Signed off sick

Part 3 of the ESA drama kicked off this morning. (Earlier episodes can be found here and here.) As usual, the vile brown DWP envelope arrived on a Saturday when the helpline is shut.

A summary of the story so far;

I accidentally discovered LB was entitled to Education and Support Allowance (ESA), got a sick note (A) from the GP. He wrote ‘indefinite’ for the length of the illness. A second sick note was requested (B) to backdate the first sick note by 3 months. A 20 page questionnaire needed to be completed for some shitbag company called Atos. JobCentrePlus only keyed in the details on B (Nov 11 – Feb 12) and suspended his allowance almost as soon as it was paid.

At this point, I couldn’t disentangle what was incompetence from what is a cynical and deliberately obstructive process, designed to obscure people’s entitlements and make it as complicated as possible to claim. And as for ‘sick notes’? Anyway, it was sorted. I thought.

Until today’s letter stated;

I am writing to tell you that the medical certificate you sent us, which covers the period from 17/2/12 to 10/5/12 is about to run out. Please send us another medical certificate by 11th May if you are still sick and cannot work.

Whaaaa???? You gotta be kidding me?????

After some raging about JCP incompetence and vile, cynical obstructive systems, I googled ‘medical certificates and ESA’. On a handy forum, rightsnet, the relevant regulations were highlighted, stating that two three-month sick notes need to be produced by the GP before an indefinite one can be accepted. Ah. So now I know.

But what do I know? What’s the basis for these time regulations? Why so many hoops? And how much does it cost to administer such a clunky, overly-bureaucratic and obstructive process? A process that is not fit for purpose for learning disabled people.

I don’t want to be part of a society in which dudes like LB are issued with ‘sick notes’ to exempt them from the workplace. He is not sick. He could thrive in a particular environment in which his strengths and abilities were encouraged, developed and valued. Instead his future, his potential and possibilities are constrained before he’s even finished school. By a system in which he’s already signed off sick. Indefinitely.

Clients. And the learning disability fug

Some people may think I’m disproportionately enraged by what I’m about to recount. They may raise their eyes to the ceiling and think ‘What a bligey old fuss about nothing. Get over yourself lady’.* Well sorry, but I think they are wrong. It is important. And the mundane context makes it all the more important because of what it reveals.

So. I went to collect LB from his after school club this evening. This is now run by the Guidepost Trust, a registered charity that supports a range of people. On their website they state;

In all our projects and services we start from the view point that every person is special and deserving of dignity and choice and this ethos runs through the Trust.

Now, I don’t have a particular beef with the Guidepost Trust at all. I don’t think (or I don’t know if) they are any better or any worse than any of the numerous charities that provide similar services. They all spout the same sort of stuff, about person centred planning, choice, autonomy, and so on. They all have the same sort of websites, leaflets and so on. It all becomes a bit interchangeable really.

But anyway, back to today. I rang through on the internal phone for someone to bring LB out. (Yep, you don’t get to go into the after school club to collect them, they are escorted out, but that’s another story). While I waited in the foyer, I looked at the new display that had gone up on the noticeboard, with various bits of information. The after school club laminated timetable stated;

3pm: Clients are brought across from the primary school.

Clients? Clients??? From the primary school??? I can’t convey how wrong, and crushingly depressing it was standing there, waiting for LB to appear, looking at that sentence.

Why am I so upset, angry, depressed, furious and outraged by such a tiny sentence? Because it demonstrates the shallow, meaningless, ultimately pointless attitude social care services (and broader) have towards learning disabled children and adults. It highlights the way in which disabled children are effectively institutionalised from such an early age. There have, on paper, been huge shifts in policy and provision since the 1970’s and the move from residential to ‘community care’. The introduction of the concept of person centred care, direct payments, Valuing People, etc, etc, etc, etc, etc. But for the bulk of learning disabled people, life remains pretty much as constrained, managed, exploited, abused, and perceived as worthless, as it was before the likes of the late Jim Mansell, and others, started to instigate change.

Ten years ago, David Race, in the introduction to his book – Learning Disability: A Social Approach – wrote;

I am struck by how many of the themes covered by the thesis cited at the beginning of this chapter [his PhD thesis on the historical development of service provision from the 1970’s] still remain. Congregation, segregation and devaluation even in the midst of community life all remain. Public fear of the ‘otherness’ of learning disability, stoked up further by a public media that seems unable to take a broad view on any issue, has left people in probably as vulnerable a position as thirty years ago when the scene was dominated by institutions.

Well, that still stands as far as I can see. And with the introduction of the Welfare Reform Bill, things can only get worse. Underlined by structures and processes that are steeped in meaningless rhetoric with no authentic engagement with the lives of learning disabled people or children. That no one involved in producing the after school club timetable could actually see outside of the learning disability fug of prejudice, lack of awareness and a carelessness (possibly created by attendance on relentless ‘professional’ courses) to suggest that perhaps ‘clients’ should be replaced with children or kids speaks volumes to me.

*I’ve left swears out of this post, even though they are pinging around my head, because my old ma keeps telling me to send these posts on to our MP (and he would be a bit put off by the colourful language). 

Benefit cheaters

The whole business of who should inform people of the benefits, support and services they may be entitled to has been playing on my mind for the last few weeks. In some work I’m doing, involving interviews with people with long term conditions, there are consistent reports of people not knowing. Not knowing they were entitled to x, y or z.

Similarly, I was surprised to be told by mates that LB has been entitled to Employment and Support Allowance since he was 16. Eh? Wha? Are you sure?? How do you know? (Other parents told them). How could I not know?

I cast my mind back over all the meetings I’ve had with various profs over the past year or so:

  • There was that DWP woman who travelled 100 miles to see for herself whether LB could manage his own finances.
  • Two annual reviews with a Connexion worker and a social worker in attendance, as well as school staff.
  • At least three meetings with a transition social worker (to increase LB’s care package (from 4 hours a month, to 4 hours a week and discuss the future).
  • The Direct Payments police.
  • School nurse, paediatric neurologist, adult neurologist, GP, local authority funded care agency… and so on.

Now I ain’t suggesting it is the responsibility of any one of the above to inform us of benefits. I’m just surprised that given the huge layers of bureaucracy and meetings that having a child like LB involves, we could get to him being over 17 without a mention of ESA.

On Twitter yesterday, a couple of people said there are welfare rights experts based in CABs (currently under threat from government cuts). But it boils down to the old saying; you don’t know what you don’t know. I didn’t know I should contact the CAB at this point (or a year ago). And, given the amount of time I have spent in meetings like the ones listed above, I suppose I didn’t think I needed to.

For me, there is an opaqueness to the benefit system in this country. So much information seems to be passed on from parent to parent, disabled person to disabled person, support group to members, rather than through ‘official’ channels.  I’ve had a shufty at the government website providing information about ESA and other benefits. Reading the information, it wouldn’t have crossed my mind that LB is eligible. A quick look at the other benefits/allowances left me as much in the dark. It took seconds to be told about ESA, by mates, and to be emailed the number I then rang to organise it. Seconds.

Makes me wonder, really, who is doing the cheating?

Twitter; what’s the point?

I love Twitter. But lots of people I know, don’t. They don’t get it. They hold onto facebook as a space for sharing stuff with chosen, monitored and policed others. Facebook is more intimate, apparently, and isn’t about stalking Scoph, Stephen Fry or Justin Beiber. Facebook doesn’t restrict status updates to 140 characters. What can you say in 140 characters for fuck’s sake? Well, I’ll come back to that..

I went to a social media talk recently by an expert from York University. He strongly cautioned against our increasing over reliance on social media, saying it would lead to us all creating very narrow social lives, funnelling down, bookmarking our favourite websites and increasingly closing ourselves off to broader social experiences. Facebook can do that. We select certain people that we allow into our circle and can even restrict levels of access to our personal lives. It is static, dated and restrictive.

Twitter smashes things wide open. Even though we choose who we follow, once we follow people, we can’t choose what they retweet to us. So if I was to follow 100 people, and they each followed a hundred people, and so on and so on (I ain’t no mathematician so I’m not even going to attempt to develop this equation/sum), that means I am potentially open to shedloads of information, in bite size pieces.

Yeah, yeah, yeah. I hear you twitter doubters say. What-effer. You can interact via email or facebook. Not as fast or as effectively. Increasingly, Twitter is part of media stories about particular events. Twitfeed is feeding into live tv and news coverage. It’s forcing governments, institutions, people to be more accountable. Through Twitter, a recent petition against proposed NHS reform has got over 170,000 signatures in a few days. Through Twitter a group of disabled people were able to raise funding, research, write up and disseminate their report into the proposed Welfare Reform Bill. Through Twitter (not through the BBC or other media channels) we know that Andrew Lansley’s recent trip to the Royal Free ended up with him being chased by a doc down the corridor to the words “Your bill is rubbish. And you know it!” Through Twitter, people are able to demonstrate and provide evidence of lies, deceit and cheating (largely by the current UK government at the mo’).

What can you tweet in 140 characters? Well, a lot. You’ve just got to be concise, pithy and cut out so much crap that we usually produce/circulate. It’s a liberating experience.

Twitter is what you make it. Depending on who you follow. It can be supportive, political, social, entertaining, funny, informative, creative and always fresh.

Finally, for mates that have shouted ‘help!, I don’t know how to use it’.. here are a few things that I’ve learnt in the last few months (or days;);

  • Use bit ly to shorten web links you want to tweet.
  • Don’t get overly hung up on what you tweet – just have fun
  • At first you are tweeting to yourself, but people will start to follow you
  • Don’t get hung up on numbers…
  • … but if your followers start to unfollow you en masse, you may want to revisit your tweet content 😉
  • #ff means follow Friday and is a way of sharing ‘good’ people to follow

Now, if someone wants to let me know the best way to manage lists, that would be great.

The Truly Disabled and the fakers

There’s been a right old push recently to present disabled people as a smallish group of The Truly Disabled (TTDs) and the rest, a bunch of scrounging bastards (BSBs).  The proposed Welfare Reform Bill is currently being deliberated in the Lords. In response to measured, well informed authoritative arguments by several Lords and Baronesses, the Welfare Minister, Lord Freud, mumbles and fumbles his way through a load of ill informed guff. This guff is underpinned by a version of the ‘biopsychosocial model of health and illness’. I can’t be bothered to unpack this pseudo scientific model  but basically, the government seem to be arguing that a lot of disabled people/people with long term conditions think (or pretend) they’re sick/disabled but they ain’t really. They just need a bit of a push to get ‘em off their backsides and back into the workplace. The ideal push is to overhaul the benefits system, remove the large numbers of people (BSBs) receiving lower rate of benefits and give TTDs a (slightly) bigger slice of the pie.

Sadly, it seems like a lot of the great British public are more than happy to swallow the ‘country is being dragged to its knees by this army of work-shy, thieving bastards’ line. Why that is, isn’t clear to me. But I bet anyone £1.20 that they’ve heard a version of the story “My next door neighbour is off sick… sick my arse” or “That toe rag from round the corner just got an enormous plasma tv and she ain’t worked for years” type stories on the bus, in the pub, at work, or pretty much anywhere. Any sign of flagging support for this thesis is quickly dealt with by sensational stories, such as Liddle’s ‘Pretend disabled really ARE sick’ (26/1/12, The Sun) or Dellingpole’s ‘The fake disabled are crippling our economy’ (Daily Telegraph blog, 26/1/12).

I’m sure some people do claim benefits/allowances when they shouldn’t. But I think it’s a very small number of people. We are social beings, after all. Work (whether paid or unpaid) is of central importance to our everyday lives. Not being able to work, through ill health or lack of jobs, is demoralising, depressing, frustrating, dissatisfying and can lead to feelings of meaningless.  Here’s an extract from an interview with a man diagnosed with Asperger syndrome*;

What do you with your days now then?

Waste time. I feel that I am wasting time. Make things to do really. I make things to do. There is no structure in my life. There is no structure. I don’t have to do anything, you know. It is not laziness I mean people could think it is laziness but it is to do with… I walk around in a sort of state of muddle, muddlement, you know, I am very often muddled… It sort of paralyses you. I don’t know if there is a better way to put it…. it is a lack of clarity, lack of clarity of thought. It is like a lack of perspicacity in my thought even…. You know I manage to fill my days. I fill my days in bloody Tesco’s and wandering around and reading bits and not reading anything properly in depth but just reading bits of this and bits of that you know. As I said, I have got the French and German newspapers and that. But it is all bits here and bits there. It is not, there is nothing constructive about it. Nothing structured about it. Nothing, you know, it is just filling in time.

I could go on and on, chucking out stats, referencing the Spartacus report (funded, researched and written by disabled people)  that lays bare the deceitful spin operated by the government in relation to the Welfare Reform Bill,  ask how the BSBs will be distinguished from TTDs in practice, demand to know how a cabinet made up of 23 millionaires (and probably 3 ‘pretty damn rich too’ ministers) can possibly have any understanding of the lives of  disabled/ill people, etc etc etc. But I won’t. I’ll just have a little thinky about how this will all pan out in the end.

According to Freud, getting back into the workplace (cough cough.. I know, I know… but let’s just pretend there are jobs for now, eh?) will ‘cure’ this group (AND help them bring up less feral children AND maintain their relationships). In practice of course, it will lead to (even more?) grinding, heartless, miserable, impoverished lives for a lot of people (and their families) and increasing health, social and economic inequalities between the rich and the poor.

And what about TTD? This gleamingly innocent, honest, worthy, hugely dependent group who will get a (well deserved) rise in their benefits? Well as far as I can see, they will be on a fast track to being patronised and pushed even further to the edges of society. After a few sensational, pathetic, heart wrenching stories are splashed across the media to make everyone feel better, of course.

*Interview extract from the Life on the Autism Spectrum section on Healthtalkonline.