Thursday, April 28, 2011

The Welfare Reform Bill Committee And Ammendments

 Originally posted here

The Welfare Reform Bill. which includes provision to abolish DLA and to time-limit ESA, is currently at Committee stage of Parliamentary scrutiny, where amendment to the Bill are made most easily. The trouble is that seats on the Committee are assigned according to party strength, so a majority Government can always stop amendments if they want to. Getting amendments through requires outside pressure to convince the Government that the Bill will not pass through Parliament if it is not amended, or that a Government member on the Committee is persuaded to vote with the opposition due to that outside pressure.

Hywel Williams, the MP for Arfon in North Wales, has decided to apply that pressure in the form of two Early Day Motions: 1755 on Time-limiting ESA and 1756 on Abolition of DLA. These EDMs succinctly present the arguments against abolishing DLA and time-limiting ESA. There are a number of excellent MPs on the Welfare Reform Bill Committee, but too few to defeat the Government. The hope is that these EDMs will apply the necessary pressure to get the relevant amendments passed.

Write to your MP by e-mail asking them to support these EDMs:

Dear Member of Parliament,

Two Early Day Motions have been tabled that pertain to provisions made in the Welfare Reform Bill regarding benefits that are related to illness and disability. The EDMs are intended to demonstrate that the House feels strongly on these matters and is pressing the Government for relevant amendments to the Bill before you vote on it.

The EDMs are by no means a comprehensive discussion of all points relating to disability in the Bill, but are intended to bring the most serious flaws to your attention. The EDMs read:

ABOLITION OF DISABILITY LIVING ALLOWANCE

* Session: 2010-11
* Date tabled: 27.04.2011
* Primary sponsor: Williams, Hywel
* Sponsors:

That this House is deeply concerned by the abolition of disability living allowance (DLA) and its replacement with the personal independence payment (PIP) as provided for in the Welfare Reform Bill; believes that the Government is yet to make a convincing case for reform, as noted by academics, campaigners and the Social Security Advisory Committee; notes that, whilst there may be a case for objective evidence-gathering, the Government's plans for a face-to-face assessment will disadvantage some claimants and will mean that specialist evidence is not given due priority; further believes that the Government is misguided in its claim that PIP will be better targeted than DLA as the reforms involve a simplification of the benefit rates of payment which reduces the ability to personalise payment according to need; further notes that the Government's target of a 20 per cent. reduction in DLA expenditure, as announced in the 2010 Budget, will lead to up to 620,000 disabled people being denied support with no justification of this policy forthcoming; and urges the Government to remove from the bill all provisions relating to DLA reform.

and

TIME-LIMITING EMPLOYMENT AND SUPPORT ALLOWANCE

* Session: 2010-11
* Date tabled: 27.04.2011
* Primary sponsor: Williams, Hywel
* Sponsors:

That this House notes with extreme concern the provisions for time-limiting contribution-related employment and support allowance (ESA) to 12 months included in the Welfare Reform Bill; recognises that ESA claimants will be means-tested for income-related ESA when this period has elapsed, and that an ESA claimant with a spouse or partner working over 24 hours a week will not then be eligible for the benefit; believes that time-limiting ESA isa serious disincentive to work for the partners and carers of ESA claimants, leading to a situation where unemployment is more financially sustainable than work; further believes that time-limiting ESA punishes working families where one member claims ESA; and urges the Government to remove time-limiting ofESA from the bill prior to its Third Reading.

I hope that you will feel able to support these statements.

Yours sincerely,


Journalists, please contact rhydian@thebrokenofbritain.org

"Nothing ever happens. Nothing happens at all. The needle returns to the start of the song and we all sing along like before"



"Nothing ever happens. Nothing happens at all. The needle returns to the start of the song and we all sing along like before"


Sue Marsh - Who Is The Most Deserving?

Rhydian Fon James - Benefit Reform Will Leave Sick And Disabled People Trapped On The Dole 


Wednesday, April 27, 2011

Labour - Wotsit All About?

The local elections are approaching and today I received information from the local Labour party about Laboury stuff and the candidate standing for councillor. The best I can muster on looking at the information is a 'meh', I can't summon up much interest either in Labour or the local elections. And don't start me on AV. Despite having a law degree I can't fathom it further than the "I want wotsits. Oh but if they haven't got any wotsits when you go to the shop can I have some quavers. And if they haven't got any quavers or wotsits can I have some mini cheddars please?" argument.  All cheesy snacks, all tasting different and all a bit, well, 'meh' again. Years of particular lifestyle choices mean I'm pretty much an expert at alternative shopping snack options but I prefer my politics to be a bit more cut and dried. Mind you, as I can't bring myself to vote for any of the candidates, choosing synthetic cheesy snacks is probably the most sensible plan to stick with. And frankly, I can't see cheesy snacks making a worse mess than any of the politicians. At least the crumbs would be easier to clear up afterwards.

Chatting to a friend earlier I explained my voting dilemma. I live in a constituency that is traditionally about as true Tory blue as it gets. When Labour won their landslide victory in 1997, even Wirral West ended up with a Labour MP, much to most of our surprises. Whilst we're not quite in the 'elect a slug if it wears a blue ribbon set' of constituencies we're not that far from it (1997-2010 being noteworthy exceptions) and there's certainly no point chucking a vote at the Greens or Lib Dems. I can't see AV making any difference to that situation - it's a straight Conservative/Labour fight here and will remain so even if we all get to stand in voting booths going "I don't want that one, I want that one, no that one"

I have voted Labour all my life. I had a huge dilemma when last years general election came around because I didn't want to vote Labour after their introduction of Employment Support Allowance led to the persecution of sick and disabled people, with even supposed left wingers such as Diane Abbott having praised the very un left wingers such as James Purnell for his desire to reintroduce the politics of the workhouse to welfare. Had we had a different Conservative candidate standing in the general election I possibly would have voted Conservative. Our sitting Labour MP had decided to step down, having been an excellent local MP. The candidate put up by the Conservatives is far from an excellent MP, local or otherwise, and whilst I considered voting Conservative there's no way I'd ever vote for that particular candidate. In the end I made my decision based on the fact that although I didn't particularly rate the Labour candidate his wife had spotted medical errors which could have cost me my life in the past and frankly that was good enough for me.

The local elections are a different matter. The local authority has also recently changed from a Labour led to a Conservative led council and has already cut 5 respite care homes which provided specialist elderly mental illness care, ie dementia care to the likes of you and me, and care for people with severe learning disabilities or mental health problems. After a murky history of overcharging severely disabled people and persecuting the whistle blower to try and prevent the details becoming public I'm less than keen on Labour being back in control.

Further complicating the matter is that whatever people think of our current Conservative councillor's politics, it's generally agreed that he cares passionately about the local area and doing the right thing for it. Which is a very underrated passion in today's politics.

I could abstain from voting, but that always strikes me as wrong. So when my friend asked if that meant I'd vote Conservative my gut response was to say that I can't. I just can't.

But I just can't vote Labour either. I can't vote for a party who's welfare policies are causing such fear and misery for disabled people. I can't vote for a party who won't even acknowledge this, who won't 'man up' and admit however well intentioned it may have been that they were wrong on ESA. I can't vote for a party who repeatedly side with the Coalition on welfare reform, who's leader* says nothing on welfare other than that he supports gateway changes to DLA and ignores the increasingly vociferous and terrified pleas sent to his team on a daily basis from disabled people. I can't. I just can't.

But what I can do, is point out to Labour that I'm far from alone in feeling that I just can't vote for them as things currently stand. Blue Labour, Green Labour, Red Labour, Purple Labour - it's all a load of crap as far as I'm concerned. Despite being a bit of a politics geek, I suspect a discussion about the merits of wotsits vs quavers vs mini cheddars would be more productive and interesting to the electorate than what colour Labour want to become and there would at least be faux cheesy snacks to eat at the end of it all.

Which is far more than most sick or disabled people and their carers are going to have if Labour don't get their act together and formulate some decent policies to oppose the current direction of welfare reform.


*even if I'm more likely to make it to Prime Minister than he ever is. 

Monday, April 25, 2011

Extreme Vegetable Chopping - Bendy Style

Entitlement to the lower rate care component of Disability Living Allowance is assessed on the claimants ability to prepare a meal using fresh ingredients and an oven or hob, ie not a microwave ready meal. This video was made on a particularly good day, as on bad days I cause chilligeddon incidents just trying to get a meal prepared for me out of the microwave.



What neither Truffle or I realised is that it took me the best part of 5 minutes to chop up half a cucumber. That seemed entirely normal to both of us, but I assume most people can chop up an entire salad in less than that time...

Thursday, April 21, 2011

Cuts To Disability Benefits - 'The Easiest Bit Of Welfare Reform To Sell'

"The coalition’s assault on what the Conservatives refer to as “broken Britain” is underway. The government has announced for the first time how many of the UK’s 2.6m recipients of disability benefits it estimates will be reclassified as fit-to-work in this parliament. The answer: a cool 500,000 or 23 per cent of the total.

Although this will generate political heat among those affected, it is the easiest bit of welfare reform to sell. Britain’s out-of-work disability benefits have been abused. The last government belatedly recognised this and started to introduce a more rigorous system. But many of the 2.2m people who still claim the old benefit elected to do so because it is more generous than the dole."


This article in yesterday's Financial Times* makes very clear the ethos behind the Coalition government's slash and burn attacks on sickness related benefits, that cuts to disability benefits are perceived as the "easiest bit of welfare reform to sell" . The FT don't distinguish between the different types of sickness related benefits so I assume the figure of 2.2million people claiming what they describe as 'the old benefit' refers to Incapacity Benefit, the predecessor to Employment and Support Allowance brought in by New Labour. It seems equally safe to assume that the 2.6million they refer it is actually the 2.9 million Disability Living Allowance recipients, some 1.25 million of which are adults who claim both DLA and IB. 

The official Department of Work and Pensions fraud rate for Disability Living Allowance makes it very clear that only 0.5% of the total number of claims are fraudulent. That's approximately 14,500 fraudulent claims out of an overall 2.9million.  So, less than 15,000 Disability Living Allowance awards are fraudulent and the coalition are determined to reduce the numbers claiming DLA by half a million. Playing fast and loose with the DWP's own statistics and assuming they're wildly underestimating the problem of fraudulent claims, which seems particularly unlikely, if an overall fraud rate of, say 5%, 10 times that of the official rate were assumed, that would still only be one hundred and forty five thousand fraudulent claims out of a total 2.9 million. Still some three hundred and fity five thousand short of the half a million proposed reduction.

The agenda is clear. To vastly restrict eligibility to DLA, already the most rigorously assessed and difficult to claim benefit of all. 

So much for David Cameron's claim that "Those that can should, and those who can't we will always help. I want to make sure that my government always looks after the elderly, the frail, the poorest in our country." David Cameron, 11th May 2010




Originally posted 17/09/2010

*10 articles available to view per month if  free registration completed

Wednesday, April 20, 2011

The Bendy Bus - A Magical Small Child Magnet

The BendyBus is a magical small child magnet - especially to little boys. They get this look in their eyes, a look that in decades to come will be all grown up and mean something entirely different, but for now is an innocent excitement, beautiful to witness. The cut off point seems to be around 12, when they become all 'cool' and aware, but any younger than that and you can watch them gazing fascinatedly at my mobility scooter, little hands unconsciously outstretched in their desire to touch and understand how it all works. Even the policeman who's feet I nearly ran over yesterday was far too amused by the scooter to be upset. Or demand to know if I had insurance.

Something about the BendyBus breaks down barriers and lets children approach and ask questions. How does it work, how fast will it go, why have you got it, can I have a go please? I always answer their questions, curiosity sated with the answer 'my legs don't work as well as yours' they move on to the far more important stuff about the scooter. Sometimes parents literally drag their children away, their embarrassment and shame palpable as they mutter about it being rude to stare and refuse to meet my eye. That always makes me sad as their children are seeing and accepting difference and disability as completely normal parts of life, and even a way of getting amazing toys they'd really rather like to have. Those kids would grow up into non judgemental adults if given the chance.

I met Max yesterday in the supermarket. A proper little cutie of five or six he was edging towards the scooter in that way kids do when they are enchanted by what they see and can't seem to help themselves get closer. Max didn't have a great deal of speech, he had words but his little sister still in a pushchair was putting together her words into sentences in a way that Max is yet to master. He knew what he liked though, and he LOVED my scooter, little hands reaching out to touch it through the distance as he shuffled closer and closer. 

Max's mum apologised for him bothering me, but when I offered to let him have a go on the scooter her eyes lit up too. I explained he'd have to sit on the seat with me, it's close contact, particularly for a stranger. Max was halfway on the scooter before his mum had said yes, so incredibly focused on the excitement he couldn't look at me. Actually, Max couldn't really look anyone in the eye but his little face shone with joy as he climbed on to the scooter. So did his mum's.

Off we went, Max as good as gold, hands under mine on the handle bars, completely transfixed by the scooter, the speed and the wonder of it all. We went round a few aisles then straight back to mum, who looked even happier than her boy. Max didn't say much, he got off the scooter obediently when told to by his mum but remained utterly transfixed and so, so happy looking.

Later I went to see BendyBabyNiece. She's another scooter fan, getting stopped by the police just seems to have added to the thrill. The hoist is a big draw for BBN. She's allowed to help push the buttons and watch the hoist take the scooter in and out of the car. She also knows exactly where the horn is and how to sneak her little hands under mine and fiddle with the speed dial. It's a big deal. Her only disappointment is that I won't get off the scooter and leave it to her to operate as she believes herself competent to do. Well, she is 2 now. That's all growned up.

These are children who are seeing disability as normal. As a different way of getting around, way more exciting than legs could ever be, of fun and interest and very, very easy to accept. Legs that don't work so well are more than compensated for by having a full sized toy 'car' and attitudes laid down in early childhood are carried through to adulthood.

Oh, and mobility scooters are fun. How could they not be. So disability is fun too. I hope they remember that bit most of all when they grow up.

Tuesday, April 19, 2011

A Stitch In Time Can Sometimes Cost You Nine

 Originally posted June 16th 2010

On Sunday, over lunch, the subject of Disability Living Allowance came up. I know, I know. I need to get out more. But see what happens when I do? In depth discussions about welfare reform. In a Harvester of all places. Which, by the way, did have a disabled toilet. It's just that it was locked so I couldn't take any photos for you. I was all out of 'traipsing around the pub to find a member of staff, to follow to another member of staff, to scratch both their heads about where the key might be' spoons. Must've been the welfare reform debate exhausting me. 

It was lunch with an old friend from university. We both studied law and did reasonably well at mooting back in the day. It obviously made more of an impression on him than it did me as he now teaches law. Mind you, he wasn't the one who got touched up by a senior member of the judiciary. The thing about debating with legal-y types is that you better damn well know your stuff. Otherwise so many holes will be poked in your argument it'll sink without a trace before the starters arrive. 



My friend was curious about Disability Living Allowance. 'Why', he asked, 'in a time of such financial crisis are we paying people just because they are disabled?' 'Surely there's no need for that payment when we have an NHS to provide medical care and local authorities to provide social care?' 



Why indeed? 



Disability Living Allowance is one of the most misunderstood and yet most practical and vital benefits we have in the welfare state. It is NON means tested, so it can be claimed by anyone who meets the required standards for needing assistance with either a care component or a mobility component. 


My legal chum was curious, 'why would we pay rich people this benefit?'* The answer is that we probably don't, in all but a few, rare, cases. Disability is disability, regardless of income level. Whatever one does or doesn't earn, the additional costs arising from disability remain. Had the Cameron's wanted to detail their son's disabilities in the explicit and minute form demanded by the Department of Work and Pensions, Ivan Cameron would have been fully entitled to the highest levels of Disability Living Allowance, his parent's financial wealth has nothing to do with the level of disability he had*. That, and the costs arising from it would be the same whether his parents were on means tested benefits or multi millionaires. In fact, the costs of disability often rise once people are in employment as they require additional care and support to remain in work. 'What if I'm really greedy?' my friend asked 'and I have millions but still want to claim DLA?' I explained that if you meet the qualifying criteria you'd be entitled to DLA regardless of your income, but that if you already have plenty of money you'd be unlikely to want to fill out a form as thick as a novel, giving explicit details about every aspect of your life. How you pee and poop being no exception. 


DLA is one, if not the most difficult benefit to claim as the qualifying criteria are so very strict. For example, to claim the higher rate care component a person must require help for at least an hour during the night, whether that hour is split up into separate periods of help or not. At least an hour a night, for at least 4, probably 5 nights every week. My frequent nightly jaunts to the toilet, dislocating as I go, which often mean falling over, or stumbling face first into a door frame at 4am were not considered enough to qualify for higher rate care. Nor was my airway collapsing sufficient reason for the DWP to think I required someone to watch over me at night.


That all made alot of sense to my friend, so we moved on, as the overall concept of the state paying people money because they are disabled still didn't quite make sense to him on a financial basis. 


To answer that question I had to explain to my friend how the social and health care system in England works. There is an assumption by the wider public that disabled people receive all the support and services they need. That disabled people are provided with a nice little bungalow to live in, paid for by the state, given all the equipment they need by the NHS and endless streams of carer's provided by the local authorities. Occasionally this does actually happen, and not just on the pages of the Daily Mail, but for most disabled people life is a constant battle to receive any support, let alone the Holy Grail of support packages tailored to their needs. 


Local authorities do provide some care, and without a full understanding of the system it's enticing to think that Disability Living Allowance is paying for that care twice. It's only once you fully understand the system that you realise, not only is DLA not paying for that care and support twice over, but in all likelihood it is saving the system a fortune in a similar fashion to the pittance paid in Carer's Allowance. 


The care that local authorities provide is rationed. Again, that sounds good. Until you realise that rationing isn't designed to prevent lazy people exploiting the system. Most local authorities only provide care to those who's needs they define as being 'critical or substantial', and demand payment from the care component of DLA towards the funding. To give an overview of what those categories might mean, my needs are classified by the local authority as moderate, which means I am not eligible for any support. 


So, as someone who can't even sneeze without dislocating a rib I don't receive any support from the local authority, the justification being that I can manage. And, to an extent I can. But I only manage because I receive DLA. The care component of DLA allows me to purchase support, and the mobility component to fund transport costs in whatever way I see fit. I use my DLA for things as diverse as paying someone to provide care, through to the additional heating I need to keep warm, pretty much year round, ready prepared food, physiotherapy or grocery shopping on the internet. At the moment I'm using my DLA to fund the cost of a mobility scooter and the costs of the adaptations needed to allow me to have that mobility scooter at home. Without DLA I would immediately lose my ability to cope by paying for these extras and have no choice but to throw myself on the mercies of the local authority. As would every other disabled person, and as most of us fall into the 'considered to be coping' category that would be an awfully high proportion of disabled people suddenly having to be admitted to hospitals until the local authorities could figure out some way of either providing the support they require or passing off the responsibility to the NHS. The NHS is already vastly overstretched and an influx of the million or so disabled adults suddenly unable to continue coping because their DLA had been removed would cause it to grind to a halt instantly. 



My friend is an extremely astute, self made business man**, who immediately saw the potential consequences and crucially the potential financial impact of removing what could initially appear to be a surplus benefit. His final comment was to ask how people who don't have the benefit of higher education to enable them to understand the complexities of the system cope? 



The deeply distasteful answer is simply; they don't.





*The Camerons did receive non means tested benefits in the form of Direct Payments towards Ivan's care package. This is because, unlike in adult social care, children's care packages are not means tested. David Cameron referred to this support in his 1st speech as PM. The Cameron's also applied for DLA for Ivan (which he was rightfully entitled to)

**And highest rate tax payer.

Monday, April 18, 2011

The Queen And The Soldier


Well, my chilled out mood after such a wonderful weekend has lasted me til precisely 3pm on monday. I've gone from all happy and relaxed to ragingly, impotently furious after going to visit my old carer and her family. G worked for a home care company, which is how I first met her, at the bleakest, darkest time of my life she was a true carer - she loved me better with every wipe of her cloth. G is still a carer, but she's retired from the home care company. Now she cares full time for her beloved husband T.

G & T are a proud couple and rightly so. They've worked hard all their lives, paid tax and national insurance, raised their children who are now all adults working and with families of their own. T served his country for more than 25 years before retiring from the Army and working for another decade or so in the private sector. T has a degenerative neurological condition called cerebellar ataxia which one of the shittiest of all the shitty ways there are to die; it's long, drawn out and the person remains fully aware of what's happening to them to the very end.

Although T does receive DLA, it took a protracted fight to get his lifetime award. But, despite all that service to his country, T does not receive any other support than that provided by G and the family. Having worked as a carer G has seen the best and worst of social care, and would never countenance that happening to T. Past experiences of social services assessments meant the refusal to provide the practical support they really need, like someone to come in for a few hours so she can go out, coupled with the insistence that they should have inappropriate equipment leaving G so traumatised she understandably refuses to take that route.

When last assessed, Social Services were adamant that G & T should approach SSAFA who do a sterling job of providing support to those with previous military service. SSAFA would undoubtedly help out, but T refuses to allow it. SSAFA is a form of charitable support, which he considers to be not for 'the likes of him' whereas support from the local authority is something he has directly paid for and therefore acceptable as it's not charity.

G & T aren't the victims of this round of cuts. Far from it, this situation was happening long before the Coalition government came to power. However, G & T are symbolic of the situation countless families up and down the country find themselves in, trapped between various bureacratic agencies each pushing responsibility onto the other while those in need go without.

As G & T's youngest daughter wisely remarked today, the decision to cut Disability Living Allowance is unconscionable because DLA is already the cheapest way of funding these kind of care needs.

Wonderful Weekends

Times are tough for sick and disabled people. A constant onslaught of welfare 'reforms' combined with frequent media outrage about benefit scroungers and increases in disability hate crime mean that many of us feel we are literally fighting for our lives. This harshening of attitude to state provided support not only depresses and scares us but for many of us, means that we fear being seen doing anything 'nice' lest someone should decide to report us for fraud. On blogs and twitter we've discussed 'disability normal' to try and help the wider public understand we have the same hopes, dreams and desires as everyone else, we just have additional pressures not shared by a still able world. At Broken of Britain we've all pretty much worked ourselves into the ground, not because we're truly fit for work but because we recognise that our backs are against the wall and if we do not win this battle, we will face fighting a far greater war for our very existence. Over the past week or so the core BoB group have been hit hard by the health consequences of our work, one has had increased heart problems, another the first signs of a Crohn's flare, one is still recovering from surgery, another still unsure if they'll be homeless in a few weeks and I'm still getting over the breathing problems from a few weeks back.

The flipside of this 'back against the wall' attitude is that sick and disabled people tend to grab life with both hands (metaphorically, we tend to be a bit crap on grip strength) and on the occasions we're well enough, we LIVE. I've just had the busiest, lovliest, happiest weekend I can remember in years, more years than I care to think about. It was packed, and I'm in horrible pain and exhausted, but the happy memories will keep me going for years to come.

Friday started badly. I opened my inbox to find another email from a person disabled by mental health issues explaining that they had already made one suicide attempt and were planning another once their WCA assessment letter arrived. I sobbed down the phone to a friend in impotence and sadness that a Britain, once so great was putting this kind of pressure on it's own citizens, more so when I heard a journalist contact on twitter had also received a similar message that morning. The rest of the day is a bit of a blur, but the time spent with my neighbour's two year old dripping bubble mixture onto my head was just the medicine I needed to recover from such a sad start to the day. The rest of the day is a bit blank, I remember lots of pain and sleepiness and not the skype conversation I had with a friend - most of which didn't make sense when read back. Perhaps that's why, no matter how hard I try I have no recollection at all of Friday night.

Saturday was a beautiful morning. To chase away the need to vomit I went for a deathwalk, setting off thinking as I was in the best part of the month hormone wise I was looking pretty fine. Until my physio neighbour chased after me to express her horror at how floppy my hips were looking and warn me not to go too far. I made it, without need for rescue, but did need two hours in bed afterwards to recover. My upstairs neighbour had asked me to go wedding dress shopping in the afternoon and I was SO excited and honoured she'd asked me. When we arrived at the wedding dress shop, as so many wedding places seem to be, it was upstairs and of course there wasn't a lift. Fortunately the stairs were low rise, with landings in place every few steps so my neighbour and the hand rails got me up, and my bottom got me down. There's a time and a place to make a fuss about the lack of access, and shopping for the biggest day of someone else's life is most certainly  not it. Several dresses, cups of tea and tear stained tissues later we'd found the perfect dress and headed home for the early tea at the pub we'd planned.

We walked and BendyBus'd along the promenade to the busy pub and enjoyed our meal, particularly the 2 for 1 deal the pub run meaning it only cost about a fiver a head, then walked and scooted back to our local where we sat outside with the dog and even I had a drink. I couldn't finish it because it made me feel sick, which is probably fortunate as even that tiny amount of alcohol produces wildly inappropriate one liners to come out of my mouth before I know what I've said!

We headed home around 9pm and sat in my back yard wrapped in blankets listening to music, talking, smoking and drinking. Somehow a gnome ended up looking like it was butt fucking a plastic cat and the snails were holding a full blown festival which we all found highly amusing. Ok, I did. The others just found my snail festival overexcitment highly amusing. By around midnight we all crawled off to bed, and even though it took me two hours to stop shivering and frequent waking later due to being so cold under the two duvets and hot water bottle I'd piled on my bed it was well worth it.

Pain woke me early and feeling rotten but I was so excited about the prospect of my back yard getting the 'ground force' treatment I tuned it all out and focused on that. We loaded up the BendyVan with my wheelchair and headed off to the supermarket and garden centre to stock up with food and plants, intending to have a BBQ later on. I'm so used to having to do things alone that every time I'm with people who automatically support my disability it comes as a huge shock to me how easy life becomes. If I'd wanted to go to the supermarket alone, even with the mobility scooter it would have taken up the entire day and left me exhausted, but with friends to push me and help out I was able to do it all and still have the energy left to do some planting. My friends did all the hard work gardening, lifting, sweeping and sorting while I potted a few plants. Half way through I dislocated my ankle and wobbled wimpily in the middle of the yard until someone sat me down, helped me take my boot off and hung onto my foot as firmly as they could so I could relocate the ankle. It only took a couple of goes but was quite upsetting for the others.

The garden was transformed within an hour or so and we were exhausted, happy and excited for our BBQ. Which was when we discovered the other neighbour who'd been dispatched to buy BBQ's and meat had got a bit puddled in the supermarket and thought we were buying them. Not deterred by this lack of BBQ or food we combined ingredients from various freezers and kitchens and my upstairs neighbour used my kitchen to make a fantastic meal. We sat in the newly sorted out yard, with candles, the gnome shrine* a beautiful meal and wonderful company.

It might not seem much to you, a weekend spent close to home, a meal in the pub, a drink and time with friends. But for me it was wonderful, exhausting, exhilhirating and oh so very special. So special that even the fear of being reported for benefit fraud because I was actually enjoying myself couldn't spoil it.


*Really, don't ask. Apparently we're getting a Huddersfield Town gnome, but the inappropriate porno gnome show seems to have taken off big time! 

A Note To Disability Sceptics Why We're Fighting - by Sue Marsh 

Friday, April 15, 2011

Robin On The Road Talks DLA

The video made by Robin Hood Tax is now up here. Please share it with everyone you know.

Life Can Change In An Instant

This week I was visited by Robin On The Road - the awareness raising tour from the people behind The Robin Hood Tax. They've posted my blog here and look out for the video to come...

Thursday, April 14, 2011

Documentary about WCA & mental health claimants

We have been contacted by a journalist who is making a documentary about Employment Support Allowance and particularly the flawed Work Capability Assessment in relation to people claiming for mental health reasons.

They are hoping to find people who've either already had their letter to tell them their WCA date or from mental health claimants who are frightened of the assessment. If you would be willing to talk to them please email me on benefitscroungingscum@hotmail.co.uk and I'll put you in contact.

Wednesday, April 13, 2011

Last Day For Submissions To ESA Enquiry

Today is the last day for submitting your evidence/experiences to the ESA enquiry.


-If you have experience of an ATOS Work Capability Assessment
-If you are currently on IB but will soon be assessed for ESA
-If you have experience of the Work Capability Group
-If you are concerned about Time Limiting or any other aspect of the changes, then


Please take a few moments to read the issues outlined in the enquiry below and if you feel one or more have affected you, I urge you to write a short statement. It might be a description of how unsuitable your assessment was, your experiences of ATOS, or how time limiting the benefit could affect your partner's ability to keep working. If you have been through the worry and fear of a tribunal, we need to explain how this fails too, or how hard it is to always be fighting.

Obviously, you can respond to all of the points if you feel you have personal experience to share. Contact details for sending in submissions can be found by clicking on "How to submit Written Evidence" at the bottom of the DWP quote.

However, I have set up a new email address, suey2yblog@hotmail.co.uk to enable anyone who wishes to, to write their feelings and thoughts and contributions without having to make their personal details available on my blog. It is vital that each submission is accompanied by a name address and telephone number to ensure that as many submissions can be made as possible.

You don't need to be a writer or a campaigner - far from it. It doesn't matter what you write or how. No submissions will be censored or altered. I will simply collect them together until the submission date. If you've never been actively involved before, I urge you to think about joining in. This is the best chance we, the public, have to be heard and hopefully, to change the most damaging aspects of ESA.



"Employment and Support Allowance (ESA) replaced incapacity benefits for people making new claims from October 2008. To be eligible for ESA, a person must usually undergo a Work Capability Assessment (WCA).
The introduction of ESA in 2008 was initially limited to new claimants. Existing incapacity benefit claimants are now being reassessed under the Work Capability Assessment. The process will last until 2014 with around 1.5 million people being reassessed.
Reassessment commenced on 11 October 2010 with a trial in Aberdeen and Burnley.  At the end of February, Jobcentre Plus began a limited introductory phase, and will move to full national reassessment of incapacity benefit claimants from April 2011.
In particular, the Inquiry will focus on the following issues:
  • The Department’s communications to customers going through the assessment and whether the information, guidance and advice provided by the Department and Jobcentre Plus is effective in supporting customers through the process.
  • The Work Capability Assessment including: the assessment criteria; the service provided by Atos staff; the suitability of assessment centres; and customers’ overall experience of the process.
  • The decision-making process and how it could be improved to ensure that customers are confident that the outcome of their assessment is a fair and transparent reflection of their capacity for work. 
  • The appeals process, including the time taken for the appeals process to be completed; and whether customers who decide to appeal the outcome of their assessment have all the necessary guidance, information and advice to support them through the process.
  • The outcome of the migration process and the different paths taken by the various client groups: those moved to Jobseeker’s Allowance, including the support provided to find work and theimpact of the labour market on employment prospects; those found fit for work who may be entitled to no further benefits; those placed in the Work Related Activity Group of the ESA, including the likely impact of the Department’s decision to time-limit contribution-based ESA to a year; and those placed in the Support Group.
  • The time-scale for the national roll-out for the migration process, including the Department’s capacity to introduce changes identified as necessary in the Aberdeen and Burnley trials.
Short submissions (no more than 3,000 words) are invited from interested organisations and individuals.
The deadline for submissions is 14 April 2011."
That last line is the link that gives details on how the submission should be presented. (just click on it) If you can follow the suggestions, please do, but if they daunt you, don't be put off, just send your story with name, address and telephone number to suey2yblog@hotmail.co.uk and I will attempt to put as many as I can in the format the inquiry requests. (always asking for your approval before submission.)

Most of all though, know that this is great news. It is an enormous achievement that this blog and hundreds of other blogs and campaign groups and charities have highlighted the faults of ESA so effectively that we now have a chance to make our views heard officially.

Please pass this on to anyone you know who might want to participate, and again, share as widely as possible to make sure that as many people are included in this process as possible. 


Once again, the email for submitting via this blog is suey2yblog@hotmail.co.uk

Tuesday, April 12, 2011

Disabled People And The 26th Of March - Report By John Pring


TUC protest: Disabled people send powerful messages to government

Disabled people who took part in the huge TUC protest march and rally in London have sent a series of powerful messages to the government about the impact of the cuts on their lives.
They told Disability News Service during Saturday’s event why they had joined the hundreds of thousands of other protesters who took part in the March for the Alternative.

Linda Burnip, a founder of Disabled People Against Cuts, which played a big role in supporting disabled people to take part, said: “I am hoping to send a really powerful message to all politicians, including Ed Miliband [the Labour leader], that we are not going to be messed around with.”

Stuart Bracking, a member of the Unison union, said he was demonstrating to protect services and to protest about cuts to disability benefits.
He said: “I have been on demonstrations over the last 20 years and the visibility of disabled people is much higher on this demonstration than it has been over the last 20 years.”

Doug Paulley, who lives in a residential home, said he believed disabled people were being “unfairly punished” for “something that wasn’t our fault”.
He said the proposal to stop paying the mobility component of disability living allowance (DLA) to people in residential care was “really sick”.
And he appealed to the government to “stop making up stuff about disabled people and tax the bankers, not the people who can afford it least”. 

Deborah Sowerby said she felt as if she was “among friends” on the protest, and added: “There has not been enough of this coming together. There are a lot of us and we are not going anywhere and that is why we are here today.” 

Adrian Whyatt, from the London Autistic Rights Movement, said: “We need to try and get them to see these cuts are not working.”
He said disabled people were being “targeted” by the government, and pointed to the mobility component decision, and problems with the notorious work capability assessment. 

Sian Vasey, director of Ealing Centre for Independent Living, said she was worried about cuts to social services, and added: “If they dismantle everything they are only going to have to rebuild it again.”
Marian O’Brien, coordinator of Ealing User Involvement Service, said her message to the government was to not privatise services. 

She said: “We want to keep our welfare state. The ‘big society’ will not happen because they are cutting back on funding. They are dismantling the welfare state bit by bit.”

Anne Pridmore, chair of Being the Boss, which supports disabled people who employ personal assistants, said she believed the cuts had put disabled people’s rights back 20 years, while the government’s reforms were about “trying to get big businesses rich”.
She said: “I am so angry. In three years’ time it looks like I will end up in an old people’s home. Without support, people will not be able to get up in the morning. If disabled people have not got the support packages they will not be able to go to work anymore.”

Her colleague Jan Turner said: “I am here because of the service cuts, because of all of the money they are spending on the census and the Afghan war and the Gaddafi war and all the tax evasion.
“I think they are doing unnecessary cuts to people who are vulnerable. I am doing it for other people who can’t protest.”
Sheila Blair, also from Being the Boss, said: “I volunteer with a lot of organisations. What I don’t want is for a lot of organisations like the ones I volunteer for to get to a position where they have no staff and everything is done by volunteers in the name of the ‘big society’, which is a lot of shit. I just get very angry about it all.”

Frank Lerner, a retired head teacher, said: “Everything I have ever worked for in my life is being destroyed. I just think that this government is out to destroy the infrastructure of our society for their own easy ends.
“The cuts are nothing to do with what is needed, they are to do with what they want to achieve. It is dogma rather than necessity.”

Raymond Johnson, from People First (Self Advocacy), said he believed the banks should be forced to make cuts rather than disabled people.
He said: “Obviously there are lots of people here against the stupid cutbacks. Saying ‘we are all in this together’, I don’t think so. There are a hell of a lot of people here.” 

Sandy Marks said she was protesting “because I can and because when they have finished with us I will not be able to”. 

Sarah Fisher, from Knutsford, Cheshire, said: “The banks got us into this mess but it is the ones who are least able to cope with cuts who are going to be paying for it. There is no fairness in what is happening.”
She added: “I am hoping that this will help. I think if nothing else it will give a wake-up call to the government in that not everybody is behind this ‘we are all in this together’.”

Lisa Egan, co-founder of the Where’s the Benefit? blog, said she was there “to protest against the cuts, because I need the welfare state and the NHS in order not to die”.  

Louise Hickman, from Hackney, said she had joined the protest because of the “vulnerability of support for disabled people in further education”.

Olcay Lee said: “We are here to stop the cuts if we can.”

Her husband, Andrew, director of People First (Self Advocacy), said: “Disabled people didn’t actively put us in this mess.
“We are very concerned that cutting services for disabled people, there is no logic to where the cuts are actually being made.
“Yes, we need to get the country into a better shape but disabled people need the right support. Without the right support there will be more money [needed] to clear up the mess.”

Andrew Hart said he was at the protest as a disabled trade union member, the trustee of a voluntary organisation that was suffering from the cuts, and the father of a son with autism, who was facing the loss of education maintenance allowance (EMA) as he prepared to start sixth form college.   

Riven Vincent, from Bristol, the disabled mother who caused a media storm after saying she had asked her council to take her disabled child into care because of a lack of respite, called on the government to rethink its DLA reforms, and its plans to remove the mobility component from those in residential care.
She said: “I am marching because of the cuts that will affect disabled people, including my daughter Celyn (Williams).
“I have met David Cameron and he promised none of his cuts would affect disabled people and he has lied.”

Dean Thomas, from Nottingham, said he was on the march “because I can be here. For other people who can’t be here. The cutbacks are focused on the most vulnerable people in society. They are completely wrong.”

John, who asked not to give his surname, said he had joined the march because services were under threat.
He was scornful of David Cameron’s “big society”, and said: “The expectation that there will be all these volunteers to do the jobs is a bit false. There are already volunteers in society. How many more are there going to be?” 

Margie Hill, from Knowsley, Merseyside, a member of the Unison union who works in local government, said she believed the government wanted to target disabled people, and was going to “try to pick them off, get rid of them” and “scupper our benefits”, while any new jobs would go to non-disabled people.
Catherine Callaghan, also from Knowsley, has been made redundant from her job with Greater Merseyside Connexions Partnership, which she said had cut more than 40 per cent of its workforce.
She had worked there with disabled young people, and said the loss of EMA meant young people would be “dropping out in their droves from education, hanging round the streets and there will not be people like us to interact with them to get them back on track”.

Jonathan Bartley, who is not disabled but cornered David Cameron in front of TV cameras before last year’s general election about his battle to secure a mainstream school place for his disabled son, Samuel, said his wife had lost her job at Sure Start.
He added: “Clearly it is affecting our family, our whole community, and it is very important that the government understands that this is not what the country voted for.
“What seems to be happening is the poorest and the most vulnerable are paying the price for the financial crisis they didn’t get us into.”   

31 March 2011


TUC protest: Disabled people play part in march and rally
Disabled people came from all over the UK to play their part in a mass protest organised by the TUC against the government’s spending cuts.
Many were there to protest against cuts to disability benefits and other aspects of the government’s welfare reforms, while others were angry about the impact on inclusive education, and cuts to local services and support.

Leading figures in the disability movement joined representatives of the new disabled people’s anti-cuts movement, individual disabled people, trade union members and carers.
The many disabled people’s organisations represented included Disabled People Against Cuts (DPAC), Black Triangle, People First (Self Advocacy), Disability History Month and the London Autistic Rights Movement.

Estimates for the number of protesters who took part in the march from London’s Embankment to Hyde Park ranged from 250,000 to 500,000. Although it is impossible to guess how many of them were disabled, scores of people joined a “safe” area for disabled people near the front of the march.

Tara Flood, director of the Alliance for Inclusive Education, said she was on the march to “tell the government that we are not going to accept the cuts that they are imposing on us or the return to the bad old days of segregation”.
She added: “People are not going to just sit back and let our services be destroyed and let disabled people’s lives be damaged beyond repair.”

Youcef Bey-Zekkoub, who was representing the accessible transport charity Transport for All, said he was on the march to show that accessible transport “is really important for disabled people like myself. My message to the government is they have to think again about these cuts. Especially about access for disabled people.”

The writer and performer Penny Pepper said she had taken part “because we have to be counted against the savage attacks against disabled people’s lives”. 
She said: “We are seen as easy to target. We have to show that we are not easy and that we have a voice.”

Peter Purton, the TUC’s disability policy officer, said disabled people were the “worst affected” by the cuts, including disability benefit reforms, the loss of public sector jobs, and cuts to legal aid. He said he was “delighted” that so many disability groups had taken part in the protest. 

The Labour MP Dame Anne Begg said she had taken part in the protest to show “solidarity” and that “there is an alternative and we know that the priorities of this government are wrong”.
She said: “It seems to me that those who have least seem to be losing the most and that is simply not fair. Disabled people in particular feel very strongly because they seem to be in the forefront of many of the cuts.”

There were criticisms of the TUC’s access arrangements, with some complaining that they had had to fight through crowds to reach the allocated “safe space” for disabled people near the front of the march.
The TUC had also said that the disabled people at the front would be able to set their own pace, but they were soon swamped and separated from each other by thousands of marchers who overtook them soon after the march began.

Kirsten Hearn, chair of Inclusion London and a member of the Metropolitan Police Authority, blogged after the event that the experience of having to fight her way to the front had been “very frightening” and that she had been “put in danger”.
Linda Burnip, one of DPAC’s founders, said the access arrangements had been “total chaos” and had certainly put disabled people at risk.
A TUC spokeswoman said it had made “extensive efforts” to make the event as accessible as possible, but was now carrying out an assessment of the access arrangements.
She said: “We would not pretend that everything was perfect or could not be improved, but we are pretty sure that this was the most accessible demonstration of its size ever organised in London.”
She added: “Some reported issues were simply due to the greater than expected numbers.”

There was some disappointment that the Labour leader Ed Miliband failed to mention disabled people in his speech in Hyde Park, even though he mentioned maternity services, Sure Start centres, small business owners, teachers, students, “families struggling to get by”, libraries, Citizens Advice Bureaux, community centres and the NHS.
His spokeswoman said later that other groups had also not been mentioned, and that Miliband had raised the government’s plans to remove the mobility component of disability living allowance from people in residential care at that week’s prime minister’s questions.
She said: “It is an issue he cares about and it is an issue the Labour Party cares about. He is actually aware of the deep concerns and anxieties that disabled people have about the effect of the cuts.”

Meanwhile, DPAC’s online protest for those unable to attend the march or rally saw an estimated 200 people email messages of support, which were “pinned” to an online map of the UK. The map, embedded on the DPAC website and other sites, received more than a quarter of a million views. 

31 March 2011

News provided by John Pring at www.disabilitynewsservice.com