Sunday 15 January 2012

The Start of MY Campaigning - Nowhere to turn for the Vulnerable

I have to accept that the majority of people still support cuts to public spending.

I think that in a fuzzy, undefined way, most of them think the cuts will mainly come from dole scroungers, healthy cheats "on the sick", cutting extortionately high housing benefit enabling massive immigrant families to live in mansions in Mayfair and mopping up the rest, the catch all conscience salve of "efficiency savings."

We're talking about at least £83 Billions of cuts. I'm sure most of us don't have a clue about how much money £83 Billions actually is - well it's eye watering. If you believe a single word I write, then believe me, it's not coming from "efficiency savings" and a few scroungers. Remember, tax rises on top of this £83 Billions (mainly VAT) will only account for around £20 Billions. (Only!)

Of course, I am most passionate about cuts to disability and sickness benefits. So often, this group can't answer back, (literally) can't physically march endlessly up and down Whitehall, and they don't have the financial alternatives to benefits that healthy people do. I know it's easy to turn a blind eye, (no pun intended) or believe the oh-so-smooth Mr Cameron when he assures you that the "poorest and most vulnerable" will be protected, but it's just not true, and my Conservative, Lib Dem and Labour friends are united in their belief that this section of society are being scapegoated, let down and abandoned in a way that is truly sickening.

This post won't be short and snappy. It might be a little detailed and specialist, but if you read it all, you'll find a litany of cuts that will make the world an impossible place for many of the most physically and mentally disabled in our society. I don't want to live in this cruel place and whatever your political persuasion, I think you'll agree. Get a cup of tea, find a quiet half hour, and please, please read this.

** ** ** ** ** ** ** ** ** **
Sarah and Keith are in their forties. They have two children, Oliver and Ruby. Oliver is 11 and Ruby is 9. Sarah used to be a Paralegal, but she developed MS 6 years ago. Keith was a Fireman. Oliver was born with severe physical and learning disabilities and is largely dependent for his care needs.

Keith had to first come to terms with his son's profound disability. Then he was dealt the double blow of finding that his wife too, had a progressive, degenerative illness that would shorten her life and slowly take her away from him. He faced a choice : Give up work and look after his family, or see his son and eventually his wife, go into care.

He gave up work and the family became completely dependent on the state for their housing needs, income to buy food and pay bills, care needs for Sarah and Oliver, and transport costs. Nonetheless, Keith undoubtedly saves the state thousands of pounds every month. The cost of pemanent residential care for Oliver would be massive and it will not be long before Sarah would also need full time, residential care. Keith does all of this, largely alone, with just the occasional support of a local hospice for Oliver, that provides a few hours respite care once a week. Oliver does go to a special school and with his modified transport provided through DLA, Keith's dream, is that, with state assistance and Keith's ever constant support, one day, he will be able to live independently, and manage some kind of fulfilling work.

After a year or so, when their lives had somehow settled into the new, (previously unimaginable) routine, Sarah found that claiming Disability Living Allowance (DLA) meant that she could in fact, still work part time as a paralegal. The higher rate mobility allowed her to pay for transport to and from her office and her small firm of lawyers applied for an "Access to Work" grant which meant that they could install a ramp and a special desk to enable Sarah to actually enter the building to do her job.

Today however, Sarah has become too ill to work. Her speech is slurred, she needs help feeding herself, dressing, and she uses a special chair to allow her some mobility. Now that she can no longer work, she has to claim the ridiculously entitled Employment Support Allowance (ESA).

Ruby is a young carer too. Unpaid and unrecognised, she reads to her Mum and brother, makes them meals and drinks and takes on many other small tasks to help her Dad.

Keith suffers from intermittent depression when the stark reality of his situation becomes too much to bear. However, he has no choice but to carry on, daily trudging through the enormously repetitive and physically demanding job of caring for two severely disabled loved-ones. There are regular hospital stays to deal with, Consultant's appointments, costly prescription charges for Sarah, 40 page plus forms to fill in for every bit of help - for DLA for ESA, for modifications to their home (though Keith does as many as he can himself if he can every find an hour or so).

Sarah has to be "assessed" every few years to keep her financial support. Incredibly, the private American firm ATOS, used to "assess" ESA claimants, placed Sarah in the Work Capability Assessment Group, meaning that she was considered by their non-medically trained assessors to be capable of doing some kind of work. (Only 6% of claimants are now being found entitled to long term support under ATOS's assessments. (

Oliver is regularly rushed to hospital by ambulance, his life in the balance, but so far, the incredible local children's ward have saved both his life and his fiercely nurtured dignity.

** ** ** ** ** ** ** ** ** **

Since May, the family have first been concerned, then astounded, then terrified and now desperate as they've heard the endless drip-drip of announcements from the new coalition government.

The Access to Work programme has been cut, meaning that if Sarah was still at the law firm, they would never have been able to afford the ramp and desk that meant she could work for those extra few years.

Their benefits are to be capped at £26,000, with only Sarah and Oliver's DLA payments excluded. They will almost certainly have to move, as from now on, their home needs will be assessed on the cheapest 30% of available housing. A local charity had raised thousands to install a special "Sensory room" for Oliver with lights and shapes and colours that help to stimulate his educational development. They will probably have to leave it all behind as the new home will need to be smaller.

Oliver's special school provision is to be axed, despite promises that it would be protected. The nearest school he could go to now is over 20 miles away, leaving his education in grave doubt.

Sarah was due to appeal the decision made by ATOS that she was capable of work, (40% of assessments were going to appeal with evidence from CAB that around 70% of appeals were being upheld with representation ) but legal aid has been slashed and she will no longer qualify. The government are also talking about limiting the right to certain tribunals anyway, so it's unlikely Keith can even represent her himself..

Oliver will never have the option to live independently now, as the Independent Living Fund is to be scrapped. This would have topped up his care by, perhaps £300 or £400 a month, meaning that with Keith's help, he could have lived in accommodation with only limited assistance. Going into permanent residential care would cost the state many times more and another cut announced, is that Oliver would no longer be entitled to mobility assistance in residential care. He would lose the tiny bit of independence this afforded him and be stuck staring at four walls, unable to get out. Anyway, Keith can't bear it, so will probably just carry on caring for him at home until he's too old or frail himself.

The next time Oliver needs to stay in hospital, the family will lose his DLA. All the extra costs of car parking, extra care for Sarah while Keith is at the hospital with their son, accommodation for overnight stays, will now have to be found from somewhere. The last time he was admitted, there were only 4 trained nurses for every 28 patients instead of the usual 8. The hospital is even talking about closing the ward altogether because of the "efficiency savings" they are expected to make, (which are actually stealth cuts). This means Oliver will have to go to the larger hospital 34 miles away, where he knows no-one and Keith will incur even more costs visiting and transporting him.

In fact, even DLA is to be abolished, replaced with Personal Independence Payments. First the government said they would need to cut around 20% of claimants altogether, recently the figure of 25% was suggested. As Sarah is only in the Work Capability group, it's unbelievable, but likely that she could be one of the 25%. They live in fear. If Sarah loses her DLA, they will lose Keith's Carers and Attendance allowance too.

Because local government faces cuts of over 7%, the council have cut £200,000 of funding to Oliver's hospice that Keith so relies on for a few hours respite. They have no choice but to close now, leaving the most disabled local children without this incredible resource that helps to develop them into adults who can play some role in society.

Keith and Sarah have looked at Keith returning to work, but it would mean most of their benefits would be cut, Oliver would have to go into care, and Sarah would simply have to wait for Keith to be off shift to get any care herself. Besides, Fire fighters are being cut too, so it's unlikely there would be work for him anyway.

George Osborne announced in his Comprehensive Spending Review that for those on ESA in the Work Capability Group who have working partners, the benefit is now to be time limited to one year. (retrospectively) This means that Sarah would no longer have any personal income at all, despite contributing tax and NI for years as a paralegal. Ironically, this particular cut makes it impossible for Keith ever to return to work again.

The family is under so much stress, that Ruby is frightened to go to school, in case her home has been taken away when she gets back. Sarah has considered committing suicide to ease Keith's burden and Keith cries himself to sleep when he thinks no-one can hear him.

It is entirely possible they might end up destitute or even homeless.

Will you help? Will you stop this? Is it really credible that families like Keith, Sarah, Ruby and Oliver carry the burden of our financial woes while RBS give Hester a 2.5 million bonus?

Share, Retweet, Link, Write to Your MP, sign the petitions, join a Disability anti-cuts group, tell your friends, write a blog post or an article for your newspaper.

The dearly fought principles of equality and human rights for all, basic rights to dignity and a life as fulfilling as it is possible to live are being ripped away. The logical conslusion of these cuts are unthinkable. Please, please, don't let them happen.

** The family above are an example of real life stories. Names have been changed.


  1. Cuts are not needed .. it is a constant lie the tories perpetuate every time they take power.. this is but one small aspect of their overall plan to remove all our civil liberties and make us a nation of slaves too frightened to stand against their evils.. that labour are now stating they are needed is not proof that cuts are needed but rather proof only of their utter collusion with the tory party.. \/ I know many of you will be unable to accept this is a truth at the moment but as this crisis deepens the truth will become self evident. There is another way and it involves us the people taking back our rights and personal freedoms from the fascist ruling elite who have so destroyed our society with their constant pursuit of wealth and power.

  2. good honest decent people will not let this happen to anyone, unfoutunately they are all being brainwashed by this govt.

  3. Clr. Ralph Baldwin15 January 2012 at 14:58

    They are being brainwashed by the political unelite who are not representing anyone else other than themselves.....

  4. The Biased Broadcasting Corporation are also contributing to the brainwashing…

  5. Oliver going into institutional care has to cost the state at least £1,000 a week. That's over £50K a year. I bet, before all the benefits were chipped away, Keith was doing that job plus looking after Sarah for far less than that. Stupidity rules. Is the government cutting off its nose to spite its face, or are there plans to do away with inconvenient people? Discuss.

  6. "On whether the cuts are being done fairly or unfairly, 57% now think the cuts are being done unfairly, again the highest we’ve shown so fair. Finally 72% of people now think the cuts are having an impact on their own lives, up sharply from 62% in December.

    Note that 52% of people still think the cuts are necessary, 35% unnecessary. So while people increasingly don’t like the cuts and think they are unfair… a slight majority think they are necessary."

    And there's the rub...How were the questions asked? Who was asked? What questions were asked?

    How many of those asked have any experience of seeing loved one's caught up in the cuts being proposed?

    How many beleieve what the media, politicians and public commentators say? A lot of that isn't fact but opinion.

    How many do not realise that one day it could be them who have to try and get help, fight for help and find there is not as much help as they once thought there was.

  7. I never thought that 21st Century British society would resemble 20th Century German society in the late 1930's,I mean in regards to corrupt political institutions and relentless scapegoating of the innocent.It is a disgrace.

  8. I am my husbands full time Carer and we are in this group of people who are being victimised and made to feel like cheap scroungers, he can't help it that he had a serious Brain injury leaving him with severe Epilepsy and other Mental health issues, all of which are being made worse by all this constant changes and thefts of losing benefits. Firstly this new ESA and him unfairly being placed in the Work group and next the DLA, which was awarded for life, and now being reassessed very soon. We are really struggling to deal with all this and the constant worry! I know we are not alone but what do we do?

  9. My husband is my full time carer. Despite my care needs only growing and growing as I am able to do less and less DLA will not give me a high enough rate in the care portion of my DLA for my husband to claim carers allowance. He cannot work because he has to look after me. He failed his degree making sure I got mine after it took me 5 years of struggling through illness to gain it. Whilst I was a student they wouldn't give him carers allowance despite the fact he had to take the same course, same modules and ensure he was in the same class groups as me to make sure we could both study. He knew my degree was important to my dignity so it was important to him. He knows the small amount of dignity I gain by him looking after me is important so he stays by my side and cares for me despite getting nothing in return. We get £15 extra on my ESA a fortnight as a 'partner' bonus, thats the money the government think it costs to have two people in a household instead of one. We live on less than £8000 a year, far below the poverty line. We stand to lose everything with the cuts. I will more than likely fall into the 20% of people they will cut, seeing as they refuse to even read my forms at the DWP anymore but base their findings on previous ones more often than not. I am in the Work Related Activity Group despite the fact that working would land me in hospital. We are stuck. Worst of all we have rising debts, we can't afford to pay for our electricity. Our current home has oil fired central heating providing minimal warmth and hot water but last week when that ran out we couldn't afford to buy more so now we use a kettle to fill the bath and we use a hallogen heater to warm the two rooms we are using to live in. Even this meagre existence we live we stand to lose. There is no doubt that we are living our life, we aren't, we are existing, barely, and yet they want to take that away. I can't help but feel as if I have been hugely betrayed by those in power, those who have a duty to look after us all.

  10. Most people have NO IDEA what being long-term 'incapacitated' is really like. In fact for most of us it's too scary to really consider how being 'disabled' or ill would change their lives.

    This is one attempt to explain how that experience feels, and what it 'means' for those directly concerned:

    Having a disabling / serious long-term health condition challenges everything you had probably taken for granted right up to that point.... the lightning bolts of ill-health and disability can strike anywhere, at any time. So this really is an example of where we’re ‘all in it together’…. Isn’t it?

  11. My personal circumstances are far less heart rendering but my personal outcome is looking as likely.

    Becoming too ill to work after 30 years is no easy transition; the physical and associated mental health issues are catastrophic enough. Not only is my constant chronic body wide pain crippling but add this to the feelings of worthlessness, as I can no longer financially or domestically contribute to my family, and I battle serious depression on a daily basis.
    My current situation is fluctuating between coping and suicidal, but the additional emotional turmoil I am facing as I stand to become destitute as I turn 50 in April is terrifying.
    Why did I bother to work whilst bringing up my children, maybe I should have stayed home and lived on State Benefits, as that group of Welfare seems to be safer than the ones I genuinely believed I had earned.
    Sorry for the whinge and any tips on keeping the proverbial chin up welcome.
    Thanks again to Sue and all

  12. Alex Young aka alex361916 January 2012 at 08:03

    This situation is a disgrace for the UK. There are people who care all over the world. I am one of them. I am also disabled though from illness not injury.

    If politics fails, if reason fails, if compassion fails, if petitions fail, if legal recourse fails, you can still take down the government. You have the power to see them lose office and not regain it for more than a generation.

    How many disabled are there in the Great Britain? Ten million? Eighteen percent of the population? Well people can run national strikes. Sick people can run a national civic disobedience campaign. Some will not be able to, but with a population base of ten million, not counting carers, it can be done. Some will not want to, they will find ways to survive despite the cuts.

    What of the rest? If you are close to suicide, don't give in to despair. Give in to anger. Put yourself in the local hospital, government lobby, somewhere you will be seen. Stay. They will arrest many of you at first. The question is how desperate will this become? If desperate enough, millions of you can do this. Millions being arrested? I don't think so. Millions going through the court, crawling or being wheeled to the docks? Watch the collapse of the judicial system. Millions in prison or other institutions? There are not enough institutions and no way to fund them. Instead of miserly benefits to disabled people, they will have to pay a steadily rising toll of costs that will be far worse than the financial crisis. It will scare the hell out of them. It will bring down the government. It will put them in such disrepute that a generation later they will be lamenting their folly.

    At the same time, keep several national registers of suicide rates and other deaths by neglect. Write them up in a blog: War on the Disabled killed 22 today - total 2378 for the year. Keep putting it out there. 35 put on the street today, 18 died of neglect, total for this year is now 2394. Euthanasia By Stealth Kills another 12.

    I have been thinking about this for my own country (Australia) should we go the way of the UK. These are my plans for my country, although for now we are moving away from this direction, but I don't see why this cannot work elsewhere.

    Please, no violence. We need people to use reason and compassion. These things disappear when violence is involved. Reason and compassion are the solution, so they should be our method too.

    I hope it doesnt come to this. I can see it not happening because too many disabled people will be too scared, and they will die quietly in their hundreds. I can see it not happening because the government passes draconian laws in the fashion of dictatorships. I can see it not happening ... because the people of the UK rise up and demand the government stop.

    If you think this might work, keep a copy. Expect this post to disappear off the web. I hope you never need to do any of this, I hope your government finally embraces reason and compassion.

    Alex Young, aka alex3619, Australia, Advocate

    1. hi Alex, i wish we here had the guts to what you suggest. we ,all as a nation, sit here and take all this government dish out and do nothing. as you say its no use 1 or 2 doing it we need to get out as a group but we disabled are so scared at the moment. no doubt we will be classed as non disabled because we can sit and have a voice then have our money taken off us, they have us by the proverbials and they now it, nice thought tho and thanks for caring. i have enough abuse here about being a scrounger.

  13. Sorry, you lost me right at the end. Fascinating article, scary conclusion... and then rhetoric about something almost entirely unrelated (RBS).

    (I don't *like* paying that much of a bonus to someone involved in sorting out the mess that the banking system has become - but if the commercial reality is that it costs that much to get the best leadership, then given quite how much of our money is tied up in the RBS, refusing to pay for it to be properly managed on a point of principle would very much be cutting off our nose to spite our face.)

  14. Its anecdotal but a taxi driver I know, his wife has a condition where the vital organs can shut down suddenly, she is almost blind and she is on morphene to control pain...

    She's been told that she has to look for work...

  15. I work in patient engagement and specialise in community development. I hear these stories all the time and it makes me hopping mad! This government doesn't have a clue and whats worse...doesn't care! *sigh*

    C x

  16. A Guardian article showing that the Govt. have made a "Profit" of £80M on incorrect DLA payments - With Overpayments (including fraud) being £220M and Underpayments being £300M. That's not the headline the redtop papers are shouting.

  17. Alex Young aka alex361917 January 2012 at 20:53

    This is a collection of video clips on the importance of DLA. I am about to watch it. The Guardian looks like it has an editorial policy that is presenting patient views.

  18. We are living in truly terrifying times it has to be said. I hope you'll forgive me for asking a question which may have already been answered but where exactly does it leave those of us who have absolutely no other avenues of support if our DLA is taken away? I use myself as an example; I am in my early 30's, have had cerebral palsy since age 3. It often takes me an hour-yes ONE HOUR to walk the 10 feet from my bedroom to my bathroom because of the excruciating pain in my legs. I have tunnel vision, which has caused me to collide with things, which has needed trips to the hospital. Due to the deformity of one of my feet I fall over at least once a day, and since I have Aspergers I find it incredibly difficult to secure any kind of lasting employment. I wonder what David Cameron would say to his sadly departed son who had Autism if he were in this position?

  19. i weep for that family. its a disgrace. i am disbled and my 13 year old daughter acts as a carer, i too live in fear of the daughter cries when she thinks i dont see her. i have had word of having yet another med assesment so i am actually sick with worry yet again. i dont sleep with pain and worry and suffer from depression. i am ashamed to go out for fear of being labelled a scrounger and lazy. cameron has done a very clever job of setting ablebodied against disabled and employed against unemployed and the public do the rest by believing every cruel comment that comes out of his sneering mouth. all i can say is that god help me and my daughter as we live on the streets next year and all sick and disabled in the same boat.

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