sanction. My doctor thought I had 6 months left.

Photo credit: Template and Zac's photo by DWP, text by me

Of course; they don't need the fictional Zac to tell the story of what happens when they could hand out leaflets telling the real story of people who died fit for work. Like Moira Drury or Linda Wootton.

Wednesday, 19 August 2015

Purposefully Illustrating What? #fakeDWPstories

Yesterday every major news outlet picked up Welfare Weekly's scoop that the DWP made up "case studies" about people that were happy with the sanctions system.

But one aspect that most outlets didn't report on, was that the leaflet in question - which Welfare Weekly had archived - specifically pertained to ESA sanctions. This leaflet was solely about selling the perks of sanctioning people who are too ill to work.

All sanctioning is cruel and should be stopped. But there is something especially sinister about sanctioning people who are too ill to work for not trying hard enough to get a job that they're not well enough to do anyway.

For those not in the know; Employment and Support Allowance is split into two groups: The Support Group for people who are not expected to ever be well enough to return to work, and the Work Related Activity Group (WRAG) for people who are unable to work right now, but might be well enough to work at some point in the future.

So the WRAG is comprised of people with cancer who are expected to make a full recovery eventually, but for now they're undergoing treatment. There'll be people who've had life-changing accidents who are still in rehabilitation. People who are waiting for surgery, such as a hip replacement, before they can return to work.

It's not surprising they couldn't get any genuine quotes, is it? "I was so busy going to radiotherapy every day that I didn't have time to write a CV. Getting sanctioned for a week made me realise the importance of having my CV up-to-date whereas before I'd been solely focussed on kicking cancer."

Or "My brain injury from my car accident has made me forgetful and I forgot I was supposed to be going to the JobCentre. Sanctioning saved me from worrying about whether I'd remember to go shopping because I didn't have any money to buy food anyway."

Given that the press found such a massive story about ESA and sanctions, it's a shame they didn't devote a paragraph in each article about how evil it is to be sanctioning people who are too ill to work. The DWP claimed the made up case studies were for “for illustrative purposes only”. It would have been nice to use the story to purposefully illustrate the barbaric treatment of WRAG claimants, while most journos just conflated WW's story with JobSeekers' Allowance.

Friday, 1 May 2015

"A life on benefits is frankly no life at all" - Why David Cameron is wrong

"Starting a life on benefits is, frankly, no life at all."
- David Cameron, BBC Question Time 30/04/2015

In that one sentence last night David Cameron dismissed my life as nothing. My family were poor. We received benefits when my dad worked, and we received benefits after work made him disabled. I went to university in spite of this background, and received a student grant. While I was studying I became sick with what I would later find out was a mitochondrial disease. I still worked when I could, albeit intermittently and claiming incapacity benefit at times. Later I started a computer repair business but became too sick to work after a year of that. Now I live on benefits - I am in the Support Group on ESA, which is for people that even Atos and the DWP admit are unlikely to be able to work in the foreseeable future. I also receive DLA, Housing Benefit and various others.

What none of this has done is make my life worthless. I do not have "no life at all." I am a person, with experiences, who has contributed to society just by being myself. I enjoy things, I create things, I learn things, I say things. I talk to friends and make new friends. And all of this despite starting my life on benefits and continuing it now on benefits. All of this despite the fact that I may never be able to undertake paid employment again.

David Cameron, though, disagrees. Asked to stop talking about the economic reasons for his policies and talk about the moral issues, he said:

"helping people into work is the most moral thing"
- David Cameron, BBC Question Time 30/04/2015

Except it's not, though, is it. Helping people to find paid employment is not the most moral thing, even if that was what the Tories had been doing rather than yanking away support and telling people to sort themselves out. What is actually the most moral thing is making sure that all people have food and shelter, and the ability to live a life that they find value in. Paid employment is only one path to that. Paid employment (or attempting to start your own business, for that matter) is an option that is for many not available - whether that is from lack of available jobs, lack of training, sickness and disability, caring responsibilities, or some other reason.

We as a society are able to provide for everyone. Less labour is required to feed and clothe us with every new day. We do have jobs that need doing, such as in care and healthcare, but private employers aren't going to pay for those. If we want more people to be employed then others are going to have to work less. But employers want to extract maximum profit from the minimum amount of pay so that isn't going to happen any time soon.

One thing is certain: People like David Cameron and Iain Duncan Smith have no idea what the lives of people on benefits are like but they judge us anyway. They decide we have miserable meaningless lives but then make everything so much worse by snatching away support and telling us to get jobs that aren't there or that we are unable to do.

First posted on A Latent Existence

Manifestly Abusive

(It's Blogging Against Disablism Day 2015, #BADD2015, so I thought I would look at what's going on during the UK General Election)

It's General Election Season in the UK, which means all the parties have to put out actual policies of their own, rather than just shout about how terrible the other parties' supposed policies are. Unfortunately in at least two cases, arguably three, we're seeing disablism forming either part of the manifesto, or a prominent part of campaigning. And of course it's the usual suspects, UKIP and the Tories, with the Lib-Dems tagging along behind.

UKIP's manifesto is actually slightly less scary than last time, when they talked about putting learning disabled people into 'congregate communities' (that may well have been code for camps of a rather different kind - when they later sacked a candidate for openly calling for disabled babies to be killed, there were scores of UKIPers protesting he had done nothing wrong). What we get this time is a bunch of crowd pleasing policies that are worded loosely enough they could go either way - so GPs will replace the hated Work Capability Assessment in judging if people should be entitled to disability benefits, but will also be required to issue 'Fit Notes' to the DWP to say that people are now fit to work. They say they support the UN Convention on Rights of Persons with Disabilities (or at least Article 19 of it), but simultaneously want us out of the European Court system that enforces it, and so on. Other Welfare policies are more openly disturbing, promising a lower cap on benefits, Child Benefit only for the first two children, and 'cracking down on benefit fraud' (that would be the benefit fraud that's already smaller than DWP's internal error rate, and a fraction of the size of the tax evasion at the other end of the wealth scale).

But then party leader Nigel Farage opens his mouth and the bile just flows out. During the first televised leaders' debate he alleged there was a substantial issue with non-Britons coming to the UK to obtain treatment for HIV. He's said it before, last October for one, and it's a very clever, very calculated statement designed to appeal to the worst kind of human instincts. 'Health tourism' is a 'threat' UKIP have been pushing, even though actual evidence shows it isn't a major issue, but it lets them play the 'darn furriners coming here and stealing our hospitals' card (doubly valuable as UKIP's leadership is known to be ideologically opposed to the NHS, whereas the public love it). Specifically focussing in on HIV lets UKIP do two things: associate 'health tourism' with homosexuality in order to appeal to the homophobic elements in their core vote (they announced this week they would bring forward a bill to allow 'Christians' to discriminate against gays), and associate 'health tourism' with a disease still primarily associated with sexual transmission and therefore almost universally regarded in society as somehow 'dirty'. That they're doing this by stigmatising people with a serious and life-threatening illness clearly matters not one jot to them. It really is a quite spectacularly amoral piece of political calculation. And in last night's Question Time  he said it again, this time alleging foreign HIV patients mean UK HIV patients are not being cared for.

At least the Tories aren't focussing on HIV, but they're completely up for a piece of fat-shaming as public policy, and with a truly chilling sting in the tail. Page 28 of their Manifesto states: “We will review how best to support those suffering from long term yet treatable conditions, such as drug or alcohol addiction or obesity, back into work. People who might benefit from treatment should get the medical help they need so they can return to work. if they refuse a recommended treatment, we will review whether their benefits should be reduced.” Health blogger Dr. Margaret McCartney pointed out how carefully chosen their targets are. Not, for example, people who don't take their blood pressure medication, or who don't exercise regularly, but drug addicts, alcoholics, and fat people, all of whom already face considerable stigma. Now this isn't the first time the Tories have done this, snide attacks on people with addictions or obesity issues started cropping up fairly early in their government, from Cameron on down, but this is the first time it has become official party policy. And there seems to be a deliberate decision to link obesity and addictive behaviours in order to further worsen the social acceptability of obesity. Worse, they then decided to compound all that with the threat of compelled treatment. Compelled treatment is an absolute medical no-no, doctors are ethically mandated to provide their patients with the information allowing them to give informed consent to their treatment, but, as soon as you introduce compulsion, consent goes out the window.

To further compound the potential harm, the compulsion will be implemented by the notoriously disablist Department of Work and Pensions, the puppet masters behind Atos and now Maximus and the WCA, with their secret targets and league tables for sanctions against disabled benefit claimants. When you acknowledge (which much of society unfortunately does not) that much obesity is a secondary consequence of clearly identifiable medical causes, for instance drug side effects, mobility restrictions, metabolic disorders and so on, while drug abuse, alcoholism and other cases of obesity spring from complex familial, social and medical backgrounds, it becomes clear that this policy is deliberately designed to target disabled people in a way that makes non-disabled people positively happy to see it happening. And once this aspect of compulsion in treatment is established, who is to say where it will stop.

In fact the next phase may already be underway, and it comes not from the Tories but from the theoretically cuddlier Lib-Dems. Lib-Dem leader Nick Clegg has himself been heading a pilot programme to introduce mental health treatment on-site at Job Centre Plus (the high-street arm of the DWP). It would be hard to think of a worse combination for medical abuse. JCP are already cutting their numbers of specialist Disability Employment Advisors, from a starting point of having far fewer advisors per disabled job seeker than non-disabled, and have been implementing a massive increase in utterly inappropriate sanctions against disabled people, such as the learning disabled man sanctioned for being four minutes late for an interview, never mind that he was unable to tell the time. (When this incident was raised in a Westminster debate, a Tory MP claimed it was evidence of failing schools, apparently having no understanding whatsoever of what a learning disability is). Compound that disablist bias at JCP with the massive stigma around Mental Health issues and you have a real potential for inappropriate compulsion and people with MH issues being driven out of the Benefit system (which may of course be absolutely fine with many of the backers of this initiative).

Moving down into constituency level disablism, a group of London-based Tories decided it would be funny to compare Labour Leader Ed Miliband to a stroke victim on Facebook , by drawing on an existing piece of stroke awareness public service broadcasting, but associating it with images of Miliband deliberately picked to make him look as grotesque as possible while mocking the way he speaks. The pages disappeared as soon as people caught onto them, but the unpleasant stench of disablism lingers. Clearly these Tories thought that having a disability makes you somehow less, while marking you as unfit to partake in government, and isn't that a revealing insight into the way they think about us.

Equally revealing was the suggestion from Chamali Fernando, the Conservative candidate in Cambridge, at a hustings event, that people who are neurodiverse or have mental health issues could wear wristbands to identify them to police and other 'professional persons' (she's a lawyer, so presumably meant 'people like me'). That people who are neurodiverse or have MH issues already face even worse stigma than other forms of disability, and that she was proposing marking them out for the abusers in society apparently passed her completely by, as did the historical context of another political party having once implemented a policy of physically marking disabled people, and emulating the policies of the Nazi Party generally being considered politically a bad idea. There seems to be an acceptance that she was being utterly naive rather than malicious, but when sitting Lib-Dem MP Julian Huppert, alongside her at the event, criticised her for what she said, she sued him for defamation, which doesn't really suggest she's actually learnt anything from the incident.

And just to cap everything, David Cameron suggested last night during Question Time that a life on benefits is frankly no kind of life at all, which, given he had a profoundly disabled child who would have faced precisely that if he had survived, seems a remarkably inappropriate attitude.

So there we have the ways disability is being portrayed by three of the major parties in the election: by UKIP as somehow 'dirty' and 'gay' and 'stealing our NHS'; by the Tories as a form of benefit scrounging by drug addicts and their associates, who need the stern hand of government to set them on track, as a negative that would make someone unfit to act in government, as needing to be labelled for our own protection and as 'no kind of life'; and by the Lib-Dems as needing to be pushed towards work by intervention in possibly the most threatening environment imaginable. In the end it all comes down to providing yet one more way for the intolerant parts of society to punish people for being in need.  It's a sad state of affairs when bullying people in need is applauded as the socially responsible thing to do, and considered fit to grace the manifestos of not one, but three of our major political parties.

Saturday, 28 March 2015

Election 2015 - Quick, Get the Crips Out of the Attic...

In a perfect example of disabled people being thought of as solely useful as a PR gimmick, Esther 'they get better' McVey's electoral leaflet features a prominent picture of her alongside several of the disabled people from the charity People First England (which promotes the voice of people with learning disabilities) who campaigned for our voices to be heard at the Tory party conference.

Which is nice, as we were never first in her thoughts when she was Minister For Disabled People. Of course it would have been nicer still if she had checked they were okay with that, or if they even supported the Tories. Kaliya Franklin (@BendyGirl) of People First England (on the scooter next to McVey in the picture), noted "We expected the photo to be on a website, or even used by DWP. But not in party campaign material" and speaking through their twitter account (@People1stEng) People First England stated "It's positive to see voters with learning disabilities on the front of the former disability minister's campaign material. We want to encourage everyone to use their right to vote. So we look forward to a version of this leaflet in Easy Read. Campaign information should be accessible to all, especially when it features voters with learning disabilities. We'd like to make it clear that we are a non partisan organisation. We do not support any party or candidate"

So given McVey was so quick to take advantage of intellectually disabled people, will she be equally quick to take up their challenge to produce a version of the leaflet in Easy Read? (Not that DWP have ever been quick off the mark to produce any of their disability related documents and forms in accessible formats). And next time she wants to use disabled people as a PR gimmick will she pay us the courtesy of assuming we're adult enough to need asking for permission, not little children with a voice that doesn't count?

 (And it occurs to me that given the Tory gagging of charities under the pre-text of  limiting lobbying, it would probably have been illegal for People First England to campaign in such a party-political fashion, but McVey is perfectly okay with using them to do it for her without their permission).

Friday, 27 March 2015

Tory Cuts: As Bad as we Feared

 When the Chancellor, George Osbourne, refused to detail in the budget what observers estimated as £12Bn of cuts required for his plans for the next parliament to work, we all knew the likelihood was the Tories were going to trash disability benefits again. Those cuts have now leaked, and they are everything we feared.

The proposed cuts (with 'savings' per annum where known) are:

Industrial Injuries Compensation Scheme: companies to be made to pay instead. Of course this then puts the onus on the injured party to sue their employer when they refuse to pay out. They're supposed to use an insurer, but consider the history of Unum Provident and their 'disability denial mills'. £1Bn

Carer's Allowance to be restricted to people eligible for Universal Credit. 40% of carers to lose eligibility at a stroke. £1Bn

Contributory Employment Support Allowance (ESA) and Contributory Job Seeker's Allowance (JSA) to be means-tested, meaning 300,000 families losing £80 a week (and then you get to a year and lose everything through time-limiting). £1.3Bn (Edited to add:) The Institute for Fiscal Studies have pointed out this effectively means the abolition of cESA and cJSA, all unemployment claims will be treated on basis of the means-tested basis of Income-Based ESA or JSA, meaning your National Insurance contributions mean nothing.

Disability Living Allowance, Personal Independence Payments and Attendance Allowance to be taxed. £1.5Bn

Council Tax Support merged into Universal Credit.

Child Benefit only for first two children. £1Bn

Regional Benefit Caps to be introduced. Cameron already wants to cut the maximum benefits payable from £26,000 to £23,000, under this proposal only those in London would get that amount, the rest of the country would get less. (And to be fair to the Tories, Labour's Ed Balls is in favour of this one, though many Labour MPs aren't).

The comments in the BBC article are worth noting.

IDS's spokesman: "Officials spend a lot of time generating proposals - many not commissioned by politicians. It's wrong and misleading to suggest that any of this is part of our plan."

BBC: "The leaked documents were prepared by civil servants and commissioned by Conservative Party officials."

I think that's BBC-speak for 'Liar, liar, pants on fire!'

Friday, 6 February 2015

So It Turns Out We Can’t Trust Labour on the ILF

For almost a fortnight chaos and confusion has reigned over Labour’s position on the ILF. There has been persistent pressure on the party to make a clear statement of support for the ILF and to clarify that they will retain it if they take power after the election, and people initially thought that Ed Miliband had finally clarified that Labour does indeed support ILF and will retain it when he spoke at an event in Staffordshire on Monday 26th January. Labour candidates tweeted that the ILF was safe with Labour, and I actually had a senior local Labour figure on my doorstep telling me precisely that a couple of days ago when I said my support for the party was dependent on them supporting ILF.

Sadly I had to tell him that this wasn’t the case, that the Disability News Service and others had been chasing party central for a clarification, and were instead meeting evasion - Miliband causes chaos with answer on ILF closure. We finally got an answer yesterday, when an email from Kate Green (Labour’s Shadow Minister for Disabled People) emerged in which she tells a constituent that it ‘is not Labour’s position to retain the ILF’. Labour finally admits: ‘We won’t save the Independent Living Fund’ That Labour were evading committing themselves to media sources, but admitted the truth behind their policy in an email to a constituent, looks like incompetence at best, and the evasion inevitably raises suspicions that they have things to hide.

The email does say there is a “real opportunity, and indeed a pressing need, to develop a sustainable model of provision for the most severely disabled people within the integrated health and social care landscape that [Labour shadow ministers] Andy Burnham and Liz Kendall have been articulating, rather than continuing with a standalone fund”, which is all well and good, but that is a solution that will take at best months and more likely years to have in place, and the ILF is due to be wound up in June, a month after the election. Nor does 'sustainable' augur well for the budget, it's often code for cuts to come. Even if we can trust Labour’s intentions, which frankly is yet to be demonstrated (and evasion by major party figures certainly doesn’t give anyone the warm fuzzies that trust is warranted) the timescale means that Labour needs to commit itself to supporting the ILF until a replacement in place, and make that commitment now. Arguably what Green talks about is no different to the winding up of ILF underway with the Tories, which transfers the funding to local authorities – integrating it with other council social care functions - but does not ringfence the funding, meaning disability care will inevitably be asset-stripped for more politically popular projects, and until she, or her boss Rachel Reeves, Shadow Work and Pensions Minister, or her boss, Ed himself, clarify the situation, we have to presume that ILF will be closed down under Labour in precisely the way the Tories have currently planned, leaving the most disabled of all disabled people with significantly reduced levels of care for a period of years.

DPAC are calling for people to email their MPs and to support a petition to Ed Miliband and Ed Balls calling on Labour to protect the ILF.

So we’re left with the bizarre situation where Labour oppose the Tories closing the ILF because they want to close it themselves. With such a mind-boggling position, is it any surprise that they have shied away from a formal policy announcement? And if we can’t trust Labour to be frank on so basic an issue as to whether or not they support ILF, how can we trust them on any other area of disability policy?

Thursday, 5 February 2015

Does Universal Credit herald the end of Medical Privacy?

It would seem difficult for IDS's Universal Credit to become any more farcical, but under the DWP's latest change to the rules, your medical records are open to all. Well, not quite all, but a quietly introduced amendment snappily titled as the Social Security (Information-sharing in relation to Welfare Services etc.) (Amendment) Regulations 2015 means that from 13th February IDS will be allowed to share the medical information of any Universal Credit claimant with any or all of: Local Authorities, charities working with DWP, the Citizen's Advice Bureau, Credit Unions and Social Landlords*, and do it without asking your permission.

The Social Security (Information-sharing in relation to Welfare Services etc.) Regulations 2012 being amended state:

7.5 Being able to share person’s data without needing to seek their consent every
time will help to speed up decision making, make the process of applying for a local
benefit or service much simpler for the individual, and ease the administrative
arrangements by removing the need to collect and record consent.

While their Privacy Impact Assessment notes:

2.5 The effect of these legal changes means that in relation to the purposes described, it will no longer be necessary to first obtain the consent of the person whose data is being shared.

(We should probably have been concerned when the original regulations went through, but it has taken the Amendment to draw them to people's attention. The sheer scope of Universal Credit means that the number of people potentially falling within the scope of the Regulations has just massively increased).

The Assessment also notes:
4.17 For the purposes set out in the 2012 regulations, we expect the total volume of data being shared to be significant.

And the figures given across a variety of areas imply that even before incorporating Universal Credit claimants the provisions for data sharing without prior permission were likely to affect at least one, and possibly several, million people per year.

For more on this, see the Guardian's article: A governmentagenda to dehumanise benefit claimants and Stephen Sumpter (@LatentExistence)'s piece Need benefits? Say goodbye to privacy, but while the immediate concerns are bad enough I want to look at what this could mean in practise and, particularly, the potential longer term impacts.

* For clarity, 'social landlord' excludes private and for-profit landlords, but includes practically everyone else in the housing market, whether housing associations, not-for-profit organisations, charities or whoever.

In Practise

For the moment the fiasco that is Universal Credit means there should only be limited impact for disabled people, as we have all allegedly been declared too complex for the system to cope with, but IDS appears to be making every effort to make it impossible for the next government, whoever they are, to back away from fully implementing Universal Credit, and the longer term aims are that Universal Credit will eventually spread its tentacles to enmesh: child tax credit; housing benefit; income-related ESA; income-based JSA; income support; parts of the social fund; and working tax credit - in other words practically every working-age adult in the country, including those in work, is going to end up with a Universal Credit claim of one type or another (DLA and PIP are currently excluded - but how long will that remain so?). A lot of these claims will require you to tell DWP about medical conditions and disabilities, in particular ESA (and JSA if you're disabled but able to work) will deliver practically a complete medical history into DWP's sweaty hands.

Now even organisations with a long term responsibility for medical privacy often make a complete arse of it, Big Brother Watch uncovered 2500 patient data breaches within the NHS on an annual basis, including data being stolen, posted on social media (50 cases a year!) and so on down to plain old-fashioned gross incompetence. And that is from an organisation focussed on medical confidentiality, with training and procedures in place and with a full understanding of its legal liabilities. DWP meanwhile is planning to hand medical data over to organisations which have never previously had the responsibility for holding medical data and all the extra legal responsibilities that brings under the Data Protection Act. Some of these organisations should hopefully have data protection policies and data controllers in place, but even for those DWP are talking about handing them data which raises their legal obligations to a much higher level. For organisations that have never held medically sensitive information, such as small employment-focussed charities, credit unions or social landlords, are they even going to be aware of their legal liabilities? Are their staff trained? Are their staff likely to have appropriate attitudes? Do they even need this information?

While there may well be cases in which people are happy for data to be shared, the reality is that a lot of DWP's existing knowledge of medical conditions and disability was given to them under the presumption that the data would remain within the organisation (as the Data Protection Act can reasonably be assumed to require) and in many cases was given with extreme reluctance in the face of an overtly abusive system (been there, done that). And the instant you have a change of circumstances that results in you falling into the clenches of Universal Credit, DWP has just written itself a get out-of-jail-free card that allows it to legally share that information with anyone it wants.

Longer Term - Where Will This End?

While people have been focussing on the immediate impact of this change, I think we also need to look at what it might mean in terms of what we know about DWP's longer-term data-sharing objectives. We have already seen individual DWP sponsored projects making a bid for direct access to our medical records, potentially for use in enforcing treatment as a condition of benefit receipt, we know DWP applied for access to the Hospital Episode Statistics database (summarising the details of every hospital stay) because it was one of the requests HSCIC turned down as too unreasonable to consider, at the same time they were freely handing the data over to insurance companies for use in price-setting. Meanwhile the Health Select Committee speculated that DWP will seek access to Care.Data, the controversial national database hoovering-up every patient's medical records from their GPs for research purposes (including commercial research purposes).

Outside of medical data, DWP's own Open Data Strategy states:

33. DWP is actively supporting the development of the National Fraud Authority‟s (NFA) intelligence sharing roadmap. IRIS will form one of the public sector hubs which will facilitate new data shares with other public and private sector counter-fraud bodies. DWP are continuing to work closely with the NFA in designing the intelligence sharing architecture and the legal framework.


39. DWP will ensure that the Universal Credit ICT system will support the production of aggregate data for use and re-use by industry and academia through open publication

And, getting back to health,

43. The publication of anonymised fit note data could provide healthcare professionals, individuals, employers and service providers (eg the occupational health sector) with an indication of the volume and content of fit notes at aggregate level. This in turn should help improve management of sickness absence and drive innovation in the occupational health and rehabilitation sectors

48. Linking welfare data sets. The Government will consider opportunities for linking welfare datasets to other government and commercial datasets to increase their value to industry.

49. Industry consultations have indicated that many data sets held by DWP have a high market value. However, this value would be enhanced in combination with commercial and other public data sets.

Equally, discussions at the Government-sponsored have had a significant focus on integration of DWP and HMRC datasets for use in a counter-fraud role. Combating fraud may be necessary, but many benefit claimants, myself included, know from first hand experience that DWP's response to alleged fraud tends to be intimidate first, ask questions later, no matter how ludicrous the accusation, no matter how damaging the consequences. When DWP attitudes towards data-sharing are primarily driven by their punitive use or commercial value, that makes extension of data under their control increasingly problematic.

The regulations under discussion here, together with the attitude to 'Big Data' shown above, betray the attitude to privacy that DWP is likely to bring to bear on HES or Care.Data if it ever gains access to them, and the threat that exists to what medical data it already holds. If DWP does gain access to HES/Care.Data, and we know that it wants access to this kind of data, then the (less than convincing) anonymity of HES and Care.Data is instantly compromised as the information is useless to DWP unless they decrypt individual identities and jigsaw the information with their own databases. This will create a situation in which every citizen's medical records transition into the hands of an organisation that, rather than seeing privacy as an obligation, sees itself in a punitive/data broker role and doesn't just want to share data, but is re-writing the law to ensure it can, no matter what the Data Protection Act might say. If DWP get their hands on our medical data on a national scale, then Medical Privacy in any real sense may cease to exist.

Tuesday, 20 January 2015

Benefit Cuts for People with Depression Who Refuse Treatment Are Barbaric and Misunderstand the Problem

According to the Express, the DWP is planning to cut benefits for people with depression or anxiety who refuse treatment.
A senior Government source said it was “bizarre” that a lot of ESA claimants with treatable mental health problems undergo no treatment whatsoever, according to the Sunday Telegraph.
“These are areas we need to explore. The taxpayer has committed a lot of money but the idea was never to sustain them for years and years on benefit. We think it’s time for a rethink,” the source said. 
“At some point something has to be done. Right now it’s an open ended contract.”
This is a seriously misguided policy, for several reasons:

1) It assumes that everybody with these conditions will respond positively to treatment. Having been under treatment of one kind or another for mental health problems for more than half my life, I can say with some authority that finding the right treatment is usually a combination of luck, experimentation and circumstance. Many people go through a range of anti-depressants, for instance, at a range of different doses, before they find the one that actually helps (and doesn't make things worse). If they find one that helps at all.

Many people aren't willing to go through the plethora of unpleasant side effects and repeated disappointment that are associated with trying yet another pill, and they shouldn't be punished for this.

Similarly with therapies; some are suitable for some conditions and some people, others are entirely inappropriate. 

2) This policy assumes that treatment is available for everybody. A whole lot of people who have tried to get 'talking therapy' treatments find they are unavailable, or they have a loooooooong waiting list that they won't ever reach the top of. 

3) We need to retain absolute autonomy over our bodies and our minds, and that includes having a choice over taking pills or letting professionals prod into our psyches. There are many, many good reasons that people may resist interventions, including having faced force or increased oppression in their previous experiences with mental health services. Forcing people into this system - especially if it has already let them or their loved ones down - will do far more harm than good.

4) No therapy or counselling will work if, for whatever reason, the client hates the idea. It just won't. 

This is a policy that is not only wrong-headed, it risks doing further harm to people who are already vulnerable. Cutting someone's financial lifeline because they can't bear to try yet another tablet or because they're scared to undergo counselling after their last counsellor was transphobic or tried to cure them of their gayness, or simply because they don't feel ready to face the issues that trouble them, is barbaric. 

Friday, 24 October 2014

An Open Letter to the LGBT+ Community

I went to see Pride last week. Yeah, I know it was released a month earlier but my dad was in hospital at the time so I was mostly just seeing the A12 as I drove up and down it.

It was a period of British history that I know very little about: I was only 5 in 1984. I heard mumblings about miners; but what 5 year old actually pays attention to the news? And it was certainly a long, long, time before I realised I was gay.

I went to see the film after 3 nights of no sleep because of a shoulder injury. Due to the sleep deprivation I was just a tad over-emotional. I spent the whole film alternating between laughing and crying, and was in floods of happy tears at the end. The second the house lights came up I had to make a dash for the nearest toilet to hide until my red splotchy face looked less red and splotchy.

The miners were probably the hardest hit during that particular 4 year term of office. And it was deeply heartening to hear a story about another oppressed group the government loathed - the LGBT community - coming to the support of others in solidarity just because it was the right thing to do.

But after the film I couldn't shake the thought "where are the LGBT community now while disabled people are being kicked even harder than the miners were then?"

The Centre for Welfare Reform calculated that severely disabled people will be hit 19 times harder by the cuts than other people. So many cuts that even I probably can't remember to list them all. But here are just the ones I can think of off the top of my head:

  • The creation of Personal Independence Payment to replace Disability Living Allowance. The intention was to reduce the budget by 20% by making the criteria stricter. DLA is only paid to meet care needs and mobility needs. It's to be spent on things like wheelchairs and having someone help you out of bed in the morning. Not exactly luxuries that a disabled person can cut back on. Did you know that now if you can walk a mere 21 metres you probably won't get that help to put towards buying a wheelchair? With the DWP and the private firms hired to carry out the medical assessments unable to organise a proverbial in a brewery; people are waiting for up to a year for their application to be processed and there are 145,000 people waiting for support they need to function.
  • Employment and Support Allowance is the benefit for people too ill or impaired to work. There are 394,000 people waiting to have their application for that processed. 394,000 waiting to put food on the table. Such an appalling system that we regularly read about people who were so ill that they died of their condition while allegedly "fit for work". Larry Newman and Cecilia Burns are just 2 of those people. The company doing the fitness for work assessments got it so wrong so often that 40% of appeals against their decisions were successful.
  • Two thirds of households affected by the bedroom tax contain a disabled person.
  • In most parts of the country; working age benefit claimants have had their Council Tax Benefit cut by 10%.
  • At the moment there's something called the Severe Disability Premium. It's not a benefit in its own right; it's a top-up premium on top of ESA/Income Support. The clue as to who is eligible is in the name: Severely disabled people. The eligibility criteria are so complex that only 230,000 people in the whole country are eligible. Under Universal Credit; the SDP is being abolished completely. Not made a bit stricter: Abolished.
  • The Independent Living Fund, which allows 18,000 disabled people with the highest care needs to live in the community, is being closed next year.
  • Social care is being cut to the point that continent people are being told to use incontinence pads because they're no longer allowed help to go to the toilet. Once I caught the local news while at my dad's house. A representative of Norfolk Council actually went on TV and said "we're cutting things like adult social care in order to preserve popular services like libraries." Disabled people are so loathed that council officials can go on TV and say that with their head held high.
  • We're all aware how this government made it more expensive to get an education. Did you know that Disabled Students' Allowance, which pays for things like Deaf students to have a BSL interpreter, is being cut? They recently announced these cuts are being postponed. Not cancelled, just postponed.
  • Access to Work, a scheme which funds support to allow disabled people to function in the workplace, has been utterly screwed up. Jess and Julie have both written recently about how these cuts are jeopardising their jobs. They are far from alone.

And these are only the cuts so far. Recently we've heard how the Tories want to cut housing benefit for 18-21 year olds, freeze working age benefits (which will affect disability benefits, despite Osborne's claim at the Tory conference), and pay benefits by cards instead of cash. Then IDS wants to charge income tax on support to pay for wheelchairs and for someone to wipe your butt, despite the fact that many disabled people don't see penny of it because it's immediately deducted to pay for support services. And, of course, Freud let it slip that he wants to be able to pay disabled people only £2 an hour.

Do you remember last Wednesday? It was a great day. For one day the entire country cared about how this government wanted to undermine disabled people's right to the same minimum wage as everybody else. He was the top story for most news outlets, he trended on Twitter all day: And for just one day it felt like the entire nation cared about our equal rights.

Then everyone went to bed that night and by the following morning most people had forgotten about us again. This week disabled people have been in court again fighting the Independent Living Fund closure. Where was the outrage this week that the government want to withdraw the funding that pays for severely disabled people to have food put in their mouths and their butts lifted onto the toilet?

I kind of get it. I mean, in 1984 LGBT people were really oppressed. Relationships weren't legally recognised, the age of consent for gay men was 5 years older than for heterosexuals. AIDS was misunderstood, treatments hadn't been developed, and it was far more stigmatised than it is today. There were no anti-discrimination laws protecting us from being fired for being LGBT or protecting us from being discriminated against by B&B owners when we just want a break for a couple of days.

Now we can get married, the age of consent is equal, HIV is a controllable chronic condition. We do have the legal right to sue our employer if they fire us for coming out at work and we can sue B&B owners who refuse us a room.

In 1984 LGBTs could look at miners and see people who were equally oppressed. The same can't be said of LGBTs looking at disabled people today. Except for those of us who are both LGBT and disabled; most LGBTs have the freedom to have a proper meal every day. The same can't be said for disabled people who are physically unable to cook, can't get social care for someone to help them with that, and so end up eating mostly just crisps. Most LGBTs can have a shower every day. The same can't be said of disabled people who were forced out of their accessible home by the bedroom tax, no longer have an accessible shower, and can only get clean by wiping themselves down with a flannel.

You have to remember that the LGBT community and the disabled community have so much in common in so many ways. We both still experience discrimination, even though it's illegal and we have the law on our side. It's a fight we both face. Hate crime affects LGBT people just like it affects disabled people. Some people are even attacked for being both disabled and LGBT. Both disabled people and LGBT people are massively unpopular with the senior party in the coalition: Not only are the Tories stripping away all the support systems that allowed for the equality of disabled people, but more Tories voted against equal marriage than for it. The law only went through because of supporters in the other parties.

The main difference between the 2 communities I belong to, of course, is society's response. When lesbians were thrown out of Sainsbury's, protesters quickly responded. A few days later a blind woman was kicked out of Tesco. Protesters were nowhere to be seen. Disabled people are more likely to be mocked for going shopping than supported if we get discriminated against in store.

In Pride we see Lesbians and Gays Support the Miners (LGSM) helping to fund and distribute food parcels to the striking miners. Where were the food parcels for David Clapson or Mark Wood? I don't mean to suggest that the LGBT community is in any way responsible for such tragedies for not being more supportive: But the handing out of the food parcels had such a resonance with the issues of today.

The film depicts LGSM getting to work before consulting miners about what it is they actually need. If LGBTs started supporting disabled people (LGBTSDP?); I'd beg of you to ask us how you can help. Disabled people's lives have historically been dominated by non-disabled people thinking they know what's best for us. There's a common saying in the disabled community "nothing about us without us," and that applies as much now as ever. A couple of years ago UK Uncut organised a protest specifically about disability benefit cuts. But because they didn't consult with disabled people for the meet-up arrangements: They chose to meet at a tube station that has no access for mobility impaired people.

Disabled people have loads of ideas for creative ways of challenging the cuts; but we need help to pull them off. We've written films about the ILF closure that we can't find anyone to produce. We organise protests and sometimes only 10 people turn up. There are far more LGBT people with social influence than disabled people. When there's a story like this week's court case we need the help of people with prominence to amplify our message because our collective voice amounts to a mere whisper; where potential LGBT allies have the power to really shout about it. Bronski Beat supported the miners; who is going to support us?

Another very common saying in the disability community is "rights not charity". In Pride LGSM start out their work with the collecting buckets to raise money. At the moment the disabled community is in a paradoxical position: We need to raise money in order to fight for the rights which are being stripped away. Paypal is the 21st century collecting tin and Disabled People Against Cuts are currently asking people to donate 50p to carry on their excellent campaigning.

Pride was a beautifully told story of the LGBT community rushing to the support of those who really needed it. I can't wait for it to come out on DVD so I can watch it again. But ever since seeing it I haven't been able to shake the slight feeling of sadness. There have been so many wonderful changes in the last 30 years that have benefited both communities I belong to. As a disabled person I first had the Disability Discrimination Act, which then became subsumed by the Equality Act. As a gay person I also have protection under the Equality Act. I can even get married now!

But the passion LGSM had for supporting people whose lives were being utterly destroyed by the government: The film just made me acutely aware that disabled people doesn't have that same support. And as someone with a foot in each community, that awareness is slightly frying my brain.

So, LGBT community. Please help us. Our equality, our independence, our jobs, our education, and even our lives depend on winning this fight.