Monday, January 31, 2011

Criminally Crippled Capers

Last year when I first got the BendyBus I decided that it was my ultimate aspiration to be arrested for drink driving it. Until Roland shattered my dreams by informing me that I could lose my driving license for drink driving a mobility scooter. Even on the pavement. The judicial system has a serious sense of humour failure when it comes to 'invalidity carriages', the DVLA recently spoilt tank wheelchair man's fun by telling him he needed a special license to drive it on public roads or land. So, no drink driving the BendyBus, which to be fair as I don't drink and rarely go out might've been hard to acheive in the first place. But never let it be said I allowed something so trivial as reality get in the way of  my dreams.

On Saturday I went to see ConventGirl sing at a local fundraising gig. I was not allowed to rant about the deep inappropriateness of raising money to experimentally 'cure' a disabled child whilst at the actual gig, being there soley to support my friend, but happily no such restrictions have been put on my ranting outside of said gig. I can just about manage to contain myself to a "what the fuck?!" but only because we'd otherwise be here all day while I repeatedly fell off my soapbox.

I spent so long scattering the entire contents of my wardrobe across my room in a frantic search for an outfit that would be nice enough to wear out but also warm enough to sit on a mobility scooter in the freezing darkness in, that I was too late to meet the other friend coming along to the gig and had to make him sit and wait while I continued getting ready in my specially disorganised way. Sorry. I blame the drunken neighbours who arrived just before him for delaying me and not at all the clothing mountain.

We made it to the gig with time to fulfil my official role as destresser of ConventGirl and were joined by another of my neighbours. Overall the event was woefully poorly attended, perhaps because I wasn't the only one muttering 'what the fuck' while steam came out of my ears about the inappropriateness of the 'cause' but we had great company and a nice time. ConventGirl was of course brilliant and I am not at all biased. The others all had to leave before me and I wasn't happy about driving BendyBus solo down the bar lined main road in the post pub period so waited for ConventGirl to walk me home.

Except by the time it came to 'walk' home we might've been a teensy bit inebriated. So inebriated that giving ConventGirl a backy on BendyBus seemed like the best idea we'd ever had. Off we set along the pavement of the main road, starting and stopping as we variously lost gloves, had to put BendyBus back together and searched for a lighter we couldn't find anywhere.The few cars and cabs which went past seemed most amused to see two women weaving along the pavement on a mobility scooter which only encouraged our conviction that this was absolutely the best way to travel.
Moments before Police. Stop. Action!

It was then that a ginormous yellow 'police, we're filming you' CCTV van pulled up alongside us with window wound down, and a rather cute looking copper leant out to enquire of us "Ladies. Is that actually made for two?" I managed to shake my head, and agree that it wasn't before dissolving into uncontrollably hysterical naughty schoolgirl type giggles. ConventGirl leapt off BendyBus and attempted to convince the policemen she was sober 'honest officer' and just seeing me home safely. I was beyond any kind of convincing and purely concentrating on not falling off BendyBus with laughter. Fortunately the policemen looked equally amused and drove off leaving us where we were, we were both laughing so much it took us a few minutes to get it together enough to go anywhere by that point.

After reflecting upon events we decided that the fates had probably stolen the lighter to protect us from ourselves.

A Week To Go On The Petition

 By Rhydian

Things are hotting up now that there are only two weeks left until the Disability Living Allowance reform consultation closes on the 14th of February. The Broken of Britain has arranged for EDM 1332 in Westminster, a Statement of Opinion in the Welsh Assembly, and otherwise campaigning and lobbying. However, our first action was this petition calling on the Minister for Disabled People to recall the consultation and cancel reform plans. The petition will be presented to Parliament, and entered in the Hansard records to record the opposition to reform for posterity.

When the petition is submitted, we hope to have 10,000 signatures. At the moment, there are 3,786. The target should not pose great difficulties, as there are 3.1 million DLA claimants in the UK, so gathering 6,214 signatures in a week should not be a problem. The only obstacle is making sure that people know about it, and this is where we need your help. We need you to blog about the petition; tweet about it, e-mail the link to family and friends; post it on your websites. You can even accost random strangers on the street, but we don't recommend it... Best of luck!

Sign here

Sunday, January 30, 2011

Disability - This Time It's Personal

 A guest post by Paul K. Originally posted here;


This one could be a long rant, but please stay with it because it is, I believe, important. Never, in my memory (which stretches almost back to the Atlee government that started much of what is now under attack) has “Welfare” been so vulnerable.

Those who have braved this blog before will remember that I am “disabled” – I am severely hearing impaired, effectively deaf – albeit I can still hear sounds and use guess-work and a hearing aid in my one ear with a fraction of its original capacity to muddle along. I am, however, extremely fortunate in that I am employed, full-time, in a reasonably well paid job. I am not dependent upon the state for my ability to survive. Actually, judging by the amount of taxation – I think it might even be the other way around.
I want to say two things this time: how my disability has hidden effects upon my life; and how the word “disability” is bandied around by politicians – across the political spectrum – who simply do not know what they are talking about. Simplistic generalisations are used, as if every disabled person fits a “norm“. That’s like saying all MP’s are dishonest, because a few have been caught fiddling expenses.

First up, me: as I have said, I am severely hearing impaired. This has obvious effect, in that I hear little and what I do hear is often distorted or muffled, so I have to either ask for repetition (not always easy in busy shops or bars) or “guess” and hope I don’t misinterpret (it can be embarrassing!). I have, on occasion, said “Yes” – or smiled – thinking one thing was said, when they asked something very different. Fortunately, I am large enough to get away with it most times, others may not be as fortunate.

There is though another “consequence” of my condition. One that close family and friends have started to observe. I am becoming isolated; I am becoming “anti-social“. I don’t mean in the context that I charge around drunk being abusive – I mean that I don’t socialise anymore. I opt out; I make excuses; I stay home. Worst of all – I tell lies. Not huge , damaging ones – little white ones instead. I make up another life, to excuse my non-participation in work or other social events. In short, I am becoming a semi-recluse.

Very few pubs or restaurants nowadays don’t have background music. This makes my limited ability to comprehend even less effective. Many pubs now have large screen TV’s blaring out either sports or music videos. I know when I’m beat, so I have given up. Even close friends start to look frustrated when asked to repeat something for a third or fourth time. I can’t even lip read (limited as my ability is) because many pubs also dim lights now as well! It is almost as if they are saying “No Deaf wanted“!!
At least at home I can control the environment. I can use my assorted gadgetry to understand TV programmes, I can call up subtitles on DVDs, I can converse in a room that is well-lit and free of other noise; but that is not the same as a night out, is it.

I wonder how many other disabled people have similar problems? How do visually impaired cope with poor lighting and with the plethora of street furniture? How do mobility impaired cope with steps, or with “fashionable paving” which is cobbled or such?

This brings me to my second point. The generalisation of the term “disability“. Legislation is passed as if all disability has similar impediments, identical problems or same solutions. What is “disability” ? Apart from my own insight from a selective personal experience, I have also worked as a Welfare Rights Worker for something like 20+ years. It isn’t a simple diagnosis.

There are the obvious disabilities, such as sight impairment and wheelchair users, but they have differing needs too. Some visually impaired were born with their disability, others had traumatic loss – each will have differing needs. Some have no sight, some have limited vision; some have blind spots, some have just the ability to define light from dark. Some will be confident, some will be terrified. It isn’t a simple case of s/he has (a) so can do (b) . . .

Then there are those with learning disabilities – again, to a degree, visible. Downs syndrome is a classic case, but not all people with this condition have an identical set of needs. We are all different; unsurprisingly, so are they!

Then there are the invisible disabilities. In my many years of supporting and representing people with various difficulties, nothing  struck me more than those poor souls struck with Crohn’s Disease or Ulcerated Colitis. In short, they are often housebound out of fear of an explosive problem “down below“. I can recall a man – a former Master Butcher in a high street chain – who simply reduced to tears when describing the embarrassment of incontinence caused by his condition. The Benefits Agency (as it was then) argued that incontinence pants solved the problem, but would you be happy walking around in a “nappy” full of . . . well, you don’t need me to be that graphic. What does he do about the looks of horror from the smell? Who hasn’t sat on a bus and joked about a baby needing changing? Imagine if there was no baby, but a 50-year-old adult instead?

There a multitude of differing disabilities; and an equal number of abilities to cope. I haven’t even touched on the disability with perhaps the biggest stigma of all; mental health. There are many insightful blogs out there with greater knowledge than I have, I urge you to seek them out and read them. I have been fortunate to have many wonderful clients, some who I am proud now to call friends, who have mental health problems.

I represented one particularly lovely lady FOUR times, over a period of about 5 years, at Social Security Appeal Tribunals – twice for DLA, twice for Incapacity Benefit. We won all four, and overturned decisions to stop benefit, but at a price of stress, sleepless nights and – in some cases – self harm by the claimant. Always the combined evidence of Consultant psychiatrists, of GP’s, of Social Workers and of family and friends, who have known the individual for years, was rejected in favour of the ATOS (or whichever profiteer had the contract) diagnosis, based on a 20 minute interview. Sorry, the only word I can think of is “Outrageous“.

The current thinking is that most people are better off in work. As someone who has “worked” continuously since 1969, there are mornings when I wonder – but, if I am honest, I accept that “paid work” does give a focus, a dignity and – most importantly – a degree of additional financial support. Contrary to the mythology, few on benefits are well off.

However, where is the employer who will tolerate the BiPolar Affected person who is full of energy and ideas one week, then incapable of getting out of bed the next? Most disabilities place some restrictions upon the sufferer. It is a competitive employment market – we have the Equality Act (incorporating much of the DDA) – but we still have prejudice too.

I believe I am fair and impartial in political terms. I think NONE of the parties have a clue; or maybe they do but simply don’t care? As I said in an earlier blog, by scapegoating the tiny minority who may defraud the system you often have a deterrent effect upon many who are both eligible and in desperate need. No one wants to be labelled a “benefit scrounger“, though some TV producers would be lost for programme ideas if they didn’t exist. Fear of being thought as a cheat is now costing some people their lives.

This is an important issue. Please support those campaigning for social justice for those least able to cope in these times. A mark of a truly Big Society is one with the heart to protect the weakest.

Thank you, as ever, for listening :-)


PaulK

Saturday, January 29, 2011

Final Call For DLA Consultation Submissions

By Rhydian

There is little over a week now to send me your own contribution to the joint The Broken of Britain/CarerWatch submission to the consultation on DLA reform: rhydian@thebrokenofbritain.org

The submission will be sent off on the 10th of February by special delivery, to be certain that it arrives at the DWP by the 14th of February closing date. I will make every effort to include all evidence that is sent to me, or posted on the relevant threads in The Broken of Britain and CarerWatch forums. Having said that, please try to ensure that the evidence reaches me by the 7th of February at the latest so that I can edit the final document in time. To find out how to help me with preparing the document, click here.

The blog post below is written by Tony of the West Yorkshire branch of the Huntingdon's Disease Association. He has prepared his own submission to the consultation, and it is posted here to give you some ideas. The Broken of Britain/CarerWatch submission is being written on behalf of people who don't have the time/energy/inclination/spoons to write their own, but if you can and are confident in your ability to write, I urge you to send your own submission.

Huntington’s Disease and the proposed PIP
HD is a genetic condition, if you had a parent with the condition there is a fifty - fifty chance you will inherit it yourself. The disease usually strikes in early middle age and involves a progressive physical and mental decline. The most pronounced symptom is the one that gave the disease its old name of Huntington’s Chorea, choreatic movements being uncoordinated and jerky. The cognitive symptoms can be many and varied and differ from person to person, as can the level of disturbed movement, the overall outcome however is always without exception an inevitable decline and death. My partner is at risk of developing the illness, her brother already has it.

Is the ‘Social Model’ of disability up to the job?

The proposed new Personal Independence Payment(PIP) will it is stated, rightly take account of the social model of disability but that model was never intended to be a universal one, there are some people with deteriorating neurological conditions such as HD for whom the social model just does not suffice. People with HD will usually have had jobs and been useful active members of society, it is their progressively worsening medical condition that has lead them to lose those jobs and to require help with their mobility and care. Of course the government should assist them to remain in employment as long as they are able but for the most part we are concerned here with people too ill to be capable of any employment. The ‘barriers’ they face are as much medical ones as social.

Is there a role for a new ‘PIP’?
Where a PIP could have a role with regard to HD is through those people who are at risk of developing the condition. Imagine what it feels like to spend every day of your life wondering if you are going to inherit the illness that you have already seen kill your father or mother? There is a genetic test but as to be tested positive is to receive a death warrant with only the date left blank many choose not to take it. Because of the stresses the disease causes therefore, families of HD sufferers should be entitled to receive help from psychotherapy services currently almost impossible to secure on the NHS. The children of sufferers may need extra tuition to compensate them for missing school due to their caring roles. Such examples are legion and are demonstrative of some of the ‘hidden’ barriers people from HD families face in society currently, for which they receive no help.

The problem of individual assessments
With regard to personal or individual assessments of eligibility; the question has to be asked, what good purpose can this serve? The progression and prognosis of the disease are well known and not subject to massive variation. There has been an assumption, based on sound experience in the past that individuals with HD will have specific needs and the prognoses for the illness have not changed.
Having to undergo eligibility tests for any benefit is particularly problematic for HD sufferers for two reasons connected to symptoms of the disease. HD sufferers are prone to anxiety and obsessive behaviours and the two issues have an unfortunate tendency to come together around issues of benefit applications; many HD sufferers become extremely anxious that they will somehow ‘fail’ an application, and indeed they can become obsessive about it, feeding their anxiety in a vicious circle of behaviour that is incredibly distressing both for them and for relatives caring for them. The language of individual assessments is fine no doubt in many contexts but for some such as those with HD it is the prelude to a living nightmare that can not only ruin day to day living for weeks if not months, but may also through the stress involved actually worsen a person’s symptoms.

There is another reason to be very wary of individual assessments in the case of HD and that is that the condition often carries with it symptoms of denial, this is an organic aspect of the condition known as anosognosia and not ‘merely’ a psychological refusal to acknowledge symptoms. Victims of HD often simply cannot see that there is anything wrong with them; they will indicate that they can perform all sorts of tasks that are in fact way beyond their capabilities, if this is not a potential disaster area of botched assessments and time wasting appeals then it is difficult to conceive what is.


Does the PIP impose its own barriers?


It should surely be a goal of a non means tested disability benefit in a civilised society to ensure that claimants have a standard of living that allows them to live their lives in at least some comfort similar to their non-disabled neighbours, this is after all what the social model of disability is ultimately about. The current system of DLA allows for this in the case of HD sufferers, the proposed PIP however is far too narrow in its view of disability. There is for example little point in compelling sufferers to seek advice from anywhere as the only source of help for them in reality is likely to be the medical professionals they will already have been in contact with.

Finally; there is a danger within the consultation document, hidden but not entirely concealed that in introducing the PIP the government are doing exactly what they claim to be trying avoid namely placing barriers in the way of some disabled people achieving a moderate standard of life and stigmatising some disabled people who do not fall so easily into the paradigm of disability the DWP has decided it wants to help. Sometimes ‘focusing on the individual’ can become the language of the bully, the focus turns out to be intimidating, unwanted and unnecessary.

Wednesday, January 26, 2011

Someday, somehow, someway...

Goodness life is busy at the moment. It's all great and very exciting and I feel moaning about it makes me sound like a right twat. But, this is my blog and I'll moan if I want to. And also to be fair, I am a right twat. So consider yourself officially warned; moaning ahead.

Alongside the excitement of meetings with the leader of Wirral Council, articles in or featured by The Guardian, the huge success of One Month Before Heartbreak and the BendyVan I can't shake a dual sense of fear and frustration. Fear because what I'm doing is very visible and could lead to accusations of benefit scrounging from those subscribing to the Nadine Dorries school of social welfare, and frustration because work that pays is oh so very close, so close I can smell it, but can't reach it to taste it.

Yesterday I went to get the final adjustments made to BendyVan so I can use BendyBus independently. It's a massive improvement on the mobility situation I previously had so again I feel like an ungrateful scrounging twat to moan. While I was at the mobility place I got to try out the type of wheelchair I've been dreaming about for months - a power assisted chair. Just before christmas I finally caved to the NHS wheelchair services and agreed to be assessed for a fulltime power chair. Actually I only agreed because Roland promised he'd get me a shed and put the wheelchair in it so I didn't have to fall over it in my flat, but that's beside the point. My flat is beautifully compact and well arranged so it's only ever a few steps to anywhere meaning I'd find it much harder to use a powerchair in here as the dislocations from transferring all the time will do more harm than the staggering dislocations. But, as I've been whinging about for years, the NHS regulations for the provision of powerchairs state that only someone who needs to use a chair full time indoors will be considered for one which goes outdoors, and only after using a chair fulltime indoors for a minimum of six months. What you're supposed to do about going to work or in any way having a life during that six months I've no idea and don't even start me on the waiting times. Given that powerchairs are only technically issued to people completely immobile in their own homes it seems a bit bizarre to have waiting lists of more than a week or so. I don't strictly fit into that criteria but if I did it would mean remaining in hospital or requiring a vastly more expensive care package from the local authority while I waited for the powerchair which costs less than both those things. I did say don't start me! 

So we all get the picture. I don't want an indoor powerchair, don't need an indoor powerchair and don't see why I should have to further limit my mobility just to comply with an NHS rule. However, I do need an outdoor powerchair of some description. Deathwalks are all well and good but it's not a practical form of getting around and my ability to dislocate any joint without even drawing breath means a traditional manual chair is out of the question. Without a suitable wheelchair that possibility of paid work remains an impossible dream, one of the biggest problems I had when I was working was that just going back and forth to the toilet at work was too much walking. Anyway, back to the point which was that I finally got to try out a power assisted chair and oh my, it was lovely. I'd sleep with it if I could. Or the bloke who was demonstrating it for me, but if push came to shove the chair would win. Sorry sexy wheelchair man. 

The big flaw in my dream of making love to power assisted wheels on a regular basis is the cost. Even going with the less expensive version, to get the wheels and a 'not amazing but decent' wheelchair frame is going to cost in the region of £4000. My mobility allowance is already committed to motability so I can't use that and the NHS won't pay for this type of chair. If I was in work I could apply to Access to Work for funding (before it's all cut) but I'm not in work and realistically even if I found a job I could do, with an employer willing to take a chance on someone with a horrendous sickness record, no prospect of improving that and likelihood to be floating round Jupiter somewhere on a morphine cloud most days, to then have to say please wait for me to start the job until Access to Work have assessed me, gone away, made a decision then ordered the wheelchair and it's turned up isn't likely to encourage a job offer. Access to Work were so slow supplying the equipment when I last worked that I'd had to leave through being too sick to work before half of it turned up. 

Assuming I could find some way such as charitable fundin around the wheelchair dilemma there are other practical barriers to work. For example today, even though I've got a blinging new BendyVan, BendyBus and BendyHoist I can't use any of it as I don't have enough spoons to control such equipment safely. I don't qualify for local authority care as my needs are classed as 'moderate' a category the majority of local authorities no longer provide support to. I need help with all the basics, washing, dressing, getting around, making food, reducing dislocations and not choking to death being high up the list but those needs are not sufficient for a care package. That's fair enough, times are hard, a line has to be drawn somewhere and although I need help with all those activities to stop me dislocating, falling, increasing pain and overall disability unlike many people I can actually do those activities in my own special 'life on the edge' way. 

But I can't do all those things and work. It's one or the other. Times are hard, further cuts have to be made and we all have to tighten our belts. But whatever incentives are put into place, whatever benefits are cut back, no matter how difficult it is to claim, unless these other obstacles change, those sick and disabled people like me who could do some work, who want to do some work will continue being prevented from doing so because these kinds of barriers are insurmountable.


Monday, January 24, 2011

National Day Of Protest

 Guest post by Sue Marsh

Today is a big day for the sick and disabled.

It is the second National Day of Protest against the cuts sick and disabled people now face.

The emphasis is on ATOS Origin, the company responsible for the astonishingly unsuitable medical testing of disability and sickness benefits. At their headquarters in London, Triton Square, and at offices in Edinburgh, Leeds, Tyneside and Burnley, sick, disabled and able-bodied protesters will raise awareness about exactly why the system was not fit for purpose before the Conservative-led coalition ever came to power and simply cannot take any more strain. ATOS uses "medical professionals" to assess whether someone is sick enough or disabled enough to receive state support, but they aren't doctors or nurses. They are paid on results, incentivised to find us miraculously fit for work. The assessments are demeaning and frightening too, and sick and disabled people find them so distressing that some are even forced to consider taking their own lives.

Perhaps David Cameron and George Osborne will be more concerned about the protests planned in Gloucestershire or Hastings or Islington. When Sussex and the Shires stand with Glasgow and Birmingham, the public start to realise that something must really be wrong. Hastings plan to lay a trail of red drops, all the way to London and the breadth of the protests show that this isn't a minority problem - it's affecting millions of people from all backgrounds, all colours and all creeds in every town and village of the UK.

As with One Month Before Heartbreak The internet will be awash with bloggers and linkers and tweeters and Facebookers telling the world their messages, so do please join in even if you just send this article to three friends - you will be making an enormous difference to how these cuts are perceived and getting the protests in front of a wider audience.

If you need a little inspiration, then please watch this on YouTube :

 http://www.youtube.com/watch?v=lKx3MUqzCcQ "Danny's Speech, Brassed Off, 1996"

If you watch nothing else today, then click on the link above - just a moment away from the kitten that can count or the bloke who can put his legs up his nose. You see, we've been here before. We don't have the luxury of saying, "Oh well, they'll be fine, they'll get through, we all just need to tighten our belts" because sick and disabled people often can't get through. They can't get out to protest and they wouldn't have the energy even if they did. If the miners were broken men in the 80s, then imagine how those who can't physically fight will be affected as they are targeted in the same way in 2011?

For those who can get to a protest today, thank you. For every person there today, there are 10, 50, maybe a thousand people at home, willing you on and manning the keyboards. If the recently departed Pete Postlethwaite from the tremendous clip above is watching, then I think he would be willing you on too.


**If you want to read testimonials from the sick and disabled and learn more about why ATOS and politicians are making a dreadful mistake over ESA and DLA, please do take a few minutes to read some of their powerful stories by clicking on the One Month Before Heartbreak link.

Monday, January 17, 2011

Submission On DLA Reform - Second Draft

 By Rhydian Fon James 

There's less than a month left to run for submissions to the DWP's consultation on DLA reform. The first draft of The Broken of Britain's submission was posted on this forum a few weeks ago. The response has been incredible, with over 100 replies to my call for evidence and ideas. I have compiled this into a second draft which is posted on our forum. I have tried my best to reflect all your views in the document. Even if you were not quoted directly, your evidence did contribute fundamentally and I thank you sincerely. I now need you tell me how I've done, and to criticize it thoroughly.

This second draft of The Broken of Britain's submission to the Public Consultation on DLA reform still requires your input. Being an user-led group, we are interested in everything you have to say, even if you have never been on our blog or forum before. Read what we've written, take bits out, put new bits in, tell us what you like and don't like, and tell us if you disagree with us - we just want to make sure that we're accurately putting your views across.

On testimonies, we still need:

• A paragraph long testimony from DLA claimants who are enabled to work because of DLA
• A paragraph from a claimant who is chronically ill and will not ‘get better’ about why re-testing every few years is a waste of their time
• A paragraph about why you think DLA is fit for purpose
• A paragraph explaining why three rates of Care component is easier to understand than two (i.e. if you have medium care needs, how do you choose?)
• Why renaming the benefit PIP will not change your life
• A paragraph about the barriers to life that you face because of disability or illness?
• A paragraph on ‘[things] about DLA that should stay the same’.
• A paragraph on the main extra costs you face due to disability or illness.
• A paragraph about what would happen to you if you went down from Middle to Lower rate of Care (losing up to £29.85 a week).
• A paragraph about the broad range of specific activities that you consider essential to your life.
• A paragraph on how DWP can appropriately take account of variable and fluctuating conditions

Please help us to submit a document worthy of your support!

Friday, January 14, 2011

Another Little Piece Of My Heart

 When I first read this personal testimony by an anonymous user of the carerwatch forums it broke my heart. The honesty and bravery of this person in coming forward to explain that they simply cannot cope with the repeated benefit reassesments disabled people are being forced through, and so will end their life when that time comes should move not just every Briton but people around the world. So here you have it, a little piece of my heart and a little piece of the author's, broken by the actions of both Coalition government and the New Labour government who preceeded them.

Today is January 14th, the start of One Month Before Heartbreak. A month from now on Valentine's Day the flawed DLA consultation ends. Please support us and help ensure that disabled people's hearts are not broken and our lives not lost. You can help by signing the petition, by sharing these blogs on facebook, twitter and anywhere around the internet. Use our template letters to write to your MP,  to Maria Miller the very not disabled minister for disabled people, contact your local or national newspapers or TV stations and demand to know why they are not giving adequate coverage to the cuts to disability benefits. But most of all, listen to the words written, spoken, sung or shouted by disabled people and carers and ask yourself if this is really the Britain you want to live in.




"Alone we whisper. Together we shout"

Thursday, January 13, 2011

Transcript for 'What is Disability Living Allowance' video

Text at the beginning reads: "What is Disability Living Allowance (DLA) and who gets it?"

Disability Living Allowance or DLA is a benefit paid to eligible disabled people.  It's a cash benefit and it's not means tested and it's not taxable.  And the reason that it's not means tested and it's not taxed is because it's a recognition that the costs of disability are fixed.  And that whereas you can economise and chose to shop differently or do without to make ends meet when it comes to the costs of disability there is no alternative. 

Disability Living Allowance is paid to people under 65 who need help with their personal care or supervision or help with getting around.  It's paid in two components.  The care component and the mobility component.  The care component is paid in three rates.  It's lower, middle and higher rate and it's for help or supervision with personal care needs.  Now that means things, basic things, like to qualify for lower rate care you have to be unable to prepare a main meal for yourself.  Not a ready meal that goes in the microwave but food that goes on the grill or on the hob or in the oven.  So you might qualify for that if for example you have very severe arthritis in your hands or your feet and you can't stand to cook or you can't safely transfer a pan or chop anything up. 

Middle rate care is paid for people who need more substantial help either during the day or during the night.  It might be paid if you need supervision to make sure that you're not putting yourself or other people in danger for example if you have epilepsy and you don't know when you're seizures might occur.  You need someone around to ensure your safety at all times.  If you have perhaps very severe behavioural or learning problems you might somebody with your during the day time to ensure that you're kept safe. 

For the higher rate of the care component you must need help both during the day and the night  and that help must be substantial.  So you would need help for example going to and from the toilet and help perhaps getting off the toilet.  You might need help to turn over in bed at night.  Or if you have breathing difficulties somebody there to keep an eye on you. 

It is only paid to those with much more severe disabilities.  For example if you have a hip replacement and you're fully recovered in six months you wouldn't qualify for disability living allowance.  But you would if your hip replacement failed and it left you permanently disabled by it. 

The mobility component is paid at two rates, the lower and the higher rate.  The lower rate is for people who need somebody with them to ensure their safety or to supervise them when they're outdoors.  That might be because they have learning disabilities or challenging behaviour.  It may be that they've had an acquired brain injury and they forget their way home all the time. 

The higher rate of the mobility component is much more difficult to get.  And for that you must be either completely unable to walk or considered to be virtually unable to walk by the reason of your physical disabilities.  The care component and the mobility component are paid either seperately or together depending on how the person qualifies. 

The mobility component.  The higher rate component gives people access to the motability scheme.  They can either contract hire or purchase a vehicle of their choice through the scheme.  So the money goes straight back into the economy.  For some disabled people that will mean purchasing a motability vehicle.  But for others it's used to purchase a power wheelchair or scooter.  Because those tend to be very expensive and although the NHS provides electric wheelchairs its only if you need to use a wheelchair full time indoors.  And they will only be provided with that wheelchair after using a wheelchair indoors for a minimum of 6 months.  Now it's obvious to see that a lot of people will fall outside those criteria and won't be eligible for an NHS wheelchair but they might be eligible but they might be eligible for the higher rate mobility component of Disability Living Allowance and so able to use the motability scheme. 

Text at end:  What is Disability Living Allowance (DLA) and who gets it was produced by Kaliya Franklin of The Broken of Britain.

Further information about DLA is available from DirectGov

Blogs about DLA are collated here


Transcript very kindly provided by Emma 

Get Out Of Your Comfort Zone - Disability Living Allowance Cuts Are Relevant To All

The Guardian have published my first piece as part of their Joe Public blog. You can read it here 

Please comment under the original piece as the more comments the main articles attract the greater the likelihood that the mainstream media will run more articles on the subject. 

Wednesday, January 12, 2011

More One Month Before Heartbreak Details

 A guest post from Emma, the organiser of One Month Before Heartbreak
 
With just a few days to go before One Month Before Heartbreak I’m sure everyone wants to know what will happen on the day.  I know I do and I’m running it!

This is a work in progress so please bear with me/us.

There will be a master links list on The Broken of Britain Blog.  So please let us know where you’re post is so we can include it.  A brief idea of what it’s about is also useful (just topic not details).  You can do this in the comments on the blog or on twitter.

We also have a One Month Before Heartbreak blog where we hope to cross post as many submissions as possible.  If you are happy for us to cross post your submission please let us know.

Please try to comment on some of the things people post.  I would love if everyone who takes part could comment on at least one other post.  Blog comments rock and can be especially useful in a situation like this where people may be posting personal things.  It takes a lot of guts, please respect that.

If you see something you people like make sure to tell others about it.  Blog it, Facebook it, tweet it, e-mail us and let us know.  Shout it from the rooftops, even!  We want to get the word out about what the benefit cuts mean to us.  Share the details of the link list and our blog.

Equally, I hope that there will be several “highlights” posts from different bloggers after the event as a kind of round up.  If you do one I want to know about it!  Or if you have any ideas about One Month Before Heartbreak, let us know.

On Twitter? Use the hashtag #ombh in One Month Before Heartbreak tweets.  Or the Broken of Britain hashtag #TBofB.   #UKCuts and #disability are also useful hashtags if you can fit them in.

Consider changing your profile picture on Facebook, twitter or other social networking sites to the One Month Before Heartbreak logo for the 3 days of the event.  And posting the link to explain why.

We want to make as many people as possible aware of One Month Before Heartbreak.  E-mail your MP and tell them about us.  A template letter will be available from Sunday for people to use.

The most important thing I think for everyone involved is to enjoy it and stay safe.  No one is under any pressure to contribute on each of the days, or to take part at all.  Please don’t feel under any pressure to do more than you are able or comfortable doing.

And finally, a really really massive thank you to everyone who has helped to raise awareness and get the word out there so far.  I’m absolutely blown away by how big this is shaping up to be – and I couldn’t have done it without you all!

Emma
 

Tuesday, January 11, 2011

Welfare Cheats - Part 2

 A guest post by Paul, originally posted here

In my earlier “rant”, I attempted to put my perspective – as a previous practitioner – on the recent history of welfare benefit changes, and the misconceptions that are associated with the process. I also alluded to overly simplistic concepts of “disability”.

First, let me ask “What is a Benefit, or Welfare, Cheat?” – the simple answer, I suppose, is someone who claims money from the system that they are not entitled to receive. Is it ever as simple as that? – answer; “Yes”. In an extremely small number of cases (when compared to the total amount paid) some criminals (for this is what they are) make knowingly, fraudulent claims – sometimes using false names, false addresses, stolen NINo’s, and invented ailments and/or illnesses – sometimes in their own name but with dishonest intent.

Allow me to be very clear about these people. It is wrong; it is a criminal act; it should be punished. This is not a blog about punishment and the Justice system, so that is where I will leave it.

However, the terminology is loosely used to cover much more than those specific instances. It is sprayed around, with the precision of an agricultural muck spreader, by ill-informed, opportunistic people – usually politicians, and across the partisan divide – to justify the latest “cure-all” for what is suggested as a system out of control. I take issue with much of that.

I am constantly being told that this country – the UK – is the fourth or fifth richest in the world. Surely a measure of a nations’ success is how it treats and supports its own population? Unfortunately, many politicians seem to think that the term “population” means those who actively participate in elections and therefore have a vote I am interested in securing. Many of the poorest, the physically or mentally ill and/or disabled do not vote; they do not feel involved. Result: they are ignored.

I make no claim to be an economist. One of the few things I remember from my Economics Teacher was him saying that, “If you laid all the worlds economists end to end they probably would fail to reach a conclusion” – in short, it is a lot of guess-work and not a precise science. Bit like Politics then. . .  However, I am informed that the current deficit was largely brought about by urgent bail outs of the Financial Institutions, who had speculated and failed. Again, in short, “we” are paying the man who popped into the bookies, backed the wrong horse, lost the rent money and then claimed it was due to forces beyond his control.

As I advised in a previous rant; I was, for a number of years, a Welfare Rights specialist – in Local Government, in the “not-for-profit sector” and with charitable bodies. I openly admit that the system was imperfect, was complicated and suffered from a small degree of abuse. I also assert that ANY system will always be subject to abuse. Crime doesn’t go away just because Parliament legislates against it – even parliament itself has seen “criminals” within their own ranks abuse their own systems of benefits . . .
I had the good fortune to represent and assist a substantial number of decent, law-abiding, but also seriously ill, disabled and vulnerable people in my 20+ years in that field. I have no doubts, whatsoever, that I probably also represented a tiny number of cheats too – never knowingly, but it is a statistical inevitability. How, in all fairness, can I – or anyone else – guarantee that the degree of pain or discomfort suffered is less than claimed? Assessing a benefit claim is, to a degree, an imprecise science – a bit like politics and economics.

Theoretically, the receipt of any money not declared whilst in receipt of a means-tested benefit is a form of fraud. Yes, there are certain disregards, there was therapeutic earnings allowances, etc., etc. (I want to minimise the technical stuff, because that is part of the problem of the debate) but, in essence, if you did something that incurred a reward or received cash, you are supposed to declare it.  Allow me to tell you a story of a former client, now deceased sadly, so I feel no breach of his confidentiality – but he will remain nameless:

This individual lived in the Glamorgan Valleys. He had worked in the South Wales Mines for a few years prior to the mass closures, never in any skillful capacity, usually in Labouring jobs. By his own admission he was a “bit of a lump”, good at manual effort but none to bright.

His family background was not exceptional, but poverty had featured continuously – he was the eldest of seven, and his biological father had died from a respiratory illness when he was a teenager. His mother had remarried, and the step-father saw him especially, as the eldest and as a large individual, as a threat to the new relationship, so he was kicked out of the family home at age 16.

He was no great shakes at school, so the local pit seemed an obvious place. Whilst he had a job, he was OK. He didn’t do anything earth-shattering, but he paid his taxes and lived an uneventful life. Work, a dingy bed sit and the Miners welfare club, with the occasional trip down the valley for the football.
With unemployment, which effected ’000′s granted, came the sad slide into boredom, petty crime and eventually prosecution and conviction. He didn’t go to prison, even his “criminality” was unimpressive. he was on probation and that is where I first met him.

My initial assessment was of a person of immense sadness. Few friends, fewer “skills”; no family life (he saw little of his mother and siblings) and minimal prospects. In co-operation with the local Dept. of Employment (pre-JobCentre+ days!) we got him on numerous courses, but whilst he attended religiously and conscientiously, we all knew he was not a prime candidate for meaningful employment. At that time, there were graduates unemployed, let alone someone who struggled to read and write and with a criminal record now too.

His sole income was Unemployment Benefit, which was then – and is now in its latest guise – supposed to cover fuel and utility bills, household domestic costs, travel and transport, food, leisure, etc. He also received (or his landlord did) Housing benefit, so he did not have to find the rent for his one room dwelling with shared bathroom. His kitchen was a primer stove; he had no fridge.

His one treat in the week was a trip to the “chippy” on a Friday evening. Amazingly, he was befriended by an Asian family who ran it, and – as they were small in frame and he was very large - he used to willingly volunteer to shift large sacks of potatoes for them when delivered to the shop. Over months, this developed into odd jobs (in truth, largely invented by the family to help him) and eventually, he started peeling spuds occasionally – maybe once or twice a week for an hour or so.

His “reward” for his efforts – usually a very large fish supper, and a couple of quid for a pint. As I said, I personally think this was more an act of kindness by the family than an exploitation of an unemployed person. This went on for a couple of years, until – sadly – the father of the Asian family died from natural causes, and the business ceased.

My “client” never failed to make himself available for work. He attended any and every course suggested, but he was never even offered an interview, let alone a job, until he too – sadly – died at an alarmingly early age in his early 40′s, from a sudden illness.

In the strictest sense of the words “benefit cheat”, he was one. He never declared this small additional income – sometimes £5- a week, at a time when Unemployment Benefit would have been  @ £40. It was as  much a social benefit as a financial one, but – yes – he was a Benefit Cheat.

Think of him and then think of the Murdoch’s, and the Ashcroft’s, and the plethora of big business who avoid their tax liability and ask yourself which is worse. I know who I think is.

Monday, January 10, 2011

Welfare Cheats - Heard It All Before - Part 1

 A guest post by Paul originally posted here

I wonder why I get out of bed some Sundays. . . . . . .

Keen to maintain my grip on the world of current affairs, I stagger downstairs and switch on BBC1 at 9am for that doyen of anti-bloggers, Andrew Marr (Andy – I don’t live with me mum, I rarely drink and I haven’t had “spots” in 40 years).

His “guests” today include the Chancellor of the Exchequer, George Osbourne, and the Shadow Chancellor,  who made such a huge impression on me that I’ve forgotten his name already! Used to be a Postman, was in successive Labour Cabinets - you know who I mean! Hasn’t got a black & white cat . . .

Anyway, one of the “initiatives” that BOTH major parties (I say both intentionally – I don’t consider the Lib. Dem’s a separate independent Political party anymore – more an annex to the Tories; maybe a conservatory?) are touting, as a cure to all ills, is that perennial “blame those claiming benefits”. Always an easy target, and frequently popular with the mass media.

Apparently, a billion can be saved if they “clamp down” on those claiming who shouldn’t be; out comes all the usual clich├ęs – living on benefits mustn’t be a lifestyle, work must always be more profitable than staying at home, the taxpayer must be protected, blah blah blah.

Now before I let rip, please allow me to give you some background:

Those of you poor souls who have read earlier rants will now know that I am deaf. However, I am in full-time employment – earning a reasonable salary and paying my FULL share of taxes. Like most on PAYE, I don’t have a lot of control over that! Regardless of that, I believe we all have to share the burden – albeit I question the wisdom sometimes of using my hard-earned money on illegal wars, etc. – but that is a different argument for another time. I am happy to contribute towards the state coffers.

In the last 20 years, I have primarily worked in the field of Welfare Rights. I have been employed at Citizens Advice Bureau’s; at UK Advice (formerly FIAC) outlets; in the “not for profit sector” and – for the last 10 years – in Local Government.
I have worked with the elderly, with the severely disabled – both physically and mentally, with offenders (including Schedule 1 sex offenders, violent and prolific offenders), with the sensory impaired and the mobility restricted; with the deserving poor and – in some people’s estimate – the less deserving poor.
I am arrogant enough then, to believe that my opinion is based on some experience and – therefore – has some worth. I am also NOT a member of any Political Party, and have not been for over ten years.

In twenty years of advocating for those reliant upon state-assistance, I have “endured” both Thatcher’s & Major’s Tories, and Blair & Brown’s New Labour. There is, despite their alleged ideological differences, a certain nasty consistency to the message, and it is now being repeated by the ConDem coalition government and not being challenged by the official opposition.

In twenty years, I have seen successive governments change the name of support for those with limited, or no, ability to work. We’ve had Sickness Benefit, Invalidity and Incapacity benefits, now we have Employment Support Allowance. Each time, the message is that the changes are designed to support those who can’t, and to weed out those who can work.

Rarely are claimants perceived as “individuals”, with differing problems, instead, they are referred to as one homogeneous mass, most – somehow – and to differing degrees, on the fiddle.

In truth, all credible statisticians will tell any and EVERY system will always – no matter how good you make it – have a small number of fraudsters, it is the way of the world. This number, however, is a very small minority – 2 > 3%, never above 5% - err, that means 95% aren’t!

I have seen the unemployed actively encouraged to declare themselves as unfit for work by Benefits Agency staff under pressure to reduce the number of Unemployed for Political masters. In my time in the S. Wales valleys (the Rhondda, Cynon, Merthyr and Rhymni) it was common to for the DSS (as it was then) to “persuade” unemployed Miners that they were clearly unfit to work.

Few people who worked in the coal mines have no medical legacy of the experience, and we had 200,000 unemployed Miners after the mid-80′s (never mind the numbers from the ancillary industries and from Steel, manufacturing, etc.).

Some of you may recall that, at that time, the DSS used to give examples of jobs that the unemployed may want to consider as alternatives. How we chuckled, with a 50-year-old Miner being told he could work as a Cinema usherettes, or as a process worker in hi-tec industries.

First; few cinemas had usherettes anymore, and who wants a hairy-arsed miner coughing up coal dust buggering up your enjoyment of the film; and how many Miners, with hands like a bunch of bananas, can hold a soldering iron and do the fidley work on circuit boards? They were more at home with a pick axe or a shovel.

Regardless, for political expediency at the time, they were directed towards claiming a benefit that reduced the embarrassing unemployment figures at the time. A Minister could then stand up in Parliament and say s/he had reduced unemployment, whilst leaving out the method!
Years later, suddenly the amount of expenditure on  is a concern, and the same people who have been pushed towards these benefits are now branded as cheats. Many, by now, have developed depression from enforced idleness, or have respiratory problems from chain-smoking, or other health concerns from a poor diet due to low levels of income.

Now Politicians say they should look for work. They are not “Sick” but capable of doing some work. . . .  but they don’t say “what” or “where it is”?
This only refers to a relatively small group of claimants, but a group that is often overlooked in the debate. They are equally entitled to consideration.

Next time, I will attempt to focus on perceptions of disability. Not everyone copes, or is capable of managing, the same disability.

Being incapable of work does not mean you are necessarily disabled, and vice versa.
I am disabled – but I am NOT incapable of work.

Everyone is an individual with different needs and abilities to cope.

I wish Politicians would stop thinking that every blind person has the same needs, or that every deaf person is the same, etc.
Paul :-)

Tuesday, January 04, 2011

Announcing One Month Before Heartbreak

Huge thanks to @funkyfairy22 who blogs at Writer in a Wheelchair for organising 'One Month Before Heartbreak'


One Month Before Heartbreak is taking place from 14th – 16th January 2011.  This is a blog swarm (or blog carnival) style event somewhat similar to Blogging Against Disablism Day (BADD).    A Blog swarm is where people come together to post on their own blogs about the same issue and then share the links on a master list.

Drastic cuts have been announced in the UK to help reduce the monetary deficit.  The proposed cuts appear to disproportionately target the more vulnerable members of society, including disabled people.  When the cuts were first announced the government freely admitted that they hadn’t carried out a full analysis of the likely impact on disabled people.

The cuts include:

Removing Higher Rate Mobility Allowance from people in care homes, a move which is likely to make many people prisoners in their own homes (and possibly in their bed in some cases as HRM can also be used for specialist powered wheelchairs).

Changes to the way Disability Living Allowance (DLA) works.  One of the proposed changes is that all existing claimants should undergo a medical to ensure people aren’t receiving it when they aren’t entitled.  A costly and potentially pointless exercise as medical evidence is needed before DLA can be awarded and some claimants go for medicals anyway.  DLA also has one of the lowest fraud rates of all benefits in the UK – I’m not a benefits expert but I have an incurable, lifelong disability – and an indefinite DLA award, I’m probably one of thousands of DLA claimants in similar circumstances.  Sending me for a medical would cost a lot of money and achieve nothing that the forms and medical notes my doctors have provided hasn’t already done.  All in the name of trying to save the government some money.

Another change to DLA that is being considered is changing it to something called PIP (Personal Independence Payment).  With DLA if you have certain conditions your disability is recognised and you get it automatically.  If you are considered terminal there is a fast track system.  PIP as it’s been described appears to have neither of those safeties.  One of the main things which would be looked at with that would be how well you can use aids and equipment.  For example, it’s pretty obvious that a wheelchair user has some mobility problems, if they didn’t they wouldn’t use a chair, after all.  But under PIP rules they could be ruled to have no problems with mobility if they can use their wheelchair independently.

Council funded care has been cut.  The Independent Living Fund is ending which could force more people into care homes..  Access to Work has had greater limits placed on what it can provide which will make it harder for disabled people to find work and potentially may mean some disabled people who are working have to stop.  Free bus passes are being withdrawn making transport more difficult.  We are treated by the government as second class citizens and hate crimes are increasing.

There are other cuts planned.  The 12 Days of Cripmas is a topical take on an old Christmas carol and lists many of them.  Chilling but well worth a watch.

The Broken of Britain is a non party political group which was set up by Bendy Girl to help give disabled people a voice in fighting these cuts.  Many disabled people and our allies have shared their story, e-mailed their MPs or done whatever they can to help out the cause since it was launched.  One Month Before Heartbreak is one of the projects we are doing this year.

As I said above it’s a blog swarm which means  people getting together to all blog on a subject or a theme at a specified time.  The hope is that by all writing at the same time it raises awareness and makes more of an impact.

The consultation that’s currently ongoing about DLA reform ends on 14th February 2011.  Which is Valentines Day, traditionally a day for love but which could severely affect disabled people if DLA reforms aren’t handled correctly.  We need to ensure that our voices are heard.  We’re holding this event a month before the consultation ends in order to raise awareness of the consultation and give people to chance to respond to it if they wish.  Bendy Girl came up with the name One Month Before Heartbreak.

If you want to take part,  write about whatever you want.  Obviously, it should have something to do with disability and it would be great if you could mention this event and Broken of Britain.  You don’t need to write specifically about the DLA consultation and your personal experience.  Those are welcome but this isn’t topic specific.  You can participate on one of the days or on all of them – it’s up to you.

Nor do you need to write.  You can do a video, a recording, write a poem, draw a picture, anything you want!  Sharing links and supporting those blogging is also very helpful

I plan to make space available on my own blog to anyone that doesn’t have somewhere to share and wants it.

You don’t need to be disabled or a carer or come from the UK to take part.  For our cause to be successful we need support from the international disabled community and from the non disabled community worldwide.

The full details of One Month Before Heartbreak (as they stand now) are available here

One Month Before Heartbreak
A Broken of Britain
Blogswarm

14th – 16th January 2011