Tag Archives: social security

Accentuate the Negative

One Legged Man Falsely Accused of Benefit Fiddle, I read. Wow, I thought. There’s a whopping black eye for the DWP…and the CPS too, who actually prosecuted a man for supposedly claiming for his right leg, conveniently ignoring his left leg. Hurrah! A positive disability benefits story! Well, no. Actually it’s not, if you read the article I’ve linked to. Yes, it exposes incompetence of an absolutely gobsmacking nature in the medical assessment and at every stage afterwards but look at the way it’s framed. Robert Punter and his consultant both emphasise the fact that he worked right up to the age of 63 as being evidence he wouldn’t make a fraudulent claim. So we’re back to the striver/skiver language. He must be innocent because he worked despite what sounds like a devastating injury. It wasn’t necessary for the consultant’s letter to Robert Punter’s solicitor to say that. The glaring mistake in the medical evidence the DWP claimed to have could be identified without including the consultant’s own opinions on the characters of Robert Punter and other patients but presumably he was eager to help his patient and thought his additional comments would strengthen the impact of his letter.

DLA is a benefit provided solely on medical need. The consultant’s letter seems to suggest that lots of patients try to get more money in benefits by trying to weasel their way into an assessment that they’re worse than they are medically. He says he has:
“witnessed over the years many patients with far more trivial problems who have gone to long lengths to maximise their symptoms so as to claim various benefits,”
Unfortunately, his letter reinforces the myth that huge numbers of people are fraudulently claiming disability benefits. Although his comments weren’t necessary, there’s no reason his letter should debunk the myth – it was sent to Robert Punter’s solicitor for a specific purpose. I wonder how patients who read that letter in the paper will feel though. How many will wonder if he’s pointing the finger at them? How many will trust him less as a result of this?

Of course, it’s the newspaper which is reinforcing the myth by quoting so extensively and not pointing out that only 0.4% of DLA claims are fraudulent. It’s the newspaper that doesn’t bother saying that DLA can be what’s needed to make it possible for some people to work: one of the arguments against PIP by recipients of DLA who work is that the reforms will make it harder for disabled people who are downgraded into a lower band or taken off the benefit completely to work because they use the money to help them to stay in work. If they even manage a negative spin on a case like this, what will it take to get a paper to write a story that doesn’t just become one more brick in a wall of negative rhetoric about disability and benefits?

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Benefits Britain

I got quite upset watching Benefits Britain last night and reading the comments about it on Twitter. So many people on Twitter were calling Karen a lazy scrounger. Nobody could stand her. Nor could I but that doesn’t mean I think she’s faking. There was a lot of sympathy for Melvyn and Craig but I saw none for Karen outside the WOW circle. I have chronic pain and even I had precious little sympathy for her because she was so whiny and I just didn’t like her (I appreciate she has several conditions but I’m going to focus on chronic pain here for obvious reasons). I felt let down by Channel 4’s choice of person to represent invisible disabilities. It seems people saw Karen as ignoble and obnoxious. She wasn’t bearing the conditions she has with “quiet dignity”. There’s no law saying people with disabilities have to be likeable though. It’s not a condition of entitlement to benefits either. It’s like the convention that people diagnosed with cancer suddenly become angels on the day they’re diagnosed. Two words: Lance Armstrong. It often seems like the public wants disabled people it can admire and pity in equal measure. People want heroes overcoming all odds, like Paralympians. They want Tiny Tim. But, when all’s said and done, disabled people are just people: good, bad, indifferent, imperfect people.

Karen was criticised for her answers during the work assessment, particularly for saying it hurt to lift a potato. Only Karen knows the truth of what hurts and how much. Not Twitter, not me. Watching Karen, I understood where her responses could be coming from. It’s hard to answer questions in an assessment when you have chronic pain. Many people with chronic pain can perform a lot of different actions once, on the day, but if they do it without giving feedback that it hurts or that they couldn’t do it repeatedly they run the risk the assessor will note that they’re always capable of doing it when the reality is that they might have a flare up tomorrow from doing it once and might cause a long term deterioration in their condition if they tried to do it regularly.

I believe Karen’s report that the pain increased when she picked up the potato – she pointed to the outside of her arm when she said it and I get increased pain from even lightweight lifting there too, although it’s a small and fleeting increase. If I thought her response was excessive at all, it was because the rules of the game say it’s unwise to remark on an increase in pain for such a minor action, assuming her increase in pain was relatively small. Doing so runs the risk that the assessor (whether a pure medical assessment or DWP one) will say you’re exaggerating and/or affected by psychosocial issues. Exaggeration is what viewers tweeting negatively apparently thought. Karen didn’t say it hurt a lot, just that it hurt, but that was enough to generate a lot of negative tweets.

I don’t know what happened to Karen before she was diagnosed with the conditions she has. Maybe it was a smooth ride from initial appointment to diagnosis. Maybe it was a pitched battle. I suspect that at some point it was a pitched battle because I’ve seen the frustration she exhibited over not being believed before. People suffering from chronic pain have to walk a path through the healthcare system but it sometimes seems like an invisible path. Say too little and you don’t really need help. Say too much and a diagnosis of depression is as likely as tests to find a physical cause for the pain. I’ve never had that happen to me but I spent over three years under one particular GP who seemed to think that I was too fragile a flower for the legal profession, that the pain was all in my head and induced by stress, while throughout that time a disc causing debilitating pain was growing ever more (as the surgeon later put it) rotten and my muscles were being put under strain, forced to compensate, in ways I haven’t recovered from yet and may not ever. I can see judgements being made by doctors on an person who comes off as abrasively as Karen and I can see her becoming more and more abrasive as a result.

If she’s defensive, even allowing for the possibility she might always have been unlikeable, it may be because she’s been made to feel like a liar so many times that she can’t help it. I don’t have to like her to understand it because I’ve been through the “I can’t fucking win” feeling. In one mind boggling case, an insurer’s assessment concluded that the surgeon who diagnosed a degenerative disc was just a trigger happy scalpel jockey who enjoyed cutting people up way too much for his diagnosis to be trusted. I paraphrase, but only barely. The surgeon was absolutely livid.

If Karen has been on benefits for some time, this could also be relevant to how she answers. When I made my first Incapacity Benefit claim I rang for guidance on completing the form because some of my symptoms fluctuate. The questions were similar to what Karen was asked, with multiple choice answers. I was quite clearly told, “tell us how it is on your worst days, not how it is today.” I don’t know what the DWP currently says but that’s the rule a long term recipient of Incapacity Benefit would be used to.

Among the tweets were some saying Karen was physically capable of doing a desk job involving typing if it wasn’t for her fake nails. I’m not going to get into how she spends her money but being in pain all the time can drag you down and it’s not controversial to say,  “find pleasure in the small things.” It’s a topic you might find on chronic pain forums and my pain clinic says to find things which make you happy. The small things can take many forms. Mine include star gazing, watching the wildlife and my cats but there’s another one that makes me think maybe this is why Karen has such cheerful nails. I mentioned in my last post I usually pick clothes to wear which reflect or enhance my own happiness. I started doing that after surgery, with a dazzling and mood lightening array of different coloured vests and pj bottoms.  Rather than carping at Karen, could we consider the possibility that she deserves one thing in her daily life that takes her mind off the pain in the moment she looks at her brightly painted nails?

One of the factors taken into consideration when determining if a person’s pain is “all in their head” or exacerbated by psychosocial issues is their appearance. Someone who makes no effort could have it held against them by an assessor (even the underwear you wear gets judged. Plain cotton is the best way to go. That’s not just personal opinion: I’ve read academic papers on the subject…on psychosocial issues, not undies generally!). In a medical context, bright multi-coloured fingernails could suggest someone who is not just making an effort but who has a sunnier nature than the stress of a medical appointment might display. When it comes to work assessments, this is another no-win situation though. Make too little effort and the same negative conclusions could be drawn. Make too great an effort and, just like the viewers who tweeted on this, the assessor could take it as a sign you’re less impaired than you’ve said in your forms.

Speaking of appearance, the “potato incident” suggested something about her appearance to me. Styling my hair hurts a lot in that part of the arm and in my shoulder. I used to hate my curls and only learned to love them after I realised by blow drying I was putting myself through unnecessary strain. Now I only blow dry my fringe (which, again, I love now but only had put in last summer after my hair temporarily thinned after a large number of steroid injections were administered in one go). It hurts even to do that. Often even lifting my arms to put my hair in a ponytail hurts. I think about Karen’s cornrows and wonder if she’d always have chosen them, whether she’s happier with them than if she was still able to tame her own (probably much tighter) curls (if she did before), whether she’s come to terms with losing a measure of control over her own appearance.

Back to the question of her ability to do a sedentary typing job. A reminder in case anyone reading this is new. I do work. I work part time. It hurts like hell every single working day. It hurt like hell to write this on my mobile even though I wrote it in chunks. I didn’t catch which part(s) of Karen’s back are affected because I missed the start of the programme, although that one little mention of pain in her arm that provoked so much fury suggests to me that typing could be out of the question. The chronic nature of her pain is also relevant. Doctors now know that, regardless of what the underlying cause of chronic pain is, pain begets pain. I’ve been told several times that by living in a daily “pattern of pain” where I peak and trough throughout each day of my normal working life instead of having the more normal non-pattern of good days and bad days (flare ups), I’m risking making my body’s ability to process pain worse as well as risking joints and muscles. That’s what Twitter (and the Daily Mail, of course) could be demanding Karen should do. But then, I didn’t see Channel 4 explain to viewers what strain different types of work would put on someone like Karen by modern medical standards or how chronic pain itself affects her body. Did I miss it? Channel 4 got the “money shot” of her refusing to do the work experience they were offering. In the context of the show, I thought she made the wrong choice. It’s one day. She’d probably have a flare up afterwards but it’d settle down again. That’s not to say she’s fit to work in the real world, just that I wish she’d stopped to think about the image she was putting out there.

Channel 4, you let us down. You hurt me. It’s your fault if people with invisible disabilities felt like Twitter was rounding on us during and after your programme. It’s your fault for not acknowledging prejudices and ensuring you had three people with similar personalities. It’s your fault for casting a wicked witch for dramatic effect. You know what, Channel 4? I hate you a little for that. I really do. There is one thing Channel 4 could do now to help the people it hurt by broadcasting this. Presumably it verified Karen’s medical conditions before making the show and verified their impact on her. It would be the sensible thing to have done. If it did, it should make a statement to that effect on the news and both before and after next week’s programme.

Notes:
For more on perceptions of people with invisible disabilities, I’d (not very humbly) recommend Looking Good: Invisible Disabilities where I picked out quotes from a study on the subject.

The programme mentioned rates of employment of disabled people in 1949 and today. The high rate of employment in 1949 wouldn’t have included Karen. For a detailed review of disability discrimination in the jobs market today I would (even less humbly) recommend How many elephants can you get in the DWP where I reported on the avalanche of evidence I found on the scale of disability discrimination and the fact that the Government isn’t doing enough to change things.

The Bedroom Tax

I first wrote this in March but Nick Clegg made me so furious when he suggested that the Bedroom Tax is necessary due to long waiting lists that I decided to reblog one of my own posts for the first time. The Tory part of the coalition told us when the Bedroom Tax was introduced that they were doing it to save money. Clegg now claims it will redistribute social housing. Even if the Government’s goals have changed, it won’t redistribute social housing. North Herts made a handy case study to prove the point…

While I’m on the subject, the Director of Aragon Housing in Bedfordshire shared their review of the first 100 days of the Bedroom Tax with me last night. As she put it, they’re just across the border (Incidentally North Herts Homes also owns properties in Bedfordshire). I’m hoping they’re not the only ones and plan do a future blog on it but it’s great they’re collating and sharing this information so I thought I’d pass it on now.

Law Geek's Blog

The bedroom tax. Apart from the financial and social problems it will create, I couldn’t help wondering how it could be expected achieve anything other than making a large number of people poorer. There have been so many personal stories, particularly involving disability but the question I kept coming back to was, what the hell is the point? That’s what sent me looking for more information. The Government’s stated aim is not to reallocate resources more effectively but to cut the cost of housing benefit. The fact that this change is only being put in place for working age people in receipt of housing benefit underlines this point. Retired people who are underoccupying are completely unaffected. A property is underoccupied if there are any bedrooms left over after:-
A. an adult couple sharing one room
B. two mixed sex children under 10 sharing
C. one or two same sex children…

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WOW, impact assessments and consultation

When I reviewed the provisions of the UN Convention on the Rights of People with Disabilities, by reference to a Report from a Joint Committee on Human Rights published in March 2012, I suggested that the Government’s failure to perform a cumulative impact assessment of it’s reforms, its response to the WOW Petition and its refusal to engage even with an mp (Michael Meacher) who supports the call for a CIA (all of which prompted that post) could breach the Convention. Last week, during a Commons debate on the need for a CIA Employment Minister Mark Hoban repeated the DWP’s line that it’s just too difficult to carry out a CIA and was mocked by Liam Byrne who suggested that if the UK can host the Olympics, participate in space programmes and have military operations abroad its government ought to be able to carry out a CIA. I’ve finally started to go through the rest of the Committee’s Report on the UK’s implementation of the Treaty and the Committee had this to say on the then Welfare Reform Bill (it received Royal Assent a week after the Committee’s Report was published):

“In our legislative scrutiny Report on the Welfare Reform Bill we noted criticisms of the impact assessment process for that Bill. Equality impact assessments were not published by the Government until the Bill was in Committee in the Commons, and, while equality impact assessments have now been published for distinct parts of the Bill, these do not attempt to assess the cumulative impacts of multiple provisions in the Bill on particular groups with protected characteristics. This is of concern, since at least some individuals will experience these changes cumulatively, and their impact needs to be understood in this way. For example, a disabled person may find that they lose their lower rate DLA, and therefore become subject to a cap on their housing benefit such that they cannot afford to remain in their home. Moving may disrupt informal patterns of care and support at the same time as they have increased reliance on these supports.”

And

“We are concerned that the UNCRPD, and Article 19 in particular, does not appear to have played a central role in the development of policy. Inadequate attention has been paid to the impact of relevant policy on the implementation of the UNCRPD, in contravention of Article 4(1) and 4(3). We recommend that the Government make a clear and unequivocal commitment to Parliament, equivalent to that which it has already given in relation to the UN Convention on the Rights of the Child, that they will give due consideration to the articles in the UN Disabilities Convention when making new policy and legislation, and in doing so will always consider relevant recommendations of the UN treaty monitoring bodies.

“However, if properly carried out, equality impact assessments provide an important mechanism through which to ensure policy achieves desired goals and avoids unintended consequences, and help to demonstrate transparency and accountability. We recommend that they should be produced early in the policy-making process with the full involvement of those likely to be affected by the policy.

“Given the breadth of the current reforms, the Government should publish a unified assessment of the likely cumulative impact of the proposals on independent living, and set out any relevant mitigations through the Disability Strategy. The relevant strategies in the devolved administrations should also include such mitigation plans.

“We regret the exclusion from the English specific duties under the new Public Sector Equality Duty of the requirement to conduct equality impact assessments. The Government should either revise the duties accordingly, or promote equality impact assessments as a matter of good practice, with the assistance of other expert bodies such as the Equality and Human Rights Commission, Scottish Human Rights Commission, Equality Commission for Northern Ireland and the Northern Ireland Human Rights Commission. We welcome the willingness of the Secretary of State for Justice to consider the impact assessment methodology being developed by the Scottish Human Rights Commission and we look forward to the outcome of that consideration.

“Our evidence suggests that equality impact assessments have not played an important part in assessing the impact of recent policy on disabled people in the context of the UNCRPD, because of poor quality, or untimely, EIAs. There also appears to be some confusion over the requirement to conduct EIAs, which the Government should clarify.” 

So, the Committee said that in March 2012. You’d think we wouldn’t need the WOW Petition. You’d think the Government would take these conclusions on board and act on them. Instead, in November 2012 David Cameron announced at a CBI Conference:

“Let me be very clear. I care about making sure that government policy never marginalises or discriminates. I care about making sure we treat people equally.

“But let’s have the courage to say it: caring about these things does not have to mean churning out reams of bureaucratic nonsense.

“We have smart people in Whitehall who consider equalities issues while they’re making the policy. We don’t need all this extra tick-box stuff.”

“So I can tell you today we are calling time on equality impact assessments.”

Apparently the “smart people in Whitehall” conveniently forgot about the Committee’s Report. Even before that speech, in May 2012 the Government had launched a review of the Public Sector Equality Duty. It called for evidence but, crucially, said it wouldn’t be opening the subject up to consultation. Why’s that crucial? The obvious reason is because it would meet with opposition but the other reason for the purposes of this post is that the Committee’s Report on the Disabilities Convention also considered the issue of consultation. It seems obvious to me that the Report’s conclusions on both consultation and EIAs would also apply to Cameron’s plan to drastically scale back the use of EIAs where disabled people may be affected by proposed policies. The Committee concluded:

“The UNCRPD specifically requires disabled people to be involved in the implementation of the Convention, and the Government have acknowledged the importance of such involvement. We recommend that the Government aim to involve disabled people in the development of policy, rather than simply consult them, and to ensure that timescales and methods are used which enable a full range of disabled people and their representative organisations to be involved.

We are disappointed that the English specific duties under Section 149 of the Equality Act no longer encourage the involvement of disabled people. This is a retrogressive step. The Government should actively promote involvement to public authorities as a means of meeting their Equality Duty and in order to comply with the UNCRPD.”

The Report noted that consultation does happen on various levels but also that some people felt that consultation tended to be with “the usual suspects” ie household name charities. Then Disabilities Minister Maria Miller’s defence of the Government’s record included the boast that they’d had over 5,000 responses to the Consultation on the replacement of DLA with PIP. I’ve checked. The DWP received 5,500 reponses, nearly 2,500 of which came from individuals. Protests at the reforms were met with the response from Miller at the time that they were symptomatic of problems with the existing system, demonstrating that one key to effective consultation with disabled people is whether policy makers are actually willing to listen and engage with them – Miller wasn’t and I’ve seen no evidence since that any DWP minister is.

The Report didn’t specifically address the issue of activists like WOW, Sparticus and Pat’s Petition. Disabled people are grouping together, carrying out research, professionally writing reports like this one (pdf) and taking to the streets in protest. Disabled people are stakeholders and clearly don’t feel the various relevant charities are contributing enough to the policy making process. Rather than being treated as stakeholders, activists are ignored at best. At worst they’re subjected to scorn and derision, facing the accusation that you can’t be that disabled if you’re able to give a detailed professional response to a consultation, organise opposition through social media or attend any relevant meeting or protest. Paul Maynard mp went even further in the House of Commons on 10 July, accusing disability activists of being “extremists”. From where I sit, if you have a vocal group of disabled people and their carers who want to engage you over your reforms, it’s shameful to ignore them and disgusting to try to undermine them with language usually attached to religious fundamentalists and terrorists. In fairness to Maynard, Pat’s Petition has reported he regrets his use of the word, following communications between Pat’s Petition and him.

This is a long enough post already so I won’t say anything more about Maynard but the fact is that nearly 50,000 people have signed the WOW Petition. I’m one of them and, if you aren’t yet I’d urge you to become one. The WOW Petition is necessary because the Government refuses to listen. It refuses to engage with disabled people. It refuses to acknowledge that the arguments for a cumulative impact assessment have merit. As I said in my earlier post on the Convention, individuals can’t bring claims against the Government solely on the basis of a failure to comply with the Convention but that doesn’t mean it’s not binding on the Government or that the UK courts and the European Court of Human Rights can’t rule that breaches have occurred in appropriate cases (see my earlier post for more on this). Apparently, the UN has also been made aware of the situation.

The UK should’ve been leading the way, setting an example for the countries it encouraged to sign the Convention. Instead this Government been guilty of wilful ignorance over the most basic of issues (namely whether the Convention is binding on the UK at all), has deliberately introduced reforms which take the rights and living standards of disabled people backwards and has done so without appropriate consideration of the consequences of its actions. The result has already been a reduction in the independence of disabled people and an increase in poverty among disabled people. Yesterday David Cameron launched the hashtag #DisabilityConfident. I’m confident of this: many more disabled people will suffer as a result of his Government’s policies if it doesn’t change course.