Sunday, 22 May 2011

Welfare for the people, by the people - a Consultation

Did you ever wish you hadn't started something?

When I started this blog, I had some hazy idea that perhaps I could share my stories and it might help other sick or disabled people to feel connected. I thought I'd tippety-tap away now and again, saving my poor hubby the trauma of 24/7 news bulletins and political rants.

I didn't for one minute think many people would notice. I'd used the odd forum here and there and imagined a kind of cosy support group where "spoonies" "sickies" and "crips" could enjoy reading the ramblings of someone who actually "got it"

I didn't think I'd find myself reading endless transcripts of a dangerous and callous welfare reform bill. I didn't think I'd be on radio shows or in national newspapers opposing cabinet ministers. I didn't for one second imagine my blog would shoot into the top 50 political blogs and stay there and I certainly didn't think I'd be invited to the Compass conference next month as a guest speaker.

And that's just the stuff I can tell you about!!

You may have noticed fewer posts lately and if you knew the stuff I can't write about (though I will) you'd see why blogging is having to take a bit of a back seat.

I've always liked to learn and OH MY GOD have I been learning. In just over 6 months, I've read just about every theory put forward on welfare reform over the past two decades. I've read Blue Labour, Purple Labour, Policy Exchange, Progress & Compass reports, everything written by Iain Duncan-Smith, James Purnell, Frank Field and Jonathan Rutherford**.

Shall I sum them up for you in a natty soundbite?

"I despair"

Or another?

"Get a bigger stick, throw away the carrots and beat 'em to despair"

I read their "proposals" with incredulous dismay. I wonder just how many have ever actually experienced any of the problems they wish to solve. From the mid nineties, politicians who timidly took the first steps towards reducing the welfare bill have been encouraged to "think the unthinkable" and over the years, they've forgotten that it was ever considered unthinkable in the first place. The "unthinkable" is now not radical enough and, as I write on an almost daily basis, we've reached the tipping point. We are on the brink of removing sickness benefits altogether and disability benefits are to be slashed so far, that sick and disabled people have only the last resort of our judicial system.

We have reached a stage, where only the Human Rights Act or the European Court of Appeal can save us now.

Why? How has it come to this? When asked to "think outside the box", why did every last politician think inside a tiny, claustrophobic box tied up with ignorance-string? How did the "scrounger" narrative get such traction? Why did every last politician consider how to throw us off benefits with little care or concern for where we will go? Why did a succession of Oxbridge educated men choose to focus on a mythical hoard of cheats and skivers, convinced that with bigger and bigger sticks we could be forced into work? If fraud is just 1/2 a percent, what convinces these men that most could and should work? When medical evidence assures them that many of us can't and, in fact, work will make us worse, why do they ignore it?

Now let's see how successful they've been. Since 1994, successive "work programmes" and schemes have been rolled out to get sick or disabled people back into work. Has the welfare bill gone down? Has business embraced us and modified their structures to include us? Have the private companies, paid billions to find us work been successful?

No, No and No.

Not one single thing has changed in 25 years. The sickness and disability benefits bill has stayed stubbornly constant and work programmes have pathetic success rates of between 8 and 15% (almost identical to the number of people who find work on their own)

The solution? Cheat.

Change the descriptors, make certain that fewer people will qualify and break a million eggs to make a rotten omlette. Since Labour started "cheating" in 2008 the rate of those claiming sickness benefits has fallen. Now the Conservatives are about to cheat in such a spectacular way that the financial bill will certainly go down dramatically, but at what cost? Using the model of the past 25 years, this will be considered a "success" as costs will finally be cut. Eureka!! All they needed was one almighty stick and a sneaky bit of legislation or two that effectively all but stops sickness benefits altogether.

One might think that if a government are serious about stopping sickness benefits, they would have their best thinkers devising plans to make sure that the people affected had somewhere to go. That they wouldn't be left to starve without some pretty cast iron guarantees that there would be an alternative. One might think that there would be research available to prove that pulling support would in fact be empowering and manageable, but there is none.

Having said all this, we're no closer to finding out "why?" politicians are convinced that we can all pick up our beds and walk - or are we?

Ladies and gentlemen, I give you the "Psycho-Social Model"

Allow me to paraphrase. (The link above will give you the scientific stuff, I'll just put it in Sue-speak.)

We are all sick or even disabled because we choose to define ourselves as such. Despite our various diagnoses, those that manage to work have a better psychological grip of reality and do not become "victims". We choose to stop working from a lack of confidence or fear of failure and become lazy and plagued by doubts. The longer this fear develops, the less likely we are to find work and stay in it.

Any symptom, and disability can be overcome through perseverance and the right mental stance - we simply need re-training in our attitudes. Hence the conclusion we reach today, where you ask what work you can do, not how your illness or disability limits you. Those unwilling (remember none are unable) to find work they can do will be abandoned.

Time Limiting ESA will enshrine this in law. If you haven't overcome these "psycho-social" flaws within one year and found work, the state will wash it's hands of you. That's why the language speaks of "helping" us into work. The paternalistic state will stop our metaphorical pocket money and take away our sweets if we are disobedient. If "encouragement" doesn't work, there are a whole host of sticks to beat us with.

This also explains an assessment that focusses solely on what we are physically able to do and ignores any  pain or symptoms or distress. Pain and symptoms and distress can all be overcome according to the psycho-social model, they are simply a part of our psycho-social weakness; shields to keep the world away, to wallow in our own helplessness. If you can swallow or do up a button or pick up a penny, you must, no matter what it costs you, or you are simply allowing neurological impulses to get in the way of a full and financially productive life.

It might not surprise many readers to find that Frank Field and James Purnell are the most zealous advocates of a psycho-social approach to welfare. Reading my red-top precis, academics may nod sagely, believing there is much to recommend the theory. And that is the vast, putrid, hideous, terrifying problem.

If you don't have MS or bowel disease or cancer or schizophrenia or alcoholism or parkinson's or lupus; if your research is conducted in an academic bubble of theories and sociological studies and think-tank jargon, you might as well be designing policy for fish. However much an affluent, out-of-touch politician might think a theory is the answer to all their prayers, you simply cannot make an unsound theory fit reality without cheating.  An alpha-male, who has sailed through life without physical trauma, poverty or disadvantage, will simply be totally unable to empathise with the nuances of suffering. They can no more design a welfare system that works than I could design a new offside rule.

Until sick and disabled people start to put forward their own suggestions, their own answers, we will remain in the hands of ignorance and arrogance. Until we are at the heart of policy making, we will suffer policies that may as well have been designed by aliens. The time has come where it is no longer enough to oppose, we must educate and inform. We must save ourselves, because my endless nights spent poring over welfare papers has convinced me that we have no alternative. Privileged academics and politicians have proven themselves horrifically incapable of even beginning to understand our lives and if we are to get a welfare system that actually works for us, we need to start making suggestions. We have the experience, the knowledge and the understanding and they never will.

So today, please use the comment thread below to explain what would help you. Contribute your ideas and suggestions no matter how silly or unformed you think they are. Share your stories of trying to work and how the system has failed or supported you. Make them essays or make them just a few words. I don't care how long or short they are. Tell me what work you could do and what support you would need to do it. Does the state itself trap you? What could business do to enable you? Is there a working model that could suit you? What type of work would you like? Why is it unavailable? Do you want to work? Would it make you better or worse? Would it increase your affluence or plunge you further into poverty? In an ideal world, what would governments be doing to support you?

Remember, this is a brainstorm. Write anything. It can't possibly be more banal, mis-guided or unworkable than the suggestions of successive politicians.

Please help. Join in, engage, show politicians our endless strength, our great value and our hopes and dreams. Help me and I'll do my very, very best to help you.

As I started this article by explaining, I have been given a voice. I have the privilege of a platform. It's your platform too and I need you to share it. Otherwise, I might just end up as another mis-guided fool who thinks she knows it all. I can speak for myself, but I can't speak for you.


*Finally, please share this article with anyone you know who suffers from a chronic illness or disability. Urge them to contribute to the consultation, tweet it on twitter, share on Facebook and email to friends. Any consultation is only as good as the people who take part. It needs variety and balance. Thanks. 


**Rutherford is the one beacon of hope. He exposed the psycho-social model and opposed incompetent welfare reform before most of us knew it existed. Read more here

225 comments:

  1. I think one of the main problems with many illnesses is that you can't state categorically that on any given day you will be able to work. Employers don't like that. They also don't like it when you have to take several weeks off for surgery. With all the technology available today it should be easier to be able to work from home on the days you cannot get out of bed. If there were funding available for employers to set up home working for the disabled or sick and also a bank of temporary staff they could tap at a reasonable cost to cover times when you are in hospital or going through a really bad spell, I think they would be more willing to take on the financial risk of employing someone who was disabled. Because until you level the playing field employers won't risk employing someone who in all likelihood will be unable to come into work every day. It simply will cost them too much. If an employer has a choice between someone who will probably make it into work most days and someone who probably won't make it into work at least 3-5 days a month, they are going to chose the healthy person, it's pure economics.

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  2. Great first comment, thank you!
    Please encourage others to take part too.

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  3. Seeing how much it's costing paying Atos Origin and funding the appeals & tribunals, it would make much more fiscal sense to instead rely more on the medical evidence provided by the claimant's doctors, therapists, specialists, etc. Then use the money that's saved to fund more and better DWP in-house investigation teams, using current laws such as RIPA to investigate claimants where needed.

    All the scrounger stories The Mail like to regurgitate with glee result not from Atos catching people out, but from investigations.

    "[T]hose that manage to work have a better psychological grip of reality" may actually more refer to the person's mental aptitude, and those that manage to work despite disability may have a higher mental aptitude in this regard, much like Liniford Christie has a much higher running aptitude, some disabled people have a higher coping aptitude.

    Not everyone can be as fast as Liniford. Not every cancer sufferer can run a marathon. Not every disabled people can work. I envy the ability of those who can.

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  4. I love the Linford Christie analogy.

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  5. First off Sue I would look at how we review disabled benefits by only having the review carried out by people who know about the condition there reviewing!
    I work as a volunteer with the HIV/ Aid's sector dealing with people from the begging of there diagnosis to the end of there lives!
    To many times we find they have had a review that's pushed them back into full time work because they look OK How people look and how they feel are two very different things!!
    Steve Worrall
    Only last November a friend who had been taken off the small amount of DLA he received (The lower band) to make him look for full time work! Sadly he had advanced cancer's a secondary disease caused by HIV disease which finally killed him so rapidly it was both shocking and sad! He went from fairly robust handsome man to a withering piece of living skin and bone!! (I can't think of another way to convey what happened)
    He wanted to work as most do but could not find anyone who would employ him with the time off he needed to attend clinic and hospital stays that a lot of people with his condition need! As it turned out he only needed to look for about 6 months for work before he became to ill.
    One night just before he died he told me his dignity was lost not through his illness but the way his review happened, he felt ashamed for receiving DLA after the person conducting the review said we want this money to go to the worthy (He felt he was not worthy because he looked OK)
    3 Day's later he passed just after I left him in his final deep sleep they induced to stop his suffering! That day I also lost my dignity! I should have stopped them taking his money but No I was busy as we all are at times, If I had been able to stop them taking his money then he would still have eaten better than he did and felt less of a BURDEN!
    Sorry I am not offering much in a way of review!!
    I guess it's best that we ask those who go through an illness to help shape service delivery! Those of us who are well will never truly understand what it's like!!.

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  6. If we must have a test that compares function v ablilty to work then it must be based in the real world. I havn't seen any jobs that are entirely based on me going into work picking up a box and thanks very much thats all for today.

    Yes lets look at what we can but we can't ignore what limits we have either, for most of us doing something will have negetive effects on other parts of our lifes/bodys.

    So let some clever person work out based on the ECA test what I can do and for how long and tell me what % of job I could do and if any jobs like this exist. Then by all means if this magic job exist put me on JSA until I get it, if like I suspect such job dosn't exist then they accept that in the real world some of us will need support.

    You cannot keep telling a group of people you can work yet no suitable jobs exist based on 'what we can do' model. Why does noone in goverment see this major error?

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  7. p.s By box I of course mean the large empty box in the ECA test not a real box with something in it! That would just be to much like real life!!!

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  8. I just lost my comment, and I'm rather pissed *curse*. I'll try and reiterate.

    I've had several self-employed businesses before this one; the last was soap/body products and as I told Sue over the phone, I broke even last year. However, it was hell - I have no car, very limited health and energy and even though I had return clients, more shows than I could even book into a week and plenty of fanbase, I had to stop running it. Again, this was NOT because the business wasn't successful- it's because it was becoming successful and I couldn't keep up. I didn't have enough to hire an employee but I desperately needed one; someone who could drive, handle accounts, send to fairs and trust with the money, and to wrap soaps or do packaging when I was having a really crap day. In theory Access to Work would have helped with this, but their budget was cut. So...bang when that theory.

    Now I'm doing writing and artwork. The tax credits are keeping me alive but I know very well that I have maybe two years max for this to work out. Two years, and if it doesn't all these cuts will put me on the street. I'll lose everything. I simply cannot fail. But again, I'm in the same situation; no car, no way to get to galleries (and of course the arts have been cut now as well). I have a special needs child and there is NO childcare for special needs children which is even remotely affordable, so I have to cut my days short so I have the energy to cope with my son when he gets home.

    So, what do I think needs to happen? First of all, if you're disabled and don't have a car, you need one. Public transport having gone private is the worst thing which could have ever happened to us, and we pay the price. I am not saying I want a Motability brand-spanking-new car; but I do know that at the end of their lease term, Motability cars are all over the place and no one has the money to buy them. What if after the three year term, Motability would give over these second-hand cars at a reduced mobility rate to self-employed disabled people? People who wouldn't normally qualify for high rate mobility but who don't have wheels and show a definite need due to employment - I have tried taking a traveller bag full of soap onto a bus and train to a show, it utterly sucked. I NEED a vehicle. I also need it to have adaptations and be licensed to someone else to drive. I can't get that without fighting DLA for High Rate Mobility and it makes no flipping sense. I don't like cars that much - they're expensive and they're a money sink. But I'm well aware in this day and age if you don't have one, you're stuck.

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  9. Chris Morris22 May 2011 10:28

    Sue

    off at a tangent as usual. Apologies for going off topic, but it is kind of relevant, hopefully.

    MP for Slough, Fiona Mactaggart, has MS and is an ovarian cancer survivor. And a fully paid up member of the human race. I saw her at a Tun Wells/Wealden CLP event recently. Was impressed when she got angry with a well meaning but ill informed critic in the audience (all 26 of us, and no, it wasn't me this time, honest). Chucked her papers to the floor. Then apologised. You should maybe get her on board, if you don't have her already.

    Do any of the great and good among your Facebook friends read your blog, and if so, any of them prepared to get stuck in on your behalf ?

    I have a positive story to tell about good employers supporting staff with serious health issues, but not here or now. Prefer to do the full personal background face to face. Not least because I do not quite agree with the official diagnosis. It's no secret, felt like half of KCC knew about it (I am egocentric that way), but it is complicated and I usually feel the need to gauge the response as I go along to tweak the storytelling.

    This should be a good thread. Will provide lots of ammunition for when the fighting starts.

    Any chance you will get invited to speak at the Labour Party Conference ? I think that could be a good idea.

    best wishes
    Chris Morris

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  10. Secondly, the childcare issue - childcare for children with special needs has got to be addressed. Childcare is insanely expensive, and more so if you have a child with special needs as you practically have to have a registered nurse there to watch over your child. I simply cannot leave my son in a mainstream childcare situation without disastrous results. This has got to be addressed; either we need accredited and state-supported special needs branches in main nursery franchises or the state needs to not be so tightfisted with its special school residential placements. It can't tell us we have to work and then offer no care options for our children.

    Thirdly, we all know the jobs are thin on the ground. I have yet to understand why there isn't an effective "pairing" system between disabled people and unemployed specialists who may want to try and get a business off the ground. Yes, this could be rife with abuses - disabled people are vulnerable and therefore could be targets to the less scrupulous. But there needs to be a realisation that some of the only work many of us can do is at home, and self-employed disabled folk is better than nothing; with the appropriate software and a more able person to help with some of the stuff we might struggle with (accountancy, ordering, fine detail work, driving and business accounts, etc etc) it leaves us with the time and energy to do what we do have the energy to do - typing or dictation, craftwork, fixing computers, creating art. For my part, I want to be left alone to do what I do best, which is create. All the actual "business" aspect of being self-employed is a drag. But maybe for someone else they love the challenge, but they don't have the ability. Put those two together and form a business partnership with agreed intellectual property rights and agreements beforehand, under contract to protect both parties.

    Would it be perfect? No. Are there loopholes? More than likely. But there is no such thing as a perfect system and has already been said, what is there to lose? Look at the options we're being given and tell me it would really be any worse than what we're about to face. I could go right back to my soap/body product job right now, actually if I had an extra pair of hands and a car to do it in. If I had a subsidised loan to buy the overpriced shop space on our High Street (another conversation entirely as my city is clueless, but there's no Lush here yet so I have no competition), I'd just dedicate myself to making new formulations at home and let someone else handle the store. I certainly had people calling time and again for my stuff, and I still get calls for it. It hurts to have to say I've stopped trading, especially when it was success which was doing me in, not failure.

    Honestly, why not? Why can't it work?

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  11. As someone who deals with mental health the thing I need most is support and help with the basic task of living.

    In the last three years I've lost count how many time's I've gone to my doctor trying to get referred to CBT so I can start on making improvements in my condition. Each time she insists I must go through First Steps despite her own belief I should need go straight onto CBT, she admits she doesn't have the power to refer me straight to CBT without first making me go through First Step.

    First Steps themselves have admitted to me they are ill equipped to deal with my condition, have limited resources and never made the appointment I was promised, instead I got letters reminding me to phone and make an appointment despite having already done so at great cost to my health. Again, my doctor knows full well I have difficulty with making phone calls and knowing full well this is the only method for making an appointment (email would have eased some of my anxiety, but is not an option).

    So for the umpteenth time I have been left to rot in my own ill health despite my desire to try and make improvements (even trying to do what I can on my own, but that's limited).

    The problem is too many people like myself are left to rot in their own mental health and we're the people who do stand a chance of improving our condition and potentially finding work.

    The hurdles need to be removed from the doctors so they can decide who needs First Step counselling and who is ready to move onto CBT (I've already had counselling and that is why my doctor wanted me to go onto CBT).

    Once you begin CBT you are then given your own social worker who can then help you with other aspects of living and these are the very things I need and still haven't received.

    Three years on and I am still no further on from when I first went off sick and despite my own personal efforts, I'm still limited as to what I can do on my own without social intervention. This is the help and support I so desperately need, but constant hurdles and brick walls prevent this from happening.

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  12. Chris Morris22 May 2011 10:40

    @ Oya's daughter

    my wife knows a few people in the arts world. It is very competitive indeed and to get anywhere you do need to be outstanding. My email address is Christophermwm@btinternet.com. If you have anything you can email me I can ask Felicity to take a look. Absolutely no promises, but you will at least get an honest, quite possibly brutally frank opinion and maybe some contacts can be set up if you do have the right stuff. If there is anything here I can get you to galleries. Elderly campervan a bit like the Tardis. But repeat, no promises. The work will stand or fall on its own merit.

    best wishes
    Chris Morris

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  13. I have both lupus and another unspecified illness which has resulted in quite severe physical disabilities (electric wheelchair, unable to dress etc, etc).

    I've been ill for around 15 years but was fortunate to have my dream job a la Hawking: theoretical math researcher at a university. This meant I could work from home in bed as much as I liked, no specific work hours, going to hospital appointments with no issues.

    But as both illnesses progressed I finally had to give even this up 18 months ago and was put in the ESA support group (although not without some hiccups along the way!)

    My problem with it is this though. What stopped me working was NOT the physical disability. If I had only had that I would still be working to this day. It is the effects of the lupus which are the most disabling and which prevent me from working.

    Yet I am absolutely certain that if I only had the lupus I would not qualify for the support group and in fact having read the descriptors am not even sure I would qualify for ESA at all.

    I am in the stupid position that I feel GRATEFUL for having a horrible progressive physical disability. Without it I would almost certainly be in the position of being totally unable to work yet not receiving the help I require.

    The test and the government and think tanks obviously don't understand the effects of illnesses such as lupus and how they can ruin and stop a career.

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  14. Overhauling the welfare state is easy i told my conservative mp and he agreed with me having put to him my idea i put about scrapping ATOS and just let the NHS /DWP link up with the consultants/ doctors/health workers for all information that is needed on a patient about weather he or she is fit for work or not
    Very simple especially for someone like me who has been unwell most of his life let us cut out all the bull.

    The government know full well that they are breaking the EU laws on the human rights of patients and every time that a court case comes up the judge always finds favour with the person or persons that are being punished THE SICK AND DISABLED through no fault of their own

    What will happen over the coming months to bring this matter to a head will be a sick or disabled person dousing themselves in petrol in a DWP department just like in Tunisia where Mohamed was a Tunisian street vendor who set himself on fire on December 17, 2010, in protest of the confiscation of his wares and the harassment and humiliation that was allegedly inflicted on him by a municipal official and her aides. His act became the catalyst for the Tunisian Revolution,
    And his act was defined by We must remember him says obama the USA president

    And that is regretfully what will happen in this country i feel and until that day comes about David Cameron will just keep beating us with his stick and killing as many of us as possible aided by IDS

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  15. These are really wonderful everyone. I'm fairly sure we will easily get more submissions than the average DWP consultation. It's really important that as many people contribute as possible - don't be shy, even if you think I won't like the comment or it sounds silly :)))

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  16. I suffer from something that affects us all, rich or poor, it's called old age. Compounded by COPD I am gradually finding I can do less and less of things even a few months or years ago would have bee undertaken without a thought, so I am finding I have a greater understanding of those with the various disabilities you mention. But I have an advantage in that I am not labelled a scrounger, but the elderly have different attacks to face mainly driven by jealousy etc. you know the ones "why should they get help with their heating in winter" or "why should the hard working taxpayer fund the gold plated public sector pension schemes" but I digress this is about disability and the social conscience that makes the welfare of our vulnerable in society important. The aim of helping those disabled who are able with some help to work is admirable but falls down by not recognising that all people are different and there desire for work as a goal varies. For instance limbless ex servicemen doing a polar trek is great but should you require all limbless people to join polar exploration groups and would the public purse be prepared to fund such a thing ?
    Employers are driven by cost and outcome goals so until it is made worthwhile for employers to employ those with disadvantages in either being reliable at turning up for most days and fully carrying out the required functions equal to a fit person they will by and large opt for the fit employee. Yes encourage those with the desire to work but do not penalise those who feel unable or as yet not ready for the challenge. The starting point should be to get employers to wish to actively seek out those with disabilities to employ as it will be advantageous for the said employer and only when jobs are likely to become available can you truly help those on welfare into work.
    Putting time limits on income puts needless pressure on those already feeling the lower self esteem generated by the "scrounger" tag.
    The "Daily Fail" screaming headlines of wheelchair bound claimants running around football fields winds up the general public to perpetuate the "scrounger" myth and probably even encourages some "flash Harry's" to try it on.
    Well time to get off the soap box and get some breakfast keep up the good work Sue.

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  17. Having trouble with comments here on Blogger, Pls feel free to comment on Facebook http://on.fb.me/m2Zwdr or email suey2y@hotmail.co.uk
    Thanks.

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  18. I really don't know what I can contribute to your collection of opinions, or even if my opinion is valid as I don't actually receive any disability benefits on my own behalf. I am saved from having my mental health assessed because I receive DLA and Carers Allowance for my youngest son who has an autistic spectrum disorder.

    I do know that, were it not for the benefits I receive because of my son's condition, I would be in the position of trying to find work despite my depression and anxiety. With mental health problems it could be said that the psycho-social model applies even more than for physical disabilities. After all, it's all in your head isn't it? Physically, I am capable of working; intellectually, I am capable of working; psychologically and emotionally I am completely incapable at this point in my life.

    As an example, I attended a National Autistic Society support group meeting on Friday morning. The other ladies present were lovely, friendly and welcoming and I was pleased to be asked to stay for lunch in the cafe afterwards with two other ladies. All of this was very pleasant and I enjoyed the social interaction, which is a rare thing in my life. However, the energy required to keep my "social face" on for that long was enormous and I was physically exhausted and emotionally drained for the rest of the day. I felt very low and struggled to cope with my youngest when I'd collected him from school. I couldn't manage to interact with other people for prolonged periods of time several times a week in order to hold down a job.

    If my circumstances were such that the authorities were trying to force me into work (still something that may well happen in the future), I would need to be able to have no pressure to be in a certain place for a certain length of time as that induces panic attacks. I would need to be able to walk out whenever the strain of being there became too much and I would have to be able to work when I was able and at a pace that I could cope with - the pressure of the deadlines when I was completing my OU degree were nearly enough to finish me, despite the flexibility of that method of studying.

    Is it all in my head? Possibly, but the last time I tried to return to the workplace I lasted just ten days before my GP advised me to stop work due to the effect it was having on me. That experience stays in my head and exacerbates my fear of attempting to try again.

    In the future it will be my son who is trying to find work in a hostile marketplace that does not understand his disability. He is a very intelligent and communicative child but his social impairments mean that he is abrasive and even aggressive and abusive in his manner and it will be nigh on impossible for him to work in any situation involving contact with the public, even working with colleagues may be beyond his abilities and he would need sensitive and understanding employers and workmates to make any form of employment possible.

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  19. Uk_Exile (on Twiiter)22 May 2011 11:22

    I think for serious mental health issues, the solution is quite simple.
    If you have serious mental health issues, you are already normally under a CMHT ( Community Mental Health Team ) You have allocated specialist Consultant & a care co-ordinator.
    These are the people who should decide, if you work or not.
    They just need a letter or a phone call from DWP, which could be done every year to review the case.
    No need for ATOS, in these cases. That will save some money.
    I must say that I am really dismayed that these so called 'functional' 'medical' assessments, take no account that a person is under psychological treament, on a waiting list for treatment, or not well enough mentally to engage.

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  20. You are just fantastic! This is what I would change

    I would change the descriptors to add in pain and fatigue. Being able to do something once does NOT mean you can do it all day and with MS every single day is different. Its not called MULTIPLE just for the fun of it - One day I can have bladder issues - The next I may be in pain all day - The next I may be fatigued all day - They need to understand that I cannot fit into a tick box system as MS does not work like that - No two people have the same MS. My mother has MS and hers is different to mine - with smoe similarities like fatigue and pain.

    I need them to understand MS and how it affects your body when you cannot keep up day to day with what you are able to actually DO!

    ATOS ned to be sacked - In this if they talked to the specialists that most people actually SEE - They would know how the impairment affects life. Then they get value for money cos the NHS people are already paid for. ATOS are only there for one reason and that is to deny people - They get extra money for everyone they deny - That is NOT how the system should work!

    I am so sure this breaks the Human Rights codes/laws - Where is the human right in telling people they are not disabled when everyone else knows they are? Where is the dignity in disability that people should have ?

    Just because i might be gifted with one good day (oh i am waiting for one) that does not mean that I am able to work - WHO would employ someone like me who has so many issues and doesnt know till the morning they wake up if they have the spoons to go to work all day or not? Its ridiculous to say someone is fine to work when it is known that is a lie and more ridiculous to make them sign on JSA when by signing that they are made into a liar as you sign saying you are looking for work and are ABLE to work.

    Therefore this govt are making liars and cheats out of us - Just because of the situation they are forcing us into.

    Its not that I dont want to work - I WANT MY LIFE BACK SO MUCH SO MUCH OOOOO MUCH but the mere fact is MS has taken so much from me that I am unable to - Not to mention if i pee on their floor they might get a tad angry at me..... specially after the 5th or 6th time eh

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  21. Silent Linda22 May 2011 11:38

    Making it easy to transfer in and out of work is an essential element I think. I've just found 4 weeks work, just above the ESA hours threshold... so I have to sign off and back on again. (not an easy task if you can't handle the phone).

    Finding a work I could do was a confidence sapping task constantly seeing jobs that I would be able to do except...

    4 weeks seemed like a perfect tester and chance to boost my confidence again... but the hurdles it's put in my way, and of course the risk of them saying I don't meet the criteria when I re-apply since I've managed a few weeks in work, make me think I've taken a big painful risk taking a little bit of work... I didn't want to still get benefits while I was in work, just to be able to easily stop and restart them. The cost of re-assessing me will way outweigh the saving of 4 weeks benefits, but I'm very unlikely to be able to get straight back into work... it's going to need to be a very gradual staged approach.

    Also "I can't believe it!!!" about what they are doing to "access to work", it kept me in full time work for 5 years before I had to finally go onto ESA... without it I'd have had 2 yrs part time then 3 years benefit claiming!

    So to summarise, my suggestion is:
    Invest to save
    in:
    things that make it possible to keep a job you have e.g. access to work
    things to help you gradually transition in/out of work e.g. flexible claims
    things that make it easy for an employer to take you on/keep you on... this is a long list that includes supporting the employer with the additional costs of temp replacements for people who have variable conditions and lengthy treatments

    How about getting a team of able people who just happen to be disabled and challenge a government office to run a project just using disabled people as staff, looking at barriers to employment and ways to overcome them.

    I'm not being facetious here... I am a very able Prince 2 qualified project manager (on days that I am able to work)... why don't we challenge the Government to learn experientially what it's like to employ disabled people and come up with some solutions to boot?!

    I'm serious enough, that I'd happily join a team to write a project proposal if there's a couple of people with relevant skills/contacts who are also interested?


    Oh and @Wokstation... paragraph 1... absolutely!

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  22. I believe somehow - some people (as many as possible) need to gang together and ALL somehow with help take this govt to court of human rights. Somehow. If there could be hundreds of people doing this - then I believe it is the only way That this govt would see that this is totally abhorrent and wrong. Or they would back down out of embarrasment - either way is good to me.

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  23. Comment from Rosemary O'Neill : As we both know, in its present form DLA can be used by those in work too, help with costs of getting to work. If it is withdrawn many ill/disabled people will need consider packing work in. Anyways, for me it is not just about being found 'fit for work', but also finding a suitable job that would be long term. What I mean is - if a disabled person found fit for work has his/her benefit reduced but takes for example over 6 months to gain employment, in those 6 months the disability is still there, the extra costs are still there, but the money isnt. 6 months figure is just used as an example...some may never gain employment. As someone involved in carer issues my concern too is the double whammy that will hit some families. If DLA reduced/withdrawn there is a risk carers allowance will go too. Yet the caring role will remain.

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  24. Silent Linda - please email me on suey2yblog@hotmail.com - I may have something you could help with.

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  25. I feel I have to say that while I would desperately love to work, I am simply not able to. My illness is severe, it is erratic and it is hugely debilitating. I have several other illnesses on top of the main one as well. When someone reads this it may seem like an exaggeration, I know because I've read it in the past and thought - really? But it is true. I could list them all, but I won't bore you. An employer might get about an hour a two a week out of me if they were lucky to catch me on a good week.

    And before anyone comments about 'how did you manage to read this blog and write a reply?' - I will respond - With enormous difficulty. It has taken me over 2 hours. I cannot look at the screen, or type, for long, so it has been done in short spurts. My eyes cannot focus, my head is spinning, my wrists and fingers are aching and my shoulder, elbow, hip, knee and ankle joints are agony as I sit in the chair to do this. I will be completely exhausted by the end of it. If I were to be forced to do this as work I would quite simply collapse.

    Employable?

    This fact must be rammed home to them - there are people who simply are too ill to work. And don't get me started on the psycho-babble social model! I was actually in the middle of a 4 year psychotherapy training when I collapsed and became bed-ridden for 4 years. I understand psychology. I did not choose to stop working from a lack of confidence or fear of failure. I have not become lazy and plagued by doubts.

    I sold my house and used up all my savings in order to try every treatment under the sun in an effort to get well - thereby leaving myself with no money to afford to buy another house. Nothing has worked. Twenty years later, I am still ill. I did not ask for this. My previous life has been devastated, no partner, no children, no home, no money, no possibility of cure.

    But I am still here - a valid member of society. They try to say that those who manage to work have a better psychological grip of reality - I would argue that those who manage to keep strong and keep going despite suffering the most horrendous illnesses are those who have a grip on reality where this is concerned. We are the ones who have a positive attitude which has been hard-won through years of fighting, struggle, disbelief, stigma, ridicule, hardship, humiliation, pain, exhaustion and physical, emotional and mental challenge.

    The solution?

    Stop treating us like liars and cheats. Stop using us as pawns in a political game.

    Accepting medical evidence from Doctors who are treating the patient must be the first port of call. After that, in the vast majority of cases, there may be no need for any further costly assessments, wasting tax-payers money.

    Not putting people who are seriously ill in the ESA group for people who are "fit to undertake work activity" and forcing them out of it after a year.

    Somehow the sane politicians out there must be made to see that for a large number of people whose disability is a debilitating life-long illness, this is an ideology that just won't work in reality.

    And somehow, some way, they must be put back in touch with their humanity - it must exist in there somewhere. Under all the ideological masks, the strategies, the in-fighting and point-scoring, the egotistical ambition and power-greedy ladder climbing.... there are human beings.

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  26. You can only get carers allowance sue if you get DLA at the medium /high personal; care only so if you get downgraded to lower personal care or lose it altogether your carers allowance goes also

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  27. Loads of good points. There are so many ways to help (some) disabled people into work, but they all cost money. What the Government has apparently forgotten is that parking most of us on benefits is actually the *cheap* option. Supporting our societal integration in all respects, including employment, costs the taxpayer more. The only way to keep the cost of it down would be to make absolutely sure it was done very very well and efficiently, and for that they need to listen very carefully to disabled people themselves, NOT people claiming to represent us. And as mentioned above, sack Atos.

    The only way I could work anytime soon would be if all compulsory qualities were removed. My problems began when I was raped at the age of 3, and, having remained traumatised for the next 15 years or so, I must have grown to associate any compulsory activity (eg. school) with violation. So now, being forced to do anything on pain of punishment (eg. withdrawal of income) makes me all... stabby. And I have no intention of taking it out on myself. I see no mention of the negative effects of the use of the stick in the Govts plans, presumably because they think everyone responds to it. Perhaps each individual needs to be asked whether the requirement to turn up to work would help or hinder their recovery/symptoms.

    I'm talking mainly about people who cannot work at the moment here, of course.

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  28. PLEASE NOTE, SOME COMMENTS GO INTO SPAM. DON'T DESPAIR IF YOU SPEND HOURS WRITING ONLY TO LOSE IT ALL. I'LL PULL THEM OUT OF SPAM AS SOONAS I SEE THEM.

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  29. I guess it is easy for the up there on their millionaire pedestals to say how we are scroungers - But who is the scrounger? The one who has to get help to live or the one who just happened to be born into a family of great wealth? If you got to go to eton just because your parents were rich - You did not EARN that through hard work and trying - No - All you did was be born - They look down on us like we are nothing - If ALL of us nothings did nothing - THEY would not be able to do a bloody thing either. I wish we could remove all their millions so they would be forced to see how the REAL people live.

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  30. To be able to work for HMS a varying physical condition and with fatigue and migraines. Would need the employers to enable people to work from home, provide them with laptops, be able to do the work when not affected by migraine or fatigue, provide with speech software for when wrists, arms, shoulders dodgy. Understanding that due to medications the work may sometimes not be accurate. Dont know how in certain jobs data protection is ensured re working from home. Allow time for hospital appointments and physio at home.

    Re benefits, NHS etc. The psycho/social model has become endemic in the NHS also so GP's and hospital consultants are being encouraged/forced to word things in ways that are non-negative about work ie 'fit notes' etc. and there is a sustained effort to push this model as being the only option. There are many conditions (mine being one) lupus, ME, Fybromyalgia - which are not fully understood re impact on the patient from the point of view of the medical profession, never mind welfare - understanding of this needs to be addressed and the understanding that this psycho/social model was set up by US insurance companies paying psychologists to find a way out of them paying claimants. It is of paramount importance to understand this and get rid of it.

    It needs to be easier to move between in and out of work and also ESA should be done on reports from consultants and drs with expertise in the field - a second opinion should be available for people whose drs dont understand their condition, by an expert in that area. Conditions which are for life should mean that once assessed for DLA/ESA the award should be for life - with a list of conditions which are life long. Any condition which a cure is found for could then be taken off the list and the people affected contacted and reassessed at that point.

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  31. "Conditions which are for life should mean that once assessed for DLA/ESA the award should be for life - with a list of conditions which are life long. Any condition which a cure is found for could then be taken off the list and the people affected contacted and reassessed at that point." [latest Anon]

    I like this, too.

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  32. YES!

    Quote*
    It needs to be easier to move between in and out of work and also ESA should be done on reports from consultants and drs with expertise in the field - a second opinion should be available for people whose drs dont understand their condition, by an expert in that area. Conditions which are for life should mean that once assessed for DLA/ESA the award should be for life - with a list of conditions which are life long. Any condition which a cure is found for could then be taken off the list and the people affected contacted and reassessed at that point.*

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  33. Thanks for this opportunity Sue. I was doing all right. I was seeing some recovery and doing a small amount of voluntary work but because I was naive enough to tell the nice ATOS lady they removed my benefit. This made me worse and I am now permanently under the care of the CMHT with the resources that uses. My recovery has been put on hold while I appeal that decision and our lives have been put on hold until we know the result of that. I lost my car, my independence, my sanity for a while and almost my life. I would like to know how that is helping. It's not so much the mechanics of losing my benefit, but when one is so vulnerable it is the feeling of being judged, of being ashamed, of being considered a fraud and of not being believed. My psychiatrist tells me that his objective letters about his client's conditions are being ignored and that many are in the same position as me. He tells me I won't get better until they sort my benefits out. With a tribunal in the offing there is no guarantee the outcome will be in my favour. I told him I was very frightened about what would happen then, as we will no longer be able to afford the rent.

    Maybe we are all too dependent? But making us MORE dependent by pulling the rug out from under is not the way to go forward. There needs to be massive investment in people, in mental health services, in preventative measures so that kids growing up realise there's more to life than getting stuff and celebrity, in helping society find meaning. Yes, foster self-help and an independency culture, but do it by supporting people, not by frightening them half to death.

    The fact that job centre staff are receiving training in how to deal with the suicidal should be sounding loud claxons in government.

    I need my benefit back. I would have coped with them saying, do you think you could do two hours paid work a week? Here's an appointment with an enabler to help you do that, and we'll scale your benefit down as you get into work. In fact I wanted that to happen. Now I'm as much use as a chocolate fireguard to an employer and I've got to climb that recovery hill all over again.

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  34. I know this may sound silly but when i watched Jamie's Dream School and learned a little more about Cherie Booth being a human rights barrister. I researched how to get in touch with her and wrote details in a note book or on a scrap of paper, which I have since lost. It would be quite a thing if she took this to the human rights courts wouldn't it?

    That aside. I want to work but I have not had a day for many years where I would be fit to do a gentle days work and then do it again the next day. I could not do the car boot sales I survived on after my ba and I was in the period of getting no help. Yes easier in and out of work access, especially in ways for those with a mortgage because those with rent may have it messed up for a while but at least it finally gets paid. A new claim if you have a mortgage does not get considered for 13 weeks.

    If I was able to get out and earn money selling my hats, scarves, bags, art, practising and teaching Reiki, if course I would be. I told them on my forms in 2004 that if I were supported I could make my wares and go out getting business. In fact I will never know but I think I may not have got so debilitated if I'd had adequate support to build myself up from the start. It never came and by the time my council did assess me the cuts had meant I fell through the new wider net. Malnutrition has complicated and exacerbated my conditions.

    I was saying a long time ago that if they spent money on properly supporting people, without bullying them then people would not be affected so badly by conditions that are magnified considerably with stress. This is why I have come to the conclusion that they are either very ignorant or very cruel. I have felt it more to be cruelness at times but maybe they genuinely think we are lazy and if we just pushed ourselves a bit and got confidence we could do things. It is very likely that there are some that could fit in this ideal, given support who could get a job and keep it. Before I became ill I was always able to get a job. After becoming a lone parent I worked in a bar, did art GNVQ then BA, car boots, Safeway deli, Tesco 1 shift, back to Safeway hell, paste up artist/receptionist in a print shop, klick, assistant manager of 2 charity shops, doing counselling skill courses and self employed.

    In fact I was asked to come back to one place I worked when I was very unhappy working in Safeway with a supervisor from hell and boss from heaven. She used to say how calming I was and how she felt better when i was there, safer. Those words have often been there in the defence when my inferior side thinks who am I to think I can make a difference, I don't have a superior side to that one, I have one of reason that reminds me of times I have been appreciated for being me. I don't think I am amazing but I know I have qualities that could be used in the written work i do and the art and also in maybe workshops. I have talents and strengths that could be utilised if I were given support and some dignity when i am too ill to bathe myself and feed myself. Flexible care and flexible ability to reapply benefits if able to work in bursts.

    My dignity would be served if yes they took advise from my doctor instead of paying an atos assessor and the tribunal. My confidence is that I will become well enough to work again, despite the extra stress they are putting me under. It has made me have to find a way to make peace with stress. I am painfully aware of the criteria all the time of what proves fitness in their eyes.

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  35. I have had many different jobs as a RAF wife obviously I moved with my husband and didn't get the chance to follow a career I've worked in the armoury tea bar, NAAFI, a nursery, prontaprint, bar, unemployment benefit office (when pregnant and my dad was terminally ill and we moved back to Germany), mum, NAAFI, mum. I was often less well than most people have the privilege to take for granted. I did have more health and vitality bodily more often. I so appreciated those times, especially after I had my tonsils out and remembered what feeling well was like. I managed to go to college and run my home much better than than I can now without small children to look after. You know the state of my home Sue.

    I've managed more with less side effects this last couple of weeks but I have managed to eat a little more and more often better meals. I find it hard to sustain managing my health, so to be declared for for work was like rubbing salt into a big wound. I was overcoming anxieties, I was building myself back up this time last year. I had been suicidal the November before as it became apparent I wasn't able to do a whole day of study a week. After 5 weeks of being totally wiped out and unable to even have a cup of tea when i got home, never mind food, if I had managed to make it I was just too exhausted to eat. Added to that my sleep problems, I requested a psychiatric assessment as suicide was getting increasingly tempting, my dog who pees all over the place but loves me and is my only companion for the vast majority of my time, I couldn't take him with me and who would love him, he is difficult and annoying and has anxieties but oh so loving and cute. I was given a false hope of getting help making my home safe and dry and getting a support worker which didn't happen.

    It wasn't till after my medical that I finally got assessed and WRVS came in, the first one last November and never came back. I thank god in many ways that they didn't when I was again really suicidal after the fit for decision and the breakdown that took me several steps back in my recovery. Some help is not delivered in a way that eases stress and some do their best but even that is difficult to deal with. I had 2 other WRVS people come in around the time of tribunal which was just over 8 weeks ago. I need to reply to an email but can't seem to bring myself to at the moment and want to as I think he may worry about me and that he has upset me, which he hasn't. Sorry i am going on and on...

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  36. Jo - "The fact that job centre staff are receiving training in how to deal with the suicidal should be sounding loud claxons in government..."

    Yes, but the worrying thing is that it is the government who are responsible for this - The new guidance was issued to all DWP staff on 30 March.

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  37. sorry my post is so long...I had a triumph today but cried as well...I made my bed...I don't hurt as much as I usually do...I was thinking about this as i was making it. I try not to think too much about how if I was seen doing this, that and the other they would say i am fit for work, if they see me how I live they would just say i am lazy. I am hoping to bath before I sleep or I may sleep on the sofa as I want to be clean in a clean bed.

    I have been up since 9pm last night, I slept on the sofa. My bed was very dirty, it hadn't been changed because I hadn't been able, although I did something else last week as well and if I hadn't done that I could have made my bed instead. I have no idea if payback will come tomorrow or if I will have a relatively good day. I've had mostly pain lately without the extreme fatigue and I have not been able to sleep properly. I have come to a peace with this is the way it can be and I could improve i could get worse at any moment, without much notice sometimes, although there tends to be a build up. I constantly have to assess what I can do. Because they ignore what we can't do it makes us focus on it more and rises the stress levels, neither help us and can more often make us feel very much worse.

    They need to educate the public what living with illness and disability is really like but to do that they would need to understand it first.

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  38. First thought: the government clearly think in terms of the psycho-social model, but keep calling it the social model. Are they confused, oversimplifying, or deliberately misleading?

    I think the biggest problem is the government seemingly never accepting the idea that some people will get worse with (at least some kinds of) work. On the most general level, almost all health issues, physical or mental, get worse with stress, and all work involves stress.

    The government, whatever party, has been redefining people out of sickness and disability for a long time. We need to make sure we publicise what they're doing with PIP, and contribute to the considerations that are still happening with that; preferably make sure we publicise what has happened with ESA as well. The descriptors for that now say something along the lines of "reliably and repeatable" for pretty much everything - this is a clarification, as it was meant to be a generally understood point. 'Can' and 'Able' are meant to mean "without undue pain or discomfort" as well. On both points, ATOS's assessment training and software seem to ignore this. We need to get people to hear this message. One reason they accept the narrative about scroungers and malingering is that it gets articulated louder than our voices. I don't know how we do it, but we need to get our voices out there to more than just the intelligentsia. I'm prepared to put what spoons and skills I can towards this. We ought to be able to get all sorts of general interest groups to support us, like religious groups. There are probably people who could raise it with local religious groups (Quaker Meetings are what I know about) if we could support them in doing so. Students' Unions like to engage on nice lefty areas like this; religious groups like to engage based on compassion. It needs to be coming from groups who aren't just disability groups. There's some work going on from some of these, but not as much as their could be. If I had more support and resources, I'd happily try to raise this in some way with a national body for young adult Quakers I'm going to a meeting of next weekend.

    We can collect and write-up testimonials about the failures of the benefits and assessment systems, as many as possible, we can produce clear and concise summaries of points. Maybe we can recruit respected academics and medical people to rebut the government's points and those of their media stooges. So much of our discourse is limited to an internet echo-chamber of like-minded people; I don't know how we change that, but we need to.

    What legal frameworks could we use to raise money to do grass-roots and mass-media campaigning? What sources of donations could we tap? Campaign organisations have a little bit of an issue becoming charities, but charities can campaign as part of their work. Maybe a new charity could be set up with goals of enhancing the understanding and support of disabled people in society in general; then it would be arguable that even political campaigning would be a sufficiently appropriate means of meeting that goal. I have a fair understanding of lots of charity law, and I am well-positioned to find out more, from an existing familiarity with the landscape of Charity Commission advice and regulations. Of course, there may be options other than charity status. I don't know how political campaign groups generally constitute themselves. One plus for charitable status, though, is that it would enable or encourage charitable groups like religious organisations to support us financially with collections from members. Maybe JRCT would be a good source of funds, depending on what we'd do with those funds.

    I just feel like we're shouting, but not being heard by many, and not being paid real attention to by government. We need to get past that.

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  39. I have Asperger syndrome, a both complex, i.e. composed of many parts, and paradoxical condition, e.g. "Excellent rote or photographic to semi-photographic memory" but "Difficulty in remembering where items used moments before are located".

    According to the Equality Act 2010's definition, it is a disability, i.e. (a) P has a physical or mental impairment (see section 7 of CDLA 1678/97 and Sections 8, 9 and 10 of CDLA/2288/2007, and (b) the impairment has a substantial and long-term adverse effect on P's ability to carry out normal day-to-day activities (section C of the DSM-IV's diagnostic criteria for Asperger syndrome states: The disturbance causes clinically significant impairment in social, occupational, or other important areas of functioning) and yet I continue to be asked, "Do you think you are disabled?"

    The DWP's Disability Handbook's chapter on Autism and Asperger's Syndrome is woefully inadequate because it fails to describe fully the impairments and impacts thereof and furthermore, refers only to children.

    Despite my psychiatrist's requests for a social worker and a community support worker, a Social Services head-of-department, refused on the grounds that people with Asperger syndrome are high functioning and therefore require no support. His uninformed comment flies in the face of, for example, Judith Barnard et al.'s Ignored or Ineligible, a 2001 House of Commons Debate on Asperger Syndrome, a 2003 House of Commons Debate on Asperger Syndrome, the National Autistic Society's I Exist campaign and the National Autistic Society's guide to Social Care.

    On Tuesday the 17th of May I received the new ESA50 form: I am to be reassessed for Employment and Support Allowance. Despite having, and attempting to use, a copy of that which I included in the form which I completed in the October of 2009 - it took me 61 1/2 hours - I have, thus far, spent 37 1/2 hours on the new form because of executive dysfunction, e.g. Executive Function Challenges: without a simple 'if/then', 'yes/no', i.e. 'closed question' system or a pre-prepared script, I find communicating via any means all but impossible but because of ignorance among HCPs, Social Services, et al, I feel defeated before I begin. During 2009, a former support worker telephoned JCP to request an ESA50 in a form accessible to people with autism spectrum conditions (ASC) but was advised to complete said form on my behalf but surely that flies in the face of the psycho-social model of disability; if JCP cannot accommodate people's disabilities and the impacts thereof, how can the government expect employers to make "reasonable adjustments"?

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  40. In an attempt to assist my completing the new ESA50, I have downloaded and read both The Employment and Support Allowance (Limited Capability for Work and Limited Capability for Work-Related Activity) (Amendment) Regulations 2011 and theRevised WCA Handbook ESA (LCW/LCWRA)Amendment Regulations 2011 but so doing has only served to make it more difficult, for example, page 80, section 3.6 and paragraph 4 of the Revised WCA Handbook ESA (LCW/LCWRA)Amendment Regulations 2011states:

    "Occasionally people whose principle diagnosis is Panic Disorder claim that they have difficulty making themselves understood during an episode of acute anxiety. Similarly those with severe Chronic Fatigue Syndrome may claim that speech becomes unclear when they are tired. Consider carefully whether such claimants should be assessed under the Mental Function Assessment. You should consider their ability to make themselves understood most of the time by any means."

    but work-related activity may cause someone with a Panic Disorder acute anxiety and someone with Chronic Fatigue Syndrome extreme fatigue so either those responsible for the content of the Revised WCA Handbook ESA (LCW/LCWRA)Amendment Regulations 2011 lack the intelligence to make such a connection or they have another agenda.

    As I have written, I have immense difficulty constructing novel sentences but in light (or the dark) of the above, how do I communicate the fact to ATOS HEALTHCARE in a way that an assessor will be able to both understand and accept? I have already prepared my father, mother and support workers of what I consider my only option should I fail to convince ATOS HEALTHCARE/DWP/JCP of the severity of my condition but even were I to succeed, the new Personal Independence Payment hangs above my head like the Sword of Damocles.

    This response has taken me precisely 4 hours and 31 minutes to compose and I must continue working working towards completeing the new ESA50 form.

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  41. I am a mother to four children. I was a very active and busy mother until my divorce. I am married to my second husband. I started with aches and pain unexplained? in 2001. Gradually got worse. I used to use the gym everyday and keep fit. That gradually stopped. I was diagnosed with Fibromyalgia. I am Bipolar and Schizophrenic. I have worked in between having my children and around my children at school. Now I see myself as unemployable. I went for an interview at a local supermarket and was asked about health, the interviewers face changed dramatically when I mentioned my health issues, was I supposed to lie?! no hell no! I can't help my health issues. So I now run my own Business. I retrained as Jeweller/Silversmith and I'm self taught. I am a Glass Artist also. I work from home now and around my health problems. My health is so variable it's impossible to put my symptoms into 'tick boxes' The whole DLA forms and Assessments need to change to accomodate us spoonies. I have flare ups and they can last up to 8 weeks, where I am unable to walk, move because the pain is so severe. I have memory problems that really does affect my life. I have digestive problems that I fear that I may have an accident. I have mental health problems. I hear voices every single day. I use my work (Jewellery making, glass art) to medicate me. It works for me, my Psychiatric team say I am unusual for how I lead my life with my difficulties that come with Bipolar Type 1 and Schizophrenia. I use my mental health positively and creatively. The DLA has paid for me to retrain, it's paid for my equipment (ergonomic chairs, work stations) so I can comfortably work. I need to take regular breaks about every hour, they call it pacing. What employer out there would happily employ me? What if I have a flare up that lasts up to 8 weeks? The stress and worry of working for someone else will dramatically make my health worse. So I've created a job for myself. I have a blue badge that allows me to park closer to shops so I can live as normal as possible. I get disgusted looks for people when I park in a disabled space, because yes I look ok on the outside. I'm scared one day someone will challenge me.

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  42. I am terrified of all these cuts, my husband is my carer and he works from home also so he can look after me. I work when I can. My job is not physically demanding. I'm scared that I will lose my DLA, my blue badge because there are days where I do feel well. I just never know when I'm going to be hit with a flare up and for how long. I've forgotten what I was going to say after reading all the replies because of my brain fog :( I'm 41 and I've worked since I was 14 and I'm still working, when I can I'm doing what I can when I can and I have this fear nagging at the back of my mind that I'm going to lose everything. I feel ashamed being on DLA I'll probably be classed as one who is 'not worthy' I've not had a mental health episode for a while now so again I could be classed as well. But that does take away the fact that the voices in my head every single day tell me to do bad things, say bad things, this takes alot of energy and control to not act on those things. Everyone has an internal dialogue, well for me I have several more and when I'm not well I get confused which is mine and which is not. Urges like to call people C**ts and urges to hit people is that someone you'd want in your work place? How do I get around it? Music I have music on all day while I'm working or just pottering around. I cannot bear silence in the house. I even have to fall asleep with the TV on. This is how I cope with my symptoms of Schizophrenia, now some may say take the medication, yes sure if I want to become morbidly obese with Diabetes?? I'm already borderline Diabetes type 2. Take Risperidone? yes sure I'd be a mindless dribbling zombie staring into space how would that help? how would that be for my children? how is that helping me? Chuck some pills at me and forget about me? No hell no, I fight every single day with Fibromyaglia, Bipolar, Schizophrenia, Asthma, life, kids etc.

    May have to come back to this when I remember what I was going to say

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  43. Further to my previous point, charitable status isn't a no-no, it's just hard. If you have an objective that is well-served by political campaigning, then that's okay, as long as it's not an excuse for it; social campaigning is far more acceptable. So, an aim/objective like "to promote understanding, acceptance and welfare of chronically ill and disabled people, with particular reference to..." could work (depending on how it was finished). My recollection of the public benefit test details would identify that as a valid public benefit.

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  44. Apologies if this has already been said - on a quick housework break so didn't get time to read all the responses.

    ESA

    Its a good idea but done the complete wrong way. There should be 2 groups, but with different aims. First I would pull Income Support and Carers Allowance into ESA. The Support group should be for people who can't work and are not reasonably expected to get better, carers of people with lifelong care needs etc. The Work Related group should be for people who are expected to recover after a course of treatment, single parents etc. Those in the support group would be left alone - there is no point reassessing them unless there is a medical breakthrough etc for their illness - and that would be relatively simple to keep track of with a handful of pen pushers and cost less than repeated assessments. The work related group can be reassesed in a sensible peroidic way, i.e. when dependants change or after their treatment and recovering time has elasped, and if found able to work should be supported back to work, not beaten into it.

    The assessments need to change - I would say total removal of Atos, and some of their suitable qualified medical professional employed direct by DWP as the decision makers. Evidence would be taken from all medical professionals dealing with a claimant and deciphered by DWPs doctors. Such evidence would include details of illness/disability, available treatments, prognosis, expected impact of work, home-life etc. It may seem invasive but it would be far more accurate and dignified than picking up a pen or penny.

    The benefit should be paid at a rate that is dignified. This will help people feel beter about themselves, look after themselves and of course means they have more to spend and plumb back into the economy as the money moves around.

    Getting them back into work is a whole other problem - we need a complete overhaul of employment law for a start. Employers should be encouraged (through tax breaks or grant 'add-ons') to provide suitable working options for ill/disabled, carers and working parents - like job sharing and working from home. Everything is in place for that, they just need to be nudged. If people have more flexibility they are more likely to be able to hold down a job. And rather than punish those that can't work, we should reward those that can - give them a cash 'gift' for holding down a job for x amount of months etc rather than cutting benefits for those that fail. The carrot is always better than the stick.

    Are we just doing ESA or can I do the whole welfare system here Sue? I got ideas...

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  45. Dombed - All ideas fine. I may not use them for this, but you never know when they might come in handy. Also I sometimes find it's difficult thinking about one benefit and ignoring all the others. they need to interact and work together.

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  46. I'm struggling to keep up with all the comments just now, but will read all thoroughly later and make notes.

    Just one thought though, I can see real hope and positivity coming from some of you. It pays me more than any wage to see people finally beginning to believe that we can change this. We can you know. It just takes hope and belief.

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  47. are email comments going to be posted Sue?

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  48. If it could be changed that the Jobseekers allowance and all welfare HELPED people in to work and supported them to support themselves rather than sanction them into any job at all whether it is right or not for a disabled person say - Is counterproductive. To make employment work for both the companies and the country is the best thing for all - But there will always be some people who are unable to work for disability reasons etc - To make them scapegoats is not the way...

    For the govt to attack the weakest in society just shows that it is an uncaring govt - And does not teach the country as a whole how to be integrated and humane to each other. YES there are alot of disabled people whoa re able to work, but there are also alot who need help and who are not. We need to support those who cannot, aid those who want to, and encourage those who have lost their way etc. Work has to be something that someone wants to AND is able to do long term as for people who continually have to leave through being forced into - then illness forcing them out of - just doesnt work (costs more on atos medicals also)

    ATOS is surplus to requirements, and to pay them so very much - does not seem very cost effective.

    I hope that this govt will see the futility of ATOS and actually use the information that they already hold in peoples medical notes etc. The information on all people is out there - You dont need a silly tick box computer program to 'tell' you how ill/well people are as people do not fit into these boxes, disabilities also do not.

    Why can they not just look people in the eyes and TALK to them - as humans. It would give people a much better view than people sitting there quaking whilst atos ignores them and just presses buttons on a computer.

    Computers are not always right! Hence all the error messages I keep getting LOL

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  49. I certainly will post email comments if the sender is happy for me to. I don't have any in inbox though?

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  50. Why dont the employers change their views on disabled people, after all we are more likely to be in work with a cold and flu than normal people. It just wont happen apart from remploy who have a factory near to where i live that is set up for disabled people, then after so many months you are cast back to the wolves. I fear we are fighting a losing battle. The human rights act seems a great way forward as well as grabbing the headlines and making our voice seen as well as heard is a good option.

    anon

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  51. re email comment - I sent one at around 1 o'clock - check your spam? Will re-send it now - 15.43

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  52. Thanks Sue. I'll try to be brief.

    DLA and carers.

    Currently DLA is very had to get and because of its passport nature, the lack of an award for DLA restricts access to vital care for many people, for example - I have caring responsibilities but am repeatedly told by DWP that if I reduce my work to care I will get no help, and treated as 'workshy' and sanctioned with absolutely no benefit entitlement unless the people I care for receive a certain amount of DLA, which they say they are not disabled enough to get, and also use the fact I have to leave them uncared for to go to work (which is because I had this job long before the care needs arose), as evidence for not awarding DLA. Catch 22. I get to choose between letting them die of neglect or starvation.

    If its happening to me I'm not going to be the only one.

    DLA needs to be more accessible for people. Its far too hard to get an award and often relies on the use of the 'correct termiology' rather than actual facts and, as with ESA, Atos are used to discredit claims. If people incur extras cost by being disabled they should be helped, if people need care they need care.

    The criteria for awarding DLA needs to be heavily relaxed - and the farce of PIP needs to end now, because it will only exacerbate the existing problems. We need to stop it being the only passport for all the other things too. Disability has far more degrees than the system allows for - all individuals do not fit in the same 3 boxes and the DLA system needs to reflect this.

    Carers need to be supported more - they save the state millions a year. Flexible working or leaving work to care must be made easier, and if DLA is not made more available we need to stop using it as the qualifier for needing care - maybe start using an independant statementing system instead. Just because you don't fit through one of the DWPs hoops doesn't mean you don't need help.

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  53. DAMN - EMAIL IS suey2yblog@hotmail.co.uk -COULD ANY WHO SENT SUBMISSIONS PLEASE TRY AGAIN, SORRY.

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  54. I believe that all claimants that are currently receiving benefits at such time should be left on them, they have already been judged eligible and if the government are going to try to take some people off of them then the government should be challenged in court.

    I think we also need some kind of sensible policy for new claimants so once people have been judged eligible for benefits they need not live in fear of them being removed because of some barking mad Atos policy. In fact it is time Atos was shown the door, I hear Atos are getting pretty "defensive" these days too!

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  55. Another point, if there are over 2 million unemployed and over 1 million 'off the sick' why dosn't the goverment proclaim in law that for every 3 jobs you have open you MUST employ a disabled or chronically sick person.

    Thats what they want, to 'support' us so wheres the money to fund that for employers, wheres all the PA and assistants, adaptions, flexable working time and money going come from? With all that and tax credits, child care costs, its not going save anyone any money. Isn't that the real point?

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  56. I still reckon if they wanna fiddle the jobless figures (like they like to all the time) this ain't gonna help people are being laid off all he time due to this economy so adding millions of disabled people into this will not help.

    Those with incurable lifelong conditions should just be pensioned off if they wanna fiddle the figures - dont know why they fiddle it but they seem to like to to make it out like there are less jobless - we all know its rubbish and just figure fiddling

    If this govt collected all unpaid tax (including that 6bn thy let off that phoen co) they would not be in such a mess - they cant expect to let off the ones who have billions in profits and the poor people have to subsidise it - Thst is ridiculous. Bring in robin hood tax - that will help no end!

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  57. To the anonymous who lost the post - mystery solved!! It's there! I took it out of spam a while after you posted it - it's at 12.00!!

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  58. Does anyone have any suggestions for how a totally different system might actually help them? Ways of doing things completely differently that would work around your disability or illness?

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  59. "A welfare system that works" ? Why would our betters and masters want that ? They want you dead unless you're contributing to their profits or furthering their careers and upward social mobility by contributing to the profits of their masters.

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  60. Well then how do we "contribute to their profits" in a way that works for us? Many have commented that the day they became unable to work was like a death. I'd like to work, but I know what stops me and what it'd take to help me.

    I don't mind being profitable along the way as long as I profit too ;)

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  61. YOU DON’T LOOK SICK!!! No I don’t. It’s hard to explain to someone when they have no clue. It’s a daily struggle feeling sick on the inside while you look fine on the outside.

    I contracted Viral Encephalitis in 2006 which has left me with acquired brain damage, severe asthma, depression I also have osteoarthritis in my spine, and both legs however I am as my husband says partially bionic as I have had a knee replacement all this at the age of 43.

    On some days I can look at objects and know the name of it in my brain, but somehow you could say that it gets lost in translation when I have to speak as it comes out as some garbled nonsensical word.

    The DWP said that in their view that I was fit for work and I did not need DLA.

    These people need to come down from their ivory towers and into the real world ...........

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  62. Thats the whole issue either they want to throw us off benefits to save them money or they want us to work. They dont understand for many people who could do some work it will cost the system more in terms of other support they need and top up by way of other benefits.

    Does our great PM want people to contribute but only if this is economical profitable to the rest of society or if we are able there is a big difference.

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  63. The new policies that I wont to set out for the future for those that claim sickness benefits DLA/INCAPACITY /ESA/

    Firstly in that in future all examinations on peoples health will be determined in their home buy their own doctor who will be assisted by their NHS care/support worker and also by a FULLY QUALIFIED independent doctor (ATOS)

    All hospital correspondence will also be available so that their are no errors being made with the medical assessment also in attendance will be a fully qualified benefits adviser whose role will be to fill in all forms and to make sure that all documentation and forms are fully completed and so that the right benefits are being paid to the right people to avoid fraud

    The proposal's that i have outlined above leave very little if any room for error and i recommend the above to this house

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  64. Since my husband was made redundant three years ago, he hasn't had any luck at all finding work. I think employers need to have more incentive to hire disabled people. I don't think all this stuff in the media portraying the sick and disabled as lazy, scrounging cheats has helped. What employer would want to hire someone like that? My husband does volunteer work, but when someone is disabled, I think employer's just view this as even worse because it just looks like no one wants to pay you to work for them so why should they?

    Why do we even have discrimination laws when they aren't being enforced? Not only for the disabled but for more mature workers as well? If the government can't at least crack down on these laws or be bothered to change employer's views on disabled prople in the workplace, then maybe there should be nore initiatives to help people start up their own business.

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  65. Fourbanks - But that's their stupid system and we know that doesn't work. Assuming that some should be supported fully on benefits, what about those who can and would like to work? How could we do that in a way that works for us?

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  66. Please people, CONSTRUCTIVE answers here. Yes, we know the system sucks, yes we know they seem to want us to fail. Preaching that one to the choir. So, sometimes the best way around is THROUGH; propose what would work for you personally just as a pie-in-the-sky idea. Let's try to stay on topic and not sink into the same posts of how-screwed-we-are over and over again.

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  67. I don't know if what I have to say has been posted, as I don't have the time and am in too much pain today to read all the comments.

    As someone who would love to work, but knows that being on strong opiates, injections which make me pass out and using an O2 tank no employer will even consider hiring me. O2 is a workplace fire hazard and, like the modifications I needed to make to my home, the workplace would need to be modified as well.

    And that is one of the biggest obstacles facing sick and disabled people: companies aren't willing to make changes to the workplace or allowances for peoples' sicknesses as it isn't good business sense (for them) and an unreliable sick person will not be as profitable for them as a reliable able-bodied person.

    The government wants more of us to work, yet they are not willing to give companies incentives to hire disabled people. In fact, they are thinking of removing workplace protection for disabled people under the guise of "cutting red tape".

    So they're kicking us off benefits while at the same time making it harder to find employment. And I am sure they are aware of this. It is not about "helping" us or anything of the sort. It is about saving money and to hell with the consequences for our most vulnerable.

    This may sound conspiratorial (and I am not conspiracy theorist) but I do believe there is now a concerted effort in society to either underfund or simply get rid of most things that are not "financially viable", or in easier terms, profitable. Many multinational corporations are richer and more powerful than some nation states. Now we are being told that these companies taking over our services is the only way to save said services. Of course, these companies will squeeze everything in order to make a profit.

    What we are seeing is the takeover of society by finance and big business. When everything is based on the bottom line, profitability, then supporting the sick and disabled is not viable. What is happening, IMO, is human beings are now being treated based on how much they contribute financially to society. If you or I are not well enough to work, then we are classed as "economically inactive" and are expected to be thankful for the tiny scraps we get.

    This will not do.

    We have tried letter writing, blogging, marching, engaging the media ad nauseam. And yet the media continues to smear us, the government continues to release wrong and misleading statistics about us. ATOS themselves are not adverse to threatening disabled people with legal action for simply telling the truth. The government, the media and large parts of society are now saying, in no uncertain terms, that they wish to wipe their hands of us.

    I do not say this lightly, but I do believe we cannot go on like this. We are by and large being ignored. We must push harder. We must be willing to take risks, even to our own health, to ensure the sick/disabled of future generations will receive the support they are entitled to.

    We must become more radical. We must shout instead of whisper. We must be prepared to take direct action. We must singe those who wish to destroy us with the fire we all have in our bellies.

    If we do not fight harder, stronger and with every ounce of being we have, then we are doomed.

    And I do mean this.

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  68. [QUOTE]Sue Marsh said...

    Fourbanks - But that's their stupid system and we know that doesn't work. Assuming that some should be supported fully on benefits, what about those who can and would like to work? How could we do that in a way that works for us[/QUOTE]?

    My proposals sue are not being implemented at all
    Medical assessments are not carried out in the home neither is a benefit adviser filling in the forms for accuracy all of this should be done by all of the NHS staff/doctors ETC that have been dealing with the patient over the years
    The ATOS doctors role should be just one of supervision to make sure that all of the correct procedures have been carried out on the government's behalf

    As for your other point i am not qualified to make a judgement on those who are sick and disabled who wish to work

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  69. Kat11 - That's an interesting idea about businesses.

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  70. Fourbanks - I just think the whole system is screwed. I don't think we need ATOS or assessments at all but your ideas of consultant led assessing is good I think.

    You DID work in the Bank of England, so I'm sure you have more experience than most of us on how we could work or set up our own businesses in a way that would serve the state AND support and help us?

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  71. I posted a rather long comment but it seems to have been removed or just disappeared or something.

    Don't have the energy to type it all up again, but I'll just say that we need to be more radical, more forceful. We need to be in the front and leading a campaign for greater rights and respect as disabled people. The welfare changes should, ideally, be run for and by us.

    I don't know how this can be achieved or if it even can. But our current tactics, and bless every one of us who fights, are simply not working in the way we would hope.

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  72. I wish I was well enough to work. I've been on Incapacity Benefit for 10 years, and early on in that period the requirement to submit medical certificates was waived in recognition of the fact I have a progressive neurological condition.

    Ironically, in the first few years of the period, if someone had waved a stick and said "You HAVE to work, or else", I could have done some limited hours. Perhaps 4 or 5 mornings a week, or 2 full non-consecutive days. Now? I'm incontinent, I have worse spasms than before, I have virtually no mobility. Worst of all - and this is completely unrecognised by all the assessments and appraisals - I am tired all the time. This isn't tiredness as normal people experience. This is crippling fatigue caused by all and any activity, including watching TV, being on a computer, eating. ESPECIALLY eating. I am so tired after eating lunch that sometimes I just want to die.

    How can I do any work? There are no solutions that would enable me to work. I've not yet been called for an "assessment" but the stress of facing it has caused my condition to deteriorate. I'm noticeably worse than even a year ago. The rate things are going, in two or three years I shall be little better than a physical vegetable.

    I've grown up in a welfare state. After working and paying contributions for 25 years, then developing a crippling, incurable, worsening condition, I had reasonable expectations that while not entitled to a life of luxury, I'd at least be entitled to a minimum level of basic support to see me through to an early death. Yet what's happening now is making me wish for death to come sooner. What have we come to?

    As I say, I wish I was well enough to work. I'm not a skiver. I'm not a scrounger. I'm not a cheat. But I'm dying and I thought that dying in England would be a supportive environment where I could see out my final days - not in the lap of luxury - but at least guaranteed food, clothing, warmth, and freedom from stress and worry.

    I'm ashamed of our politicians. I despair of our media. I am hurt by the apathy and unconcern of my fellow citizens.

    I've not been very constructive. I have no ideas, even mad, off-the-wall ones. All I want is to glide with dignity and serenity towards that dark void where we're all headed.

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  73. A couple of thoughts...

    Firstly, a lot of disabled people who can't work do contribute to charities and voluntary groups - isn't this a resource for the much-vaunted 'big society'? Sure, we aren't doing things that can replace public services, but firstly, we might be able to enable other people to by doing support work, and secondly, the big society, if it exists at all, shouldn't be about volunteers doing the work of government, but rather making everyone's life better and easier. So why should the government not see this as a yield, and worth the modest payment of out-of-work benefits.

    The other thing that often comes to mind is the possibility of a disabled workers co-operative working on things that they can take over from each other on one another's bad days, I particularly see it working with programming and web design work because that's what I do. The difficulty would be getting enough work (in competition with normal businesses) to make it viable for the number of people you'd need for it to be practically viable. Of course, while work is sparse, people might be able to work on programming or design products that can then be sold (preferably as services) to clients in the future. I'm sure a group of disabled people could come up with the next facebook, though getting venture capital to launch a fully scalable product for public use might be hard... and that sort of business would be able to involve disabled people other than programmers, you need illustrators, designers, admin, testers, PR... and maybe the social cachet of supporting such a group might be worth it to some clients. Who knows. Feels like a pipe dream to me, though.

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  74. What about establishing a charity system for helping disabled people get into business which could be supported by lottery funding? Gods knows enough people through money away on lottery tickets, if I remember correctly there's actually almost always a surplus which goes unclaimed.

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  75. [QUOTE]Sue Marsh said...

    Fourbanks - I just think the whole system is screwed. I don't think we need ATOS or assessments at all but your ideas of consultant led assessing is good I think.

    You DID work in the Bank of England, so I'm sure you have more experience than most of us on how we could work or set up our own businesses in a way that would serve the state AND support and help us?[/QUOTE]

    Indeed sue i can try to put something together :)

    I personally agree we don't need ATOS or assessments but the government does all i have tried to put forward is the subtle alternative of have the assessments carried out in the patients home where less stress will be encountered and keep the government happy

    I have always maintained that the patient should never have to fill a form out as that is counter productive as the vast majority of people are not able to do so in a way that is meaningful and gives a true assessment of someone's ability to work full time in which he or she feels secure

    I myself did a work placement for one month in 1990 for the DWP to see if i could get back into the workplace at gatwick airport in immigration and security and with much regret i failed the DWP said i failed and i thanked them for laying the experience on for me

    The job itself was just looking at people and making judgements as to who should be stopped and questioned very simple indeed but as i say i failed

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  76. They could save loads if they listened to and believed a persons GP, consultants etc, if the medical person says the condition will/ could improve in 6 months/a year etc then contact the claimant in that time frame, if condition is progressive and will not ever improve then stop harassing that claimant. This does away with the need for ATOS, saves money on appeals and constant re checking of people when nothing has changed.
    I worked for 25 years with this condition until I eventually had to stop, I'm not going to improve, I'm not miraculously going to be able to work again at some time in the future so why waste money keep testing and retesting me?

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  77. Hi all, reading your comments has reminded me I'm not alone with regards to this ugly situation we all find ourselves in. I have suffered from chronic depression since the age of 14, and now have anxiety/panic attacks in addition to this. This situation has become even more of an issue since I had my first nervous breakdown in 2000 (second in 2007) which added panic disorder to the mix.

    Like all of you lovely people I have found myself being judged both by the DWP, employers and the public. After my last breakdown the benefits agency left me with nothing for 8 months, then when I finally broke through their incompetence they sic ATOS on me (may that company be cursed for a thousand years and their buildings razed to the ground!). Of course, ATOS had me declared fit for work , despite the fact that I was still having 5-6 panic disorder attacks a day, was a raging insomniac and suffered from muscle,joint and ligament pain thanks to the tremors I have (and still do).

    Now don't get me wrong, like you all I WANT TO WORK, oh so much. I have spent 8 years on my academic career and am currently all but one unit away from my second masters. I am a conservationist, biologist and environmentalist; I love to spend time in nature, I enthuse about saving endangered species and other environmental issues; I try to contribute to surveys, there's nothing I like better than finding myself looking at a insect I've never seen before and chasing it down in a key. I would love to do a PhD (I have the brain but not the grades thanks to the protracted periods of depression, nervous breakdowns and the complications of life)which means I either risk my health working an 80 hour week to self-fund or give up the dream.

    I am currently looking for work, voluntary, paid, whatever as long as its outside. I don't care if I'm surveying, building a drystone wall, making hedging, checking mammal traps, most days I can get on by putting on my supports, grabbing my walking stick (I can get wobbly on my feet if the antidepressants are causing a zombie day or my muscles are bad) and being allowed to go at my own pace. However there are days when the pain is too much or the black pit is right behind me. I have taken the brave decision to not hide my health issues (for an anxiety suffer this adds to the load) but feel I am losing work because of it. I also feel I am getting judged as the mental health issues have been responsible for large gaps in my work history as well as the fact that because of anxiety I do not interview well.

    What do I need from a (potential)employer? Understanding. For them to look beyond the fact that I yammer and forget what I was going to say at interview, an acceptance that there will be days that I cannot move much out of the chair let alone work to their often stressful deadlines, We could call them 'report- writing days' as this is what I tend to do on bad days anyway.I'm not lazy; I have worked 60 hour weeks before.

    As for welfare state; I would recommend that the DWP remove the ATOS blot on the landscape and respect the doctors opinion as this has come from a much more intimate, frank and educated perspective than someone who is paid to refuse applicants on trivial grounds and twist answers.

    People on Disability benefits are in the vast majority not cheats and fraudsters, they want to contribute in any way they can; permit them the funds to live, offer them support to do what they can and the best they can with the life they were given. It is worth just as much as the office jockey tax payer the government likes to kowtow to.

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  78. Unfortunately I didn't do very well at school (I'd started to go crazy towards the end of my school days due to years of being severly bullied and being a reviled outcast).

    So I did low end menial agency work. Lots of warehouse work lots of fetching and carrying and carrying some very heavy stuff. One of the things that made my mental condition worse was the stress of temporary jobs and the constant insecurity. I needed some security but there were very few secure jobs at the bottom.

    So my life during my 20s was work for a few weeks and then sign on and wait for the next job, I kept getting sacked from many of my jobs because of my mental problems; I kept making mistakes and had trouble concentrating. I eventually had a breakdown under all the pressure of all the insecurity and coping with working with a mental illness.

    What would help me is a low pressure secure job that paid a living wage.

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  79. OT

    @nanobot

    Not sure if this is up your street, but since you mention your school experiences; I had this message through an online group today:

    I am Trainee Psychologist conducting an in-depth study in this area [being bullied at school] in
    the UK. I would like to hear from those interested in sharing their
    experiences of how it has affected them as adults. The aim is to get
    more information and initiate more research into the area to help inform
    society and health professionals of the long term impact of being
    bullied as a child. By doing this research I want to give a stronger
    voice to the area that has not been researched enough.

    If you are interested or want to find out some more information please
    do not hesitate to contact me. My email address is Lisa.Da-Silva.1@city.ac.uk

    Travel expenses will be reimbursed and confidentiality as well as
    anonmity is guaranteed. The research has been ethically approved by City
    University, London.

    ----

    Sounds interesting and I'd take part myself but even school is eclipsed by my aforementioned experiences in my home life, so I don't think I'd be much use.

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  80. If i may just add sue my role at the bank of england was just as a personal servant to the governor and directors so as i said above not really that qualified in bringing about a policy in which will please all
    When those who fail their aceessements they could be like me undertake a DWP placement for one month and at that point the employer can say how it all went if it failed as in my case the benefit can be restored but if it should go well then that's great news indeed and the person can go on working there

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  81. I don't think the politicians come up with these inhumane policies because they just don't understand, I think it's because they simply don't care. The psycho-social model is just a cover story to justify what they want to do. All they care about is reducing the welfare bill to the bare bones, if we are left completely destitute, they couldn't care less.

    I think that the politicians feel the same way about us as most people feel about cockroaches.

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  82. Nanobot - That could well be true. I believe that it is.

    Those who suggest doctor led assessment are of course right. The reason the forms and interviews are so degrading is to deter people from claiming. A fair system would mean many more qualifying and they don't want that.

    The trouble is, that's what we're working with. Soon, many of us are going to be victims of far worse sanctions and with the way politicians think and judge illness and disability, we will never change it.

    That's why I think we need to propose suggestions so radical that they turn welfare on it's head. Why even think within the constraints of a system that doesn't serve us at all? Isn't that like saying "Well, we don't like starving, so give us a loaf of bread a week"

    The budget is tens of billions guys - why just say "OK you're sick, we'll pay you to rot or we won't pay you at all?

    why not say "If we use those tens of billions to empower and support and educate and inspire and we LISTEN many of us could have better, more fulfilling, more affluent lives?

    Why not pay those assessed as incapable of ever working again a living wage? If the Universal Credit cap for a family is 26k why should sick or disabled families not get a much higher standard of living?

    Those of assessed capable of some work, why does that have to mean a nine to five job or even anything resembling it? Why can't we work when we can work doing something we love? Why can't we create something beautiful in our own time and be able to sell it for a high end market price? Why can't we pool our infinite skills built up over decades of successful careers to provide consultancy or support?

    Why shouldn't the state support us PROPERLY through the bad times so the insecurity is removed, then switch that support to employers during the good times, making it easier for them to employ us?

    We can think differently, we don't have to accept anything like their limited dogma.

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  83. The big society should mean everyone supports everyone else and the weak are helped by the strong. If this is what Cameron wants then we have to help him to fulfil his dreams.

    In that we have to have a self sufficient kind of society. In that I am saying that the entire country and everyone within it should ALL be in this thing - Not just the poorer people - The richer should also be in this - After all is that not what society is?

    Maybe some disabled people could go into schools and help kids with reading, tho that i am assuming would bring police checks in to it cos of kids etc Hmmm. In that case there are many adults that have need for help with reading and writing - Maybe some of us could put something back into society by helping those people with their needs in this manner. For a shorter amount of time maybe some of us could do this.

    Give a minute, Give an hour. Helping others to empower.

    To be allowed to survive in the Conservative world we have to find a way to make ourselves seem worthwhile - I know we ARE worthwhile as we are human beings and we should have some Human Rights but it does sem as if the Govt have forgotton that humans all hold worth whether they pay taxes or not. Every Human being holds worth, and every human should be allowed some dignity, even if they are not able to hold down a 40hr per week job!

    It is a shame that we have to think like this to explain our own worth to them. But if we are unable to use human rights laws then we have to somehow show then that we do hold a worth within us.

    I hate to feel so worthless. But I am desperately trying to think of a way that they would stand up and listen to us and see that we ARE worth helping, and we ARE worthwhile being on this planet. They do not need ATOS. They should bring on board true disabled people who understand how these things affect us.

    There HAS to be an answer - There is usually an answer - You just hafta search real hard for it sometimes.

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  84. That's a great comment Anonymous. Come on guys - really think differently - how could we do it?

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  85. One idea (originally mooted by someone else, not me) is for disabled people to be trained to undertake PIP assessments. Obviously disabled people wouldn't automatically understand other people's impairments and conditions, but if they were trained they would at least understand something of what it means to be disabled. This would improve the reputation and acceptability of the assessments as well as providing employment for disabled people. It would certainly be a whole lot better than having ATOS doing the assessments (not that they've been chosen yet for the PIP assessments, as it's early days).

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  86. There are only a couple of ways that come to me to help them to help us...

    1. We have to save them money - Ie make ATOS no longer needed. We hafta make ourselves seem like a money saving thing - not draining on their precious funds. How will we achieve this without losing our dignity in this?

    2. Make them money - Offer ourselves in our own areas as 'ATOS replacements' Some of us are more able than others and could do this. Plus if there were enough people per area - If someone was having a spoonless day there might be someone else to take their place.

    OK - even to me that doesn't sound like it would work :-(

    I just feel the answer is in a kind of Disabled Peoples Consortium of Talents - Just because you are disabled does not mean you are a brainless fool. We ALL have gifts - All of us.

    I will continue thinking of an answer - Sometimes the most simple things are looking you in the face - But you dont always see them until you open your eyes.

    We will get through this - And we will do it together!

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  87. There are lots of things we can do at home at times when we're relatively well. The fact that we're all contributing to this blog discussion proves it. Many of us can do work which can be done on the computer in our own time, and submit it when it's done. We can write, we can think, we can read. There must be jobs that involve those things - writing policies, creative writing.... The internet enables us to seek input from others, just as you're seeking input from us, Sue. Most of us do worthwhile things in our lives, it's just that we're not paid for it. I help my local authority write leaflets for service users and I also organise the care for an older neighbour by holding her care budget in the bank account, paying the bills etc. These are worthwhile tasks which might be paid in another context but which I do unpaid (the fact that I have a local government pension helps so I realise I'm privileged). Not sure if this helps but I do think that the idea I wrote about disabled people being trained to do PIP assessments would be a good idea. We can't be any worse than ATOS and we'd probably be a whole lot better as we understand many of the issues.

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  88. I think NOW we're cooking on gas!! I think the Disabled People's Consortium of Talents is very interesting.

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  89. I attempted to write a response on Sue's blog itself, with link references to Green Party output on welfare reform. That exercise took me most of an hour and was met with the awful 'preview' result of linked page content ending up in the message window and with no apparent way back to the body of my message.

    So I will recommend that Sue and her blog readers Internet search
    "Green Party" "welfare reform"

    Alan Wheatley
    ESA tribunal victor and member of Green Party Benefits Policy Working Group

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  90. Sorry, and I thought Jane's ideas were surely the kind of lines we need to be thinking along.

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  91. Anonymous - I think you do have something there. If there were enough disabled people trained in each area there should be cover if one person can't turn up to do an assessment. After all, we would major on looking at letters from people's own doctors and other medical professionals, rather than doing the whole medical assessment ourselves. In my view, the medical aspects of the assessment should be an assimilation of the evidence from the person's own doctor and other medical professionals involved with them, and the assessor's job would be to look at the impact of the medical condition on the person's ability to carry out certain activities. This would be much better assessed by a trained disabled person who comes from a standpoint of having a much greater understanding of the issues people with impairments and long term conditions face. Just thoughts, anyway!

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  92. Nanobot - A comment from Jan directly to you went into spam. I've just hooked it out, so if you look up thread you should see it.

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  93. I think to start with we need a Solicitor type person who can tell us abotu our Human Rights in this. Time is against us. If we could take the Govt to the Human Rights courts it might buy us enough time to really think as a whole. We have to all be on the same page in this so that we know that everybody is working together with one aim so we need a plan of action - What exactly we need to achieve (we cannot fix all the problems of the welfare state - we can truly only focus on a few things - my choice would be ESA / DLA and one other maybe) safeguarding the things that the disabled need most (NHS would be in that also i guess)

    If we could find legal representation who would do this free on behalf of all disabled people of Uk - Then we know we could take steps forwards to state our case. now they can hapily ignore us - The moment we put a court case in front of them - They hafta start talking and stop lying. In a court of law - every lie they have told will work against them! That is one positive thing on our side - The fact that they are total liars.

    So... If anybody knows of a lawyer who deals in this part of the law who would take on a caes with multiple people (as in standing up for many thousands of people against the govt) that would send a very strong case that we will NOT just lie down and play dead - We would then - with help - know all our rights, and how to achieve fighting against this wrong they are doing to us.

    We will NOT take this lightly and they will rue the day they EVER tried it on with the disabld

    UNITED WE STAND - And we WILL stand against them (metaphorically as some of us are sitting but ya know what i mean)

    Ok outta spoons in agony can stay no more

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  94. Childcare for special needs kids in my area:
    After School:Nothing for over 12s exists in my locality for any child- mainstream childcare or special needs.
    Holiday Childcare: one scheme exists but it is under funded so no reliable places available- sometimes you get the number you ask for if you're willing to accept any day and are only after 2 days sometimes you are lucky if you can get anything at all (some weeks there is nothing)- if you request specific days (such as would be needed if you worked) you reduce your chances of getting anything so are unlikely to get your child in even once a week.
    Funding is short term and charitable funding only so unreliable and it is surviving one holiday to the next under constant threat of closure due to lack of money.

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  95. The one main issue I have with becoming an Atos assessor is we're essentially deciding to sleep with the enemy; let us not forget that the whole goal of this system is to cut 20 percent of the people claiming, whether they claim legitimately or not. Do we really want to do that? Honestly? Join the other side just to save our own skins? To be honest I almost imagine that's exactly what they want us to do - like back in the day, recruiting Nazi Youth to get them to narc on their own family members for the sake of power. That worries me.

    The Disabled Consortia sounds a bit more viable, personally, at least as far as perhaps becoming an independent sort of business group - but at the same time we're still facing the same problem of no one wanting to hire us because of the "disabled" tag, regardless of whether or not we have people in every single walk of life to take on work.

    Now I used to do home typing - there is software out there which will completely shred and destroy files which contain sensitive material (I did work for the MoD and I had to have this installed). That's where the computer folks come in, surely - and I know we have a lot of IT people who could perhaps set up servers and get ahold of software.

    What about people who aren't on the net however? Well I think it's really important to get computers and accessible software to people (and there are charities who can help with this). Again, the idea of establishing a charity system which perhaps could take in unwanted computers, we get some folks to fix them then can distribute them elsewhere.

    Online accountants, epublishing editors, website designers, server folks who create and upkeep them, home typists - that's just the stuff off the top of my head. Everyone could even get a cut provided you made yourself available to work, and this might give people a vested interest in trying to advertise it a bit more. Get enough people together and there's more than enough work for everyone. At least when doing this folks can apply for tax credits to start, and then possibly can branch out into crafting things - selling online and then perhaps getting dedicated people to sell wares at shows.

    There's a way to make it happen. Just need to be able to herd the cats to make it get there.

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  96. I don't understand why just the social side of disability is taken in to consideration. The physical side should also be looked at. Else why bother with the phrase "physically disabled", and also "mentally disabled" (okay, probably not politically correct terminology, but my brain is refusing to co-operate properly at the moment).

    It's all very well, for example, saying that a person in a wheelchair has difficulty in accessing transport and that businesses need to make 'reasonable adjustments', but nothing at all is considered about how much physical pain that person might be in, how tired taking their medication might make them, how they can't concentrate to actually make the journey in the first place due to chronic pain and fatigue. Or the fact that they might soil themselves!

    I think a holistic approach needs to be taken by those assessing. Doctors reports, as well as those from other bodies involved with a person should all be taken in to consideration; specialists, therapists, social workers and people that see the person on a regular basis including relatives or care home staff if they're in one.

    I also think all people who apply for ESA should be put in to the support group unless they've expressed an interest in getting back in to work, or starting work. Only then should they be placed in to the WRAG and given expert help and advice, maybe work experience in companies like you used to get in school depending on their qualifications, or help with getting new ones. All this should be done at the person's pace, not glued to some target driven system. There should also be dedicated advisers to help those that want to start their own business, giving advice and help on how to set one up, finances and everything else. If a person finds they can't cope with work, or their condition worsens then they should be placed back in to the support group.

    I think the new PiP is flawed on too many levels, and that it needs some serious re-working to make it even halfway suitable.

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  97. I've been doing some pretty thorough work analysing government policies, statements, draft regs and stuff on the Welfare Reform Bill, as well as the Bill itself. I'm muddling along trying self-employment (still not profitable), and I was working on an MA until I got a bit worse recently. I don't like to consider myself as not fit for work, but if I weren't still trying this self-employment, I'd have to go for ESA - but that wouldn't make me less capable than I am now. I don't know if I'd meet the descriptors, but I reckon I ought to. But I am capable, on my own schedule, or a variable amount of fairly advanced work. One current module (in process of doing coursework) on my MA is Policy Analysis. It focuses on education (what with the MA being in Educational Research), but really, the theory is all pretty transferable, and it does include political influence on theory (as distinct from evidence-driven, although they tend to be mixed), and policy as a form of discourse. Big applicable element to ESA is the distinction between policy as-written and policy as applied, as the ATOS assessment clearly makes an already bad theoretical assessment even worse in practice.

    Hey, maybe something for some of us would be to form a think-tank. We could easily do the kind of work they do, between us, and that work can be done from home and with the internet; the only hiccup would be where to get funding. Who the heck funds think-tanks anyway?

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  98. You want lawyers? You've got lawyers:

    http://www.dls.org.uk/

    Run by and for disabled people, and probably swamped right now under the sheer volume, but there they are.

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  99. Aspie Mum - So as Oya's daughter said, childcare - especially for special needs children - is a big issue limiting our ability to work?

    Anonymous - Everything you say is true. I really hope someone will take on the legal side of things for us. It needs very deep pockets so would have to be sponsored by a law firm or very wealthy supporter or very rich charity. This is the big problem.

    So, whilst I realise we need that angle, we need to help ourselves. Now.

    There just ISN'T much time (though I'm assured that much of the legislation will have a very tough time indeed in the Lords as there is more cross party support)

    We have to change the way they think and do it fast. We have to go with what we get and somehow find the spoons to solve problems they just can't be bothered to.

    Forget ATOS and assessments, we need to write our own futures.

    We can you know - we've just been told for so long we can't think this way, it's hard to remember how.

    If it helps any of you, pretend the current system doesn't exist at all. Start from scratch.

    How would you build a system that works?

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  100. Think tanks are funded primarily by the corporations which want them to prove what they're doing is right. Government, corporate motives, and so on. I would say the Green Party could definitely use a think tank but again, funding is the big problem. Still, the thing about the parties right now politically is everyone still thinks the Big Three, but sooner or later the Green Party is going to have to be acknowledged. They have very humanitarian viewpoints which would certainly suit folks like the ones posting here - the problem is they need the data to back it up otherwise they'll get shredded alive as being total bleeding-hearts.

    We have some staggeringly intellectual people among TBoB and on this comment thread; I would suggest perhaps offering at some point to put forth some models toward the Green Party and perhaps gaining a bit of clout with them as well. Yes, I know, political party stuff can be messy but that's pretty much the main think-tanks of the UK.

    Whilst non-profit the thing about think tanks is they can be tax exempt as well, I believe.

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  101. On a human rights basis, there isn't likely to be much that can be done in terms of domestic law, except perhaps by some deep work on the European Convention, and you'd need someone experienced to understand what's a realistic claim under that. That's sort-of international anyway, just it's been incorporated into domestic law. If you really think there's possibly some ground to be made with Human Rights, then we really need an international expert in relevant areas to work on it for free. Tough ask, but I might just have some contacts who might have contacts... I know someone who's senior in an organisation that has observer status at the UN Human Rights Committee, and while it's not really in her ball-park, she might know someone... but I don't know how realistic it will be that there'll be a legal (rather than moral) Human Rights argument to be made. Experts don't generally just know this stuff - they know where to look, and have to put serious time into looking, and they then know what the things they find mean.

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  102. Chris Morris22 May 2011 21:10

    Latest bloody stupid idea. Kind of off-topic as usual. But you are looking for specific suggestions on what might improve things.

    Politicians have bugger all experience of real life at street level - generally accepted fact. Tory millionaires, Labour ex-policy wonks, whatever. Probably not entirely true, but that's not the point.

    How's about every candidate for elected political office at whatever level but the House of Commons for starters, should have to sign up to a buddy system if elected. Someone - Sue would do ! - but could be local GP, Social Services, some agreed mechanism, nominates a member of Joe Public and the successful candidate has to give a minimum amount of time - say half a day a month - to their buddy. On whatever activity the buddy suggests.

    Some of those buddies would be disabled. Agree a basis for fair representation. Anyone on more than average national earnings is disqualified, just to level the playing field a bit.

    If the candidate doesn't sign up DON'T VOTE FOR THEM. If they sign up and default, THEY GET SACKED and a new election is held.

    Might lead to a more informed political debate, and just maybe better legislation. Wonder if anyone in the Labour Party would buy the idea, just as a starting point for discussion ? Even less likely any mainstream newspaper would pick it up as a provocative issue.

    All the parties try to present as equal opps when it comes to their candidates. What about their electorate ?

    But someone might make money with it as a reality TV show. Is that not a bit like 'The Secret Millionaire' ? Never watched it so I don't know.

    Anyone want to join me here in Cloud Cuckoo Land ? The weather's lovely.

    best wishes
    Chris Morris

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  103. Working from bed is nowadays an option due to the internet. This is something that we can do - having a laptop is recquired for this though.

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  104. What about organising ourselves into a voting bloc?

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  105. Sam - We ARE a think tank - that's exactly what we're doing.

    We don't need funding, just lots of minds all working together - we already have more here today than most think tanks. Be empowered! Choose a title! Decide to be "research analyst" or "IT consultant" or "media and communications" or "business development manager" or "PR Director" - whatever you like!! Find out what you can, get links, read what other countries do - why are their policies more successful than ours.

    Speak to friends you think might be able to help, pitch Celebs, whatever!

    We can be our own think tank we don't need money or an office.

    If we really get this right, we prove that we can do anything in our own way, in our own time.

    Now that would be at least a little harder for politicians to ignore. Solutions AND proof they work :)

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  106. @Jan Thanks I'll check it out.

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  107. Special needs children who are entitled to higher rate DLA because they need 1 to 1 support cannot go in mainstream childcare because they cannot provide the one to one support. They also cannot be left to become latchkey kids just because they are teenagers so you can work because they need 1 to 1 support. They also cannot look after any siblings so you can work because they need looking after themselves.
    If you have more than one child on DLA you are less likely to be able to get enough childcare and less likely to be able to manage to get anything done when the children are with you- even stuff like personal hygiene that if you don't keep up no employer is going to continue employing you but you'd probably be considered voluntarily unemployed if sacked for it.
    My kids when a bug goes round are almost always off school ill one at a time- I've just had one child off ill with tonsillitis each of the last 2 weeks but not the same child both weeks and I may well have the other one home this coming week- that would be 3 weeks off work with no pay. How are you supposed to cope with that? I've no husband because he abused us so I had to divorce him- all 3 boys are his kids and all born in marriage. He hasn't been seen for over 5 years even though he has a court order stating access once a month. He hasn't even been reliable with his CSA payments even though it was only £5 a week. I have no options of residential school or residential care- either I cope or Social Services gets them and they end up in a care system that is failing even normal kids and is over stretched and far too many end up becoming prisoners when they grow up. Social Services have said the children do not meet the criteria for me to get any support from them. If Social Services give them to any of their dad's family, if they count them as still being part of the children's family, the members of that family will tell social services only what they want to hear as a matter of policy (they consider it very bad to do anything else even if it means lying to social services) and they would be likely to give the boys to their dad, in spite of his caution for child abuse as they do not believe he did what he did, and they would be beat badly and no one would know and social services would not know they were living with him- I wouldn't even be able to see them regardless of any court orders saying I should. That is the sort of family they are based on how they behaved when the children were on the At Risk Register and on other occasions.

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  108. The Greens certainly have the best policies on sick and disabled people. But what power do they have? 1 MP.

    We need at least 326 and we need them fast.

    This has to appeal to them all. It has to prove to Tories that we can save them or earn them money. It has to show them that there are ways to show business that we can help them. It has to show that we can improve their bottom line.

    At the same time it has to improve our lives, remove the enormous stress placed on us, improve our standard of living and support us when we are unable to work without lurching into poverty as we slip through the nets.

    We have to give them a shiver of doubt. We have to show that their mistakes are costing them money and that money could be better spent elsewhere. We have to show them that the state traps us and spending money to change that would save them billions over time.

    We have to convince them to remove the fear and that it might make them some cash.

    They only care about cash. Not human rights or assessments or justice, just cash.

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  109. We need money if we're going to produce reports with clout, because they need data, unless we can get some really appropriate secondary data. However, if we want to be thought of as any sort of think-tank, we need more organisation. This is like a good brainstorming session (well, it is a good brainstorming session, it's just not in the traditional form), but needs a little (just a little) more structure. I think we could do more if we were more organised, in a recognisable sense. I don't know what goes on 'on the inside' of TBofB or anything, but we need to be more 'respectable' before we can get anywhere, and some of the 'easy' steps to respectability take money. I'm sure some academics and NGO workers will consult pro bono, but they'll still need expenses for some things. If we want to meet, we'll need a room to meet in and expenses for people to get there. If we want to avoid personal liability, we'd need to register as a Company Limited By Guarantee, which means keeping accounts of a certain standard, paying to register, paying to file annual reports. We might be able to get some funding for things like that from some groups, both of the Rowntree funders come to mind.

    If we want to produce reports, using whatever data (even if it's all qualitative, which isn't a no-no, just less weighty), we need a process as to how to draft them, internally assess them without release to the public, proofread, preferably referee even. I'm up for doing things like that, but I don't know if anyone else is. People seem to prefer to keep things casual, is my impression, and that has disadvantages if you want to make an impact. Then, if anyone's going to put a lot of time into it, they'll need paying; if they're going to be paid, they can't be directors/trustees if you want charitable status, and there's complications even if you're a non-charitable Company Limited by Guarantee. If you don't get limited by guarantee, if you're just an unincorporated body of whatever sort, then members or steering group members may end up attracting huge liabilities - I want to do this, but I don't want to go bankrupt.

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  110. Sue Marsh, for me childcare is one of those issues limiting work but I wouldn't just need childcare for work hours as I need childcare so I can take just one child at a time to the dentist, doctors, etc, and so I can do housework and shopping, and also so I can have a shower and wash my hair or get my hair cut. I would also need CAMHS, the pediatrician who visits Romsey Hospital, etc to have appointments they can give me that fit in with that childcare so I don't have to take those who don't have an appointment. I would also need to be able to have paid time off when my kids are sick because 3 weeks with no pay if you are on a low income is disastrous. I would also need help with night time childcare for kids who won't go to sleep or wake in the night and can't be left unattended or I am going to crash the car because I'll fall asleep at the wheel due to lack of sleep. Even then it would be a punishing schedule I'd be trying to keep and would probably be on route to a burn out. I have 3 special needs kids- an older child and twins.

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  111. Been working my brain all day - the whole reason a change was needed was the supposed thousand/millions that were claiming to be too ill and could work.

    Don't we have the technology for the cases were we are 'not sure' so we can measure pain/blood pressue/fatigue what we can do and what we can't over weeks/months?

    Pin us chip us tag us download us to the database! Let the facts speak for themselves when there is doubt, we are not criminals but if this is the only way we can prove our limitations so be it.

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  112. Sam - *Erherm* What if I said I can provide all of that, I just need the thinkers and people prepared to put in some hours? What if I said this really is our chance?

    I made a hint on my blog about things I couldn't write about - yet, but if you trust me I think we could all achieve something remarkable....

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  113. So, let's say for argument's sake that we find a way to run a think tank that could hold respect, and could work effectively and produce well-written, well-researched, as-watertight-as-they-ever-get reports. What then do we want to research and report on.

    Public policy on the disabled is an obvious one, and the way to let people know what we want and why, but it isn't what will get them to buy in - as Sue says, we need to show the Tories that we can help them, as much as any other party - really seem party-neutral. We need to show business that disabled people can be of value to them (doing this well would do that to some extent in itself, but we could also write reports about it in novel, creative and solid ways). We need to show how even (some of) those the state supports can give back in ways that are worth it to society. I think we can do that. Even those without the skills to write and research can do the academic-ish bits can generate ideas.

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  114. Aspie Mum - Surely your situation falls into the pitfalls in the care system? With your situation, surely you need proper support to bring up your children, saving the state millions in the process? If we're going to help them in a sense by doing their work for them, there has to be a total overhaul of situations like yours.

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  115. Well, Sue, if there's a real chance to get some of it (and I'm prepared to put in work to get those things as well), then I say we go for it and try to get it done, and I'm willing to put in my time and spoons, within the limits I have. The limits I have keep evolving, but I'll work with them.

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  116. Sam - In the last few months I've become totally disenchanted with policy formers.

    An idea has been brewing that we should do this our way. Anyone who wants to write a report in a certain area, should simply say that's what they're going to do. No information is ever wasted.

    I can get it "politicised" afterwards, but these should be our words, our ideas and our way of working.

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  117. (also, my SO wouldn't want to engage heavily on policy issues and deep stuff, but she'd be good at keeping paperwork moving between people - especially if it's electronic paperwork)

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  118. Sue Marsh, I'd also need support in work if I am to work even if when the children are older their care is no longer down to me as I have my own milder special needs: I have Aspergers Syndrome and I am Hearing Impaired as well as having a few other medical conditions some of which could impact on my ability to work.
    Support for special needs children and benefits never take into account the joint burden of care and all too often conditions like Autism and Asperger Syndrome and ADHD don't count because their legs work.

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  119. I do have one constraint:

    I think we need something ready fairly quickly. We can always evolve ideas later on and contribute more research and papers as the bill progresses, but we need to start worrying them as early on in the process as possible.

    If we can sketch an outline soon (many policy documents are nowhere near as well researched as you think and others simply run their own "surveys" to back up their nonsense.) It gives us something to work on as the policy progresses and also sets a profile up to gather it's own momentum.

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  120. Sue: our way of working, sure, and yes, reports on anything; caveating that, I'd say it still needs to have some semblance of academic rigour, and in terms of subjects it's a good idea to have target areas so people can see places to fit it into an overall (very broad) agenda, and to give them ideas. "How disabled people can benefit business (and other employers)" is incredibly broad, you'd want there to be lots of components and working papers (and whatever you want to call them) leading forward, rather than trying to do one report on that straight off the bat.

    Putting it simply - our way, absolutely. We need an idea of what that is, though, because structures help people work, especially when there's a lot of people involved. If we start without structure, and move forward without the first effort being building the structure, a lot of effort gets wasted. I'm speaking from experience on that point...

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  121. Sam - Let's focus on the brainstorm for a day or two, then move forward? I'd like to keep this thread for suggestions in the first instance.

    Perhaps if we get some really good ideas, we can start another thread or set something more formal up?

    (I for one am terrified of anything too "formal" I feel panicky just thinking about it, from all the times I got sick and let people down. That's not to say I can't, but it needs more thought.)

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  122. Sue: absolutely, and that brings back to ideas.

    One way we can give more to business (or whatever) is by businesses adapting to us. While that would rely on us showing them why they'd want to, first, it's also a good idea to know what those things would be, and one of the ones that cuts across almost all disabled people is dealing with the fact that we are unreliable; it's not our fault, we get ill more, we have variable conditions, we have medical appointments, and so on. That's the same problem that we'd need to deal with coming up with a structure for a whole load of us to work well together, not just for the productivity, but because we are mostly all terrified of letting people down, because we've done it before and it hurts us - we don't want to do it. So, a great place to start thinking towards several ends is, how can those of us who're rendered 'unreliable' work well and offset that reliability problem, when working with each other or working with the less-disabled?

    I'm going to give that question some though.

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  123. A possible redo of the whole system - make it a "guaranteed income". One benefit for everything.

    Everyone has a guarantee of at least certain amount of money coming in - amount that is sensible - enough to live well on, and differ due to the individual family - an amount for each able bodied person, another added for each child, another added for being sick or disabled etc.

    The one for a 'normal' adult could be smaller than a standard income, to still encourage the getting of a job by those that can etc.

    You would be guaranteed an income amount, judged by your family factors - allowances for all of your individual circumstances added up to a whole.

    If you work, then if you earn less the benefit tops you up to that guaranteed level, if you can earn more than that level you get not benefit but obviously get to keep the extra money as the incentive to work.

    There would be no issues over permitted work hours or any of that rubbish, make it purely and completely income based, but based on an income that people can really live on - you could work if you can, volunteer, be a stay at home parent, carer or unable to work at all, whatever - you are guaranteed this level of income.

    It would fit nicely with the Big Society - it would free up people to be part of that. And more people with money to spend would get the economy moving again.

    I have no idea what the levels or cost or anything else would be. I just like the concept.

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  124. Dombed - Have you seen http://www.citizensincome.org/

    I think IDS Universal Credit is a very watered down version that misses the fundamental point.

    I think the right have rejected such an idea, but that's not to say it couldn't be somehow adapted just for sick and disabled people.

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  125. Something I think this government needs to understand is that benefits for the disabled are actually much cheaper than trying to get them into work. Support costs money.

    I am still self employed at the moment, but that's partly because I have had a lot of help to stay that way. Assistive software, a proper seat, good lighting etc.

    What this government is after is simply sweeping the disabled under the carpet. Not only does it wish to abolish benefits, it doesn't want to offer any help either.

    It should be very careful where it is going with this. The most dangerous creation is always the man (or woman) with nothing to lose.

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  126. Firstly, to UK_Exile: "If you have serious mental health issues, you are already normally under a CMHT (Community Mental Health Team ) You [will] have [an] allocated specialist Consultant & a care co-ordinator."

    This is not always the case, and certainly not for me. My CMHT discharged me after three meetings as too complicated (my Consultant's words, not mine), suggesting I needed a more holistic approach involving the combination of my specialists, something I believe would benefit a lot of people with multiple disabilities, and would certainly help when facing organisations such as the DWP and Atos.

    As to the original question, I'm writing this without having read the other comments, so if I'm repeating ideas already put out there, oops - sorry!

    I am - as it stands - unable to work as most normal [sic] people do for a number of reasons, and would like to see more employers invest in equitable, decently paid work-at-home schemes for disabled employees. They are missing out on a rich vein of talent and experience simply because people are unable to travel into work, remain at work, or work a full 9-5 M-F week [sic].

    Although there is a law that requires accessibility for the disabled, it is being roundly ignored by Government, employers and transport providers. Something needs to be done about this, but I'm at a loss as to suggest what: if a law can't be enacted and enforced, where can we do to ensure that it is? I realise that it might be difficult to retrofit a lot of buildings, especially when even the most profitable companies are reluctant to do so.

    We're then faced with the problem that many companies are disinclined to train and employ disabled people - or even interview them! - and personally, I do not think that giving financial incentives to any companies are the way to achieve a balance.

    In addition, even if you can get a job in an ever-shrinking job market, transport links are, for the most part, not exactly disabled-friendly. Instead of building faster trains to cover parts of the country already serviced by existing lines, I would suggest reviving investment in accessible, financially affordable (if not free) transport, even though it's probably a pipe dream.

    I'd also like to see us not be penalised so heavily if a partner is earning money. If a working couple earns, the sky's the limit, but as soon as my partner earns a penny, my benefits are affected - not just my income support, but my housing benefit and council tax benefit as well. It leaves us no better off, but usually in more debt. How can people ever hope to escape the trap when the chains are tightened? Surely some compromise can be reached, or some other system can be set up to achieve this?

    A main bone of contention for me is that many of the authoritative organisations who deal with disabled people do not actually listen to the people they are supposed to represent, and there are a lot of people trying to be heard, all with different needs and concerns. We don't need a Minister for the Disabled (especially not the one we've got) - we need some sort of tzar, backed by a team of people who truly understand the vastly wide range of problems we have to deal with, especially those with "invisible" disabilities.

    Lastly, even though I can't walk but a few yards, and can't get outside, have anxiety attacks, horrific migraines, unenviable joint pain and everything else, I still have (most of!) my mind, and on the days when I'm not depressed, it works very well. Employers need to look at what disabled people can do and create work for them, not try to squeeze them into places where they will only fail because the work conditions will not suit them. They are the ones with the resources to fit around us: it should not be forced to be the other way around.

    If I think of something (more useful, perhaps), I'll write again.

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  127. Ah, now I like the idea of a tzar backed by sick and disabled. Politicos love a good tzar

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  128. Trivial really. I poured my heart out above, and no-one responded. Sorry to be so trivial.

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  129. TiddK - no one is ever trivial.

    I missed your response in the masses, but I've read it now, and you definitely deserve better.

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  130. Sue you will need a free forum at some point owing to your popularity so that everything is always accessible if you need me to set one up for you just shout

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  131. Just a few last minute comments before I go to bed:

    In terms of lawyers, I am dealing with one at the moment who is helping us apply for judicial review of our council's decision to increase charges for domiciliary care. I will ask her if there are any legal grounds on which we could challenge PIP, but I have a suspicion the Human Rights Act isn't strong enough. In terms of the Disability Law Service, they can't help unless there's a solution to the money issue; that's why they're not helping us here in Kingston.

    Sue - do we have anyone high profile on our side who could help get us heard by those in power? I've been following the debates in the Welfare Reform Bill committee and the depressing thing is that the opposition always loses votes on amendments as everyone votes on party lines and their are more Tories and LibDems on the committee than Labour. Let's hope the Lords can do better!

    The worst part of all this is the sense of powerlessness, with the government producing totally inadequate draft criteria for PIP. I'm finding it hard to feel at all positive I'm afraid.

    In terms of intellectual clout, my personal tutor at the University of Leeds is Professor Colin Barnes, who is very well known in the disability world. He might help us if we start pulling something together.

    Hope some of that helps.

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  132. Or the other intellectual/academic person who might help us is Peter Beresford at Brunel University. He's very well known in the disability field.

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  133. I'd like to have something like an eBay but a philanthropic one just for stuff people need or can do for others. The only currency is goodwill.

    I'm currently writing the greatest book ever written, but it's not written because I'm still writing it and it makes this prediction that something like this will actually exist and will be BIG.

    I read it in a book... that I wrote.

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  134. Crazy Idea

    I wonder if Barack Obama likes or even knows of the way our government is treating disabled people. He's visiting the UK on Tuesday, perhaps any US folk living in the UK could let him know that we're all being treated like crap so he can have a word with Cameron?

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  135. Simply put - I would love to work. I have worked in the past, in some instances, massively long hours. Some jobs I've loved, others I've loathed.

    I know my biggest fear is losing my DLA or its replacement. My car would be lost - I would become trapped in my own home. My partner is my carer - and I would become virtually bed bound if they had to go out to work - and I dread to think how I might cope if I then needed to get up and go to the toilet. There is absolutely no way they could go out and work - and absolutely no way I could. I tried to do some voluntary work of just a few hours about 3 years ago (with the benefits knowledge). It lasted all of two visits! I was in tears at home when I realized I couldn't even help in a charity that was massively close to me personally.

    I would love to see the DWP working directly with the NHS (I see my GP, occupational therapists on rare occasions, and a specialist - inc. physical therapists on their team). The specialist sees me every 6 months for reviews. My GP pretty much every month - at the very least for blood tests.
    I cannot always even manage to be well enough for those appointments - and often have to reappoint on the day. They know why this is, and accept I would be there if I could.
    If I regularly cannot make a half yearly hourly appointment - how can I make daily work?

    I accept that some benefit reforms are needed - I think most of the main charity's who support many disabled people do also accept this. However, the way it seems to have been done is beyond comprehension. It isn't working...... the schemes there to help are not flexible enough for the whole number of different facets so many illnesses present themselves, and more importantly, how you can put two people in the same room, with the same disease, and both can have completely different outcomes at the same stage.

    If someone breaks a bone, it is recognized there are a number of different ways a bone can fracture, and therefore different treatments are needed to heal.
    Why cannot this be recognized for so many other illnesses out there.

    And to end - even to do this small piece has taken me from Sunday morning, to nearly 5 am Monday morning.
    And the reason I am up - I have ended up having to get up (and disturb my partner to help me achieve that) because my pain levels are now so great, as soon as I fall asleep, the second I move - I'm awake again. I am currently waiting for my strongest painkillers to kick in so they effectively knock me out!

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  136. Jane - Yes we do.

    TiddK - I just went back and found your comment. I'm sorry I didn't comment on it - actually I found it tremendously powerful. In fact, I called my MIL over at the time to read this to her :

    "I am tired all the time. This isn't tiredness as normal people experience. This is crippling fatigue caused by all and any activity, including watching TV, being on a computer, eating. ESPECIALLY eating. I am so tired after eating lunch that sometimes I just want to die."

    I absolutely 100% know that feeling. You were one of, I think, 2 comments from people with very serious disabilities who said that it was the illness side or symptoms that make it impossible to work. I've often thought this is the fundamental point. In many instances I think an illness creates more barriers to work than a disability.

    Your comments about dying in dignity made me cry.

    It's always hard to keep up on days like yesterday as I have to generate the traffic on twitter and facebook and other blogs to keep people commenting. I do try to keep up, but I was a victim of my own success yesterday!! Lol.
    When you're asking very vulnerable people to bare their souls in public, it's not very helpful if you can't respond to that (Lainey, you too, sorry)

    I will always catch up in the end - usually by the evening I can spend more time.

    With all of that in mind a HUGE thank you to all of you who took immense trouble and time to write something. If it's not too much, it would be wonderful if you could check in now and then over the next few days and help the debate to evolve. I think there were some very very important points made yesterday and a few patterns started to emerge.

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  137. **Lainey - I rang my Mum in the afternoon and she was in tears! I was terrified something awful had happened but she was reading your comments at the time.

    We will change this this time. Because we're right. It might take years - no one project changes everything, but we will change it.

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  138. Oh Bless you TiddK I copied you name to paste and send love to you when i read your comment and carried on reading but when I saw you hadn't been responded to at all I came down to the bottom and will go back to carry on reading the thread...hugs

    I cried reading your post, I have some understanding but my condition could improve so there is a different kind of feel to it but I also totally understand the hurt of neglect and feeling uncared about. I care. I say you deserve dignity and comfort as best as can be provided...I also felt safe becoming ill in Britain that I would be kept at subsistence levels but at least not persecuted or totally neglected. I no longer feel that safe and I feel pain for us all going through that as well as my own...I am sending love and hugs x

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  139. One of the biggest problems I see with the idea that the disabled can 'judge' each other, either by helping Atos or on tribunals is that even when two people suffer from the same illness/disability, their symptoms are not necessarily the same. Some of the least sympathetic people I have ever met towards the disabled are actually disabled themselves. There's very much the view 'If I can cope then so can you.'

    It's not always true. I think one of the first things we have to realise is that we are all in this together. And in practice that means we may have to make alliances with people we might not normally have contact with.

    Being disabled isolates us. This government is rather relying on that.

    PS I posted two comments here earlier but I think one has disappeared!

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  140. Oh Bless your mum Sue, give her a big hug from me and tell her I said she's got a lovely daughter and I am sure that has something to do with her...grins

    It has been quite a day I slept on the sofa in the end for 6 hours 6pm to 12am. I had my main meal about 05.30!! Plays havoc with everything not being able to sleep at routine times, but I have written more about that and feel some of it is appropriate here, not able to think right to edit so here goes...

    Elaine Edwards
    Sleep disturbance is a game all of it's own. It is just past 4am. I slept on the sofa, have been awake 4 hours, and not eaten a proper meal for 24 hours. I'm thinking full English, aww not got black pudding but still got sausage, waffles, tomatoes, eggs and bacon. I have also got the george grill I can leave it to cook in and a pan clean to boil the eggs in, which I have come to prefer as the easier option to frying. YES food I am hungry!

    I was thinking of yesterday and the typing I did and the aches and pains in my body. I am more affected by the opinions of outside than I would prefer to be, or I wouldn't often be thinking of how whatever I am doing corresponds to my perceived genuine need of being considered not fit for work. I am now mildly obsessed with it as opposed to radically obsessed when my nightmare of being declared fit for work started last year. The insult was that I was just getting back to being fit to self care after the last breakdown of health and well being when I felt suicidal because I couldn't even do a whole day of college work, never mind support myself. I am about back to that stage more of the time again now, not as bad as I can be and not as good as I could be. I am almost constantly assessing am I doing less than i could. Could i do more to make my living conditions better and get back to being able to sell my work and not be considered scum for being unable to? This is not conducive for recovery, so I am trying to pare it down even further but not by drowning it out, by looking at what deeper things that makes me feel. Ignoring feelings is not an option I can take any more. I get ill and can't sleep for different ones than are in force right now.

    I meditate a lot, not consistently or in a regimented way, as and when, in whichever method suits the moment. I do live in the moment often, where I am just happy with what is right now. I do not depend on others to give me happiness or entertain me or allow me to entertain them. I channel any need for expression all over the place so I don't need to demand it of others, yet I want to sometimes, grins!

    I think that because i approach it the way i do some would see me as lazy and some would know how much effort i do put into being me and sharing what i can in whatever way I can in each moment....But whatever way I approached my life there would be some of the same people perceiving me in similar ways....
    2 hours ago ·

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  141. Elaine Edwards
    That was bloody gorgeous and another triumph indeed...I decided to use the cabbage & mash from Thursday's tea at mums...cooked in the george foreman grill after 2 chops and with 3 chipolatas...while the chops were cooking I did the washing up, including the meat dish from god knows how long ago when I cooked the chicken and last washed up. I didn't feel awful doing it either, the hot washing up water soothed my hands and my grip is a bit better again now. No worries of dropsying a cup of tea so much now :o)

    I made a lovely onion gravy to go with it, managed to cut an onion up gently brown it by leaving it on low heat and added gravy granules to boiling water poured on as i made my 2 cups of tea. I am about to drink my 1st one...I feel like it is bedtime! Not sure how the sleep pattern is going to pan out now, maybe I will be able to go and buy my downstairs single bed this week. I would love that.
    about an hour ago ·

    Elaine Edwards just trying to remember what song I realised was going on in the background of my thoughts as i WASHED UP...oops cap lock...ouch wrist pain...
    55 minutes ago ·

    also I had read the blog about rape and which is more serious...I know kind of off topic but linked as well...

    Elaine Edwards
    Reading this was pretty disturbing to say the least. Of the 2 men I was raped by, the first guy was 17 & I was 18 at a festival with my family, I went for a walk with him. 2nd guy was a couple of years older than me, I was 31 and it was a first date at his friend’s family house party. With both it was about power and of not allowing me a say in the decision of if he would get his own way or not, in both cases in different ways and in both cases it had been made clear sex was not on the agenda. Down to the basics, it was treating me as if I was a commodity not a human being with autonomy. Because I was under threat of being beaten the first time I avoided any more physical abuse along side the sexual abuse by complying as if willingly, while internally shutting down. My response during second rape was to cry throughout after the repeated no was ignored and I went limp, he told me afterwards he thought it was okay. He also thought it was okay to grab a different woman by the wrists and try to force her on his sofa when she went back to his flat in the day, she got away. He has never been prosecuted and I know of other women he has also forced himself on. I didn’t report my rapes for exactly this kind of thinking and the ordeal was bad enough the trauma of reporting was not something I could deal with at the time. I was already in danger of suicide.

    I managed to live a productive life for a while and work through my shattered self worth, trust etc etc. I am now ill and am treated as if it is nothing. That I just need to pull my socks up, get some confidence, get a job and I will be fine. I just need to be treated as a human being by the system then maybe I could have a chance to recover and work. You may say this is off topic but PSTD experienced after rape is not taken seriously or properly supported and maybe I wouldn’t have got so physically ill on top if it were not for these kinds of assumptions where the victim is blamed or partially blamed for their being in the presence of the man unable to suppress his desire to use a person for his own pleasure. It is all further abuse to the victim to be treated as nothing all over again.
    Comment by Elaine May 23, 2011 @ 2:48 am

    I have found it therapeutic sharing here, maybe not the main aim of the thread but a by product and sorry if I have gone on long tangents. The reason I have included about the rape is I see atos as abusers as much as the men who raped me. I am not in pain and fear of rape issues these days but I am atos abuse issues.

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  142. Yell in the Dark - I can't see another comment in spam. Sorry, but I fear blogger may have chomped it up.

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  143. I'm 23. I have a university degree and am on jobseekers allowance. I planned to do a PHD and work in a University, but first I'll need to work and save up until I can afford to study, and with the cuts will there be jobs in Universities? So for now I am looking to work part time, starting late in the morning.
    I have a rare genetic disorder which affects all my connective tissue (muscles, bones, blood vessels etc.) I've been told that if I overwork my skeleton now I'll pay for it later and likely end up in a wheelchair. I walk with a stick and need a lot of rest. If I get exhausted I faint, or temporarily lose the use of my legs or my sight. I can't live alone because when I've overdone things I sleep for days; someone has to wake me and give me fortified drinks, otherwise I'd die. But I was one of the lucky people this new assessment was 'tested' on so I am denied disability living allowance or carer support, because I can touch my toes and wash myself on days when I'm not asleep and not in too much pain.
    It would be easier for me to get a job if the employer was compensated for the fact I can only work part-time - maybe the DWP could help them to find another part-timer able to do the early morning session and an agency service to cover days I can't work. It will cost me more to get to work as it's unsafe for me to drive so I'd like help with transport costs. Lastly I need a part-time carer - someone who will phone me in the morning and visit if I don't wake and will come and collect me by car if I lose the use of my legs or sight while I'm out - at present I have to rely on family or friends or call for an ambulance. Without that support I'm looking for a very sympathetic employer as some days I'll simply fail to turn up (being asleep) and other days I'll need removing from the workplace when I can't walk or can't see.
    For now I live with my Mum but she has the same disorder - she's not as badly affected but her mobility is worsening as she gets older so we'll reach a stage where she also needs a carer. The occupational health department at her work insist she has a special chair and regular rest breaks - but she already had the job before she was diagnosed. Is an employer going to take me on, knowing that the government is unlikely to fund the extra resources I'll need? If we don't get the support we need to enable us to work as much as we can while preserving our mobility for as long as possible, it's likely we'll need much more expensive care later in life - and much sooner if I'm obliged to take an unsuitable full time job once my 13 weeks of jobseekers allowance expires.

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  144. There's so many comments it's hard to keep up and so no one is being ignored; it's just difficult to keep track of everything and sometimes impossible to find what to say. We're all living this, and yes, it's hell. We know.

    I'd encourage everyone however to not just make a post here and leave it at that - please copy and paste what you've written to your MPs, to charities, to whomever you can think of. Again, this is a call for a pro-active approach, for getting up and demanding to be counted.

    "What employer would want me?" Is a common thread I keep seeing over and over again. Honestly? The answer is probably "none". Now that can fill us with despair over the next 10 posts or we can think of alternatives - and that's rather the point here. ALTERNATIVES. Get creative! What sort of work would you LIKE to do? Is there a way you could think of establishing it as a self-employed business? Part time? Flexi-time? Job-share?

    I think we're well aware here that some folks just cannot work, full stop, end of. Proving that people simply cannot work is also going to be a huge stumbling block as the restrictions are rather ridiculous. So, perhaps we can put some thought towards finding an established protocol (perhaps with Benefits and Work's help) to put out some sort of resource leaflets for people which are easily accessible to walk people through the new PIP process; sort of like CAB but since their resources are being cut perhaps we could form our own network to be able to help people who have particular disabilities help to fill in the form. Yes, no two people are alike in that regard but if there's a couple people who have MS and know what that can be like then they can help other MS sufferers fill out the paperwork in a proper dot-the-i/cross-the-t fashion.

    We all have our war stories and honestly just telling those probably requires a full blog. But it's time to get angry now - and it's time to DO something. People with nothing left to lose are a hell of a force to be reckoned with.

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  145. Somone eairler asked for the presidents address
    A vdeo clip is here

    http://www.whitehouse.gov/video/Inside-the-White-House-Letters-to-the-President

    Inside the White House: Letters to the President


    Every day, President Obama reads ten letters from the public in order to stay in tune with America's issues and concerns. "Letters to the President" is an exclusive behind-the-scenes look at the process of how those ten letters make it to the President's desk from among the tens of thousands of letters, faxes, and e-mails that flood the White House each day.



    You can also call or write to the President:

    The White House
    1600 Pennsylvania Avenue NW
    Washington, DC 20500
    Please include your e-mail address
    Phone Numbers

    Comments: 202-456-1111
    Switchboard: 202-456-1414
    FAX: 202-456-2461

    web email
    http://www.whitehouse.gov/contact

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  146. Hi Everyone!

    Oya's daughter and I are having "technical health difficulties" today! Our servers are down, lol

    I've asked OD to help me by "chairing" the debate a little with me, so that between us we can keep up with responses easier.

    Do keep thinking and suggesting guys. We can do this.

    ReplyDelete
  147. Contact Us

    Contacting the Prime Minister

    There are several ways to make your views known to the Prime Minister.

    Write to Number 10

    You can write to the PM at the following address:
    10 Downing Street,
    London,
    SW1A 2AA

    Email Number 10

    It is possible to email the Prime Minister’s Office using the link below. If, however, your issue is personal or you wish to be assured of a direct response to your query it may be better to write to Number 10 using the postal address above. Responses to emails cannot, unfortunately, be guaranteed due to the volume received.

    Email the Prime Minister’s Office

    Fax Number 10

    You can fax the Prime Minister on 020 7925 0918. (From outside the UK, the number is +442079250918)

    http://www.number10.gov.uk/footer/contact-us

    facebook
    http://www.facebook.com/DavidCameron

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  148. (Sorry, this is apparently a long comment!)

    Firstly, I'm going to be slightly controversial and say that I think a "fitness to work" type assessment carried out by our own HCPs is a tremendously bad idea with only superficial appeal.

    Our relationship with our doctors etc is complicated, and I think giving them this responsibility would be bad for both us and them. The appeal is fairly obvious; they "know us" and could provide an accurate assessment of us.

    But what if that assessment isn't what we'd like? What if they genuinely think you're capable of work? What if they don't jump through the right DWP hoops?

    People and their doctors work together as a team, and at Consultant level, this can require a lot of trust and faith in the doctor. The doctor-patient relationship itself has been shown to be medically beneficial, and I expect the trust issues are amplified in some mental health issues (although that's just conjecture).

    I think the risks to this relationship, and its subsequent effects on treatment/trust/approaching drs with new issues/whatever far outweighs the benefits.

    My problem with the current system is one of form, not substance, so in terms of the assessment for ESA (all I have experience of) this is what I would suggest:

    1. Bring assessments etc back 'in house'. Give it back political and ministerial accountability.

    2. Allow EVIDENCE from someone's practitioner; ignoring their input and experience is silly.

    3. The descriptor points to be more flexible, and evidence-based rather than ideology.

    I'm unsure how this would work in practice, I'm just throwing it out there. For example, "loss of control of bladder or bowel leading to extensive evacuation at least once a month" (15 points) as 'disabling' as losing consciousness once a week (15 points)? Is losing consciousness 20+ times in only 3 weeks of the month less disabling than it happening only once every week? I'm not meaning to say that one is worse than the other, but the effects are different.

    Now onto actual ESA and other things...

    I think a big part of the problem is societal attitudes, and I'm not convinced this can be dealt with from The Top. A lot of peoples view of "disability" is incredibly stereotyped and restricted to that of "has to use a wheelchair". Until this can be tackled (it CAN, I'm just unsure how), anyone disabled but not in a wheelchair or with a 'stereotypical disability' will be labelled a scrounger, and be an easy target.

    Within the 'welfare framework', one of the things that continues to bother me is the 'encourage to work' mentality. This is patronising and degrading, and as you've said essentially misses the point of long-term illness*. What's more, that 'encouragement' is basically being told over and over and over again that "if you go to work, you'll get £40 tax credits!", as if that's going to magically cure our conditions.

    I don't think any 'support' would work for me; "partial to complete inability to function socially" is a defining feature of my condition. I have the perfect 'social model' disability; were society restructured in such a way (that way would probably benefit most people) my condition would be irrelevant. Society isn't going to be restructured for my benefit.

    The annoying thing is that, in theory, I'm capable of doing ANY work. but my very condition (not a symptom of my condition as pain is a symptom of many, for example, but the actual defining feature of the condition itself) make it impossible. There's one treatment which offers 'mild to moderate improvements in 33% of cases", which I've tried and did nothing. But every assessment, the ATOS genius tells me I'm going to be "fit for work in 3 months". That's doing noone any favours

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  149. Gosh, I had no idea it was THAT long. One apologises for clogging up your Internet!

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  150. Lainey, Dombed, Sue - thank you so much for your heart-warming responses, I felt them like a hug. (Sorry to have been such a drama queen.)

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  151. hon sometimes we all need be drama queens...I was having a vision of cinderella but that could be cos earlier I was thinking of if cinderella had the pain in my knees when i got up last and I was longing for the fairy godmother with the magic wand for a split second, ok maybe longer. To share your heart like that takes guts and to feel ignored feels awful. I sometimes have a bit of a moan, some say it is all I ever do...I don't reckon you were being a drama queen, I reckon you were being a human being in the midst of a real drama of a life...and you longed to be seen as a human being with the right to dignity and as much joy as possible to fit in to the life you have left. I am so glad you felt our words as a hug...smiles

    I wrote earlier as I was uploading the video I recorded today ****PLUG video made in response to this and on my blog called How Can We Help & Be Helped ***about how I don't know how long i will be here, I am determined to follow my passion, no matter what obstacle I need to get through. I live it in a different way to you TiddK but we all deserve dignity and appropriate support. HUGS XX

    am I being a drama queen now?

    I think we are all just looking to be seen at all...hugs to all going through this pile of utmost poop xxx

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  152. jonathan - wrote long comment, lost it, too poorly today to write again - will try again when better

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  153. Great article. I apologize for the short comment. I accidentally deleted a decent long and complimentative one.
    Uniformed citizens are urging politicians in the US to cut much needed programs that benefit the the elderly, sick and disabled. There is a huge lack of empathy and I feel like that attitude is being cultivated. I am disgusted by the lack of emoathy, but I am encouraged by writers like you who do their homework. Thanks for fighting the good fight.

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  154. I have ME so am totally familiar with the psycho-social model. It is well documented how the insurance industry and their paid psychiatrists invented something called "Chronic Fatigue Syndrome" because they feared claims for ME would spiral - (see http://www.oslersweb.com/index.htm . The fact that ME is defined by the World Health Organisation as an infectious, neurological illness doesn't stop insurance companies wilfully muddling differently caused chronic fatigue so they can claim it is all "subjective" and somatic and therefore nothing is really wrong with the claimant and they won't pay up. ME sufferers have also been routinely vilified for years - as all disability claimants are today - so the tactics are nothing new. These are the same people who have been advising recent British governments on Welfare reform.

    ME is a chronic, fluctuating condition, so the WCA does not assess it in any meaningful way. This means most people with ME are turned down for ESA and have to appeal. There are very sick people who do not have the energy for going through stressful ordeals without seriously affecting their health, so shame on all politicians for introducing this approach and perpetuating it.

    From my experience, the only solution would be an integration of health and welfare inputs to help disabled people get back to suitable work at a pace they could manage, or assess fairly that it would be better for their long term health if they didn't work for the time being. Because the system is inflexible and punitive, it is hard for people to be completely honest with the DWP assessors and for medical professionals not to want to protect their patients.

    The system assumes you can work full time if you say you can do a little. There is no adequate facility for trying things out, which would include voluntary work, and failing without fear of losing benefits. For the system to really work there would have to be good will towards claimants and collaboration between the welfare and medical professionals in the best long term interests of the individual. Some hope, I'm afraid. The message from recent governments, despite the rhetoric (remember "No One Written Off"?), is that only the stick will work, and the bigger the stick the better.

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  155. As the parent of a child with a disability, lack of accessible and appropriate (before you even consider affordable) childcare has been the main barrier to work for me during my stronger periods. My son is now nearly 12 and even if specialist nurseries or childminders were available he is too old for this type of care. Although my older children are 14 and 16 it is simply far too much responsibility for them to care for their brother for more than short periods of time. Working during school hours could be an option but it would have to be term time only and jobs like that are like hens' teeth. Even were I fortunate enough to get such a rare job, I think I would have lost it by now as I have not had a single day since the Easter holidays when all three of my children have been at school due to various illnesses.

    Some kind of specialist day centre for children, especially older children, with special needs that would be available during school holidays would be a huge step towards enabling parents back into the workplace.

    I truly believe that the lack of opportunity for me to participate in society by working, even in a small way, has been a contributory factor in prolonging and exacerbating my depression. When I am ill I am not really capable of working but I have had some fairly extended periods of quite good mental health and, had I been able to find work during one of these periods, I believe that the associated positive affirmation and social interaction could possibly have mitigated against a relapse.

    As someone with poor mental health, I find the prospect of work terrifying, in fact the thought of the process involved in just seeking work is overwhelming. More practical support in job hunting and completing applications to give people more confidence in their own abilities would help this. Crucially, I think that people who have been out of work for long periods of time, particularly due to mental health issues, would benefit enormously by a phased "return to work" programme whereby they could start very slowly, maybe only a couple of hours a week, and build up their ability and confidence gradually to be able to cope with longer hours.

    The benefits system would have to be made a lot more flexible to accommodate such a slow return to work (and the likelihood of setbacks within the programme).

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  156. http://www.lwbooks.co.uk/journals/articles/rutherford07.html

    This tells you pretty much all about welfare reforms and why we are now being told we are all fit to work

    UNUM Provident and Mansell Alyward, Purnell Freud and blunkett

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  157. Uk_Exile (on Twitter)23 May 2011 12:49

    In reply to MRadclyffe :

    Firstly I said normally. I did not not say in all cases, are people with serious mental health issues, with a CMHT.
    Secondly you quote me directly in your comment, but decided to add words to my quote. If your going to quote me, please don't add words. I am not a writer, I know, but I don't need to have corrections made. This is not a school exam.

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  158. As this thread has been crossposted to Broken Of Britain, thought I'd crosspost my replies

    Here goes...

    Counter-intuitively, if it was easier to start a fresh claim I would be a lot less nervous about signing off. I've been on the sick for depression and related problems for ten years and I'm at the point where I reckon I have a 50% chance of making it in the real world.

    Newflash, politicians: A 50% chance ain't good enough. If I stopped my claim, started looking for work, got sick again and signed on I'd have to go through a nightmarish process which could endanger my life.

    I'm not joking here - I've literally had my head on railway tracks during that 10 years, I've also made detailed suicide plans in the last year - this isn't a histrionic threat but a fact of life. I think I'm over that now but I worry about a lot of my friends.

    I want to work but suffer from fatigue and repeated episodes of depression - which means that I have to play it safe, even though the last thing I want is to be a lifelong claimant I'm trapped in the system by the very cruelty which is supposed to encourage me out of it.

    Another thing which I think would work would be something along the lines of a Citizen's Income, where you take a drop in benefits but can work while claiming, with the cash being recouped in the form of income taxes, rather than means-testing and clawbacks.

    Be generous with people and they'll play ball - set up an adversarial relationship and they'll do their best to avoid doing what you want - even if in the long run it's bad for us.

    Finally, it costs a lot more to deal with all the homelessness, crime, and self-harm that will result from the "reforms" than it does to just leave us alone. For example, if you take away all the benefits and medication from those awful "undeserving" drug addicts they won't get jobs - they will just end up running around stealing for a fix again. If you use welfare reforms to create mass poverty you will get more addiction, more homelessness and more crime because people will have nothing to lose - ignore this fact at your peril.

    However as we all know, a system based on compassion and trust is what would be truly unthinkable. What politician would risk being seen as "weak" by their bigoted supporters?

    And so we see, cruelty has its own rationale. This is the world of the Milgram experiments, where you can do anything as long as someone in authority lets you. I fully expect the next government to legalise euthenisia and put it on the NHS at this rate.

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  159. I think the most important thing that can be offered to people who have disabilities of any kind is total understanding. The employers need to be educated in the affects of a disability. Understanding of the medications and the affects they can have. Ensure that the employers recruit the correct people for the job and not look at any disability. You might say that this is already in place but have you gone into an interview with a walking stick and been looked at in fear. Too many people are frightened of what we have labelled as disabled. We are no more disabled than any other person - things we cant do we make up in what we can do. How many people who are so called able would put up with constant pain, lack of movement, and still manage to do the chores around the house. Not many thats for sure. If you are able and you have a bad back you take things easy. People who are classed as disabled because of the arthritis in their back carry on and do more than they should.

    Dont judge us because we are different. It should also be illegal not to supply the correct equipment for your employee and occupational health should be brought in as soon as an employee starts work to ensure that they have the best equipment to enable them to do the job instead of looking at the equipment already there and try to fit the employee to it.

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  160. Robert - Thanks for that, Great minds think alike etc - it's the last link in the article!! Snap!

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  161. Firstly why does the government ignore what our doctors,consultants or therapists write about us, surely these people are the best qualified in making a judgement as to whether we are capable of working or not as the case may be. I agree with alot of the comments about why would an employer employ a disabled person, when they have so many able bodied people out there who have no job. I think it would be a good idea to offer us some form of home working, as on the days you felt unwell you would not have to drag yourself out of the house, it would also enable you to have regular breaks if you needed them without a boss breathing down your kneck. Surely the government could pour some money into this sort of scheme and then they could do away with their benefits.

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  162. I am currently awaiting my appeal against withdrawal of ESA. I have been signed off by my GP for some time with a number of chronic illnesses including a terminal cancer, but the doctor from ATOS found me fit to work. What amazed me however, were the comments made on my assessment sheet by the doctor. Maybe I don't meet the "illness criteria" determined by government, or maybe I do, we shall see. I have a severely disabled brother who is unable to talk, look after himself in any way or keep himself safe and has life threatening eplilepsy. I suspect he too would be considered as fit for work under this regime and am rendered speechless at the thought of it. Margaret Thatcher has a lot to answer for but she is a lightweight compared to today's self interested, self seeking, corrupt, powermongers.

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  163. A terminal cancer??? And they found you fit for work?

    Do you mind me asking what the cancer is and your prognosis? Don't worry if not,perfectly understandable on a public forum. I'm very concerned - if you'd rather email,it's suey2yblog@hotmail.co.uk

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  164. Educating business is a good and important idea; more to the point, I'd've thought that, if enough credibility is established, businesses would pay to have someone give them advice specific to their business, coming in and looking at their premises, learning about what they do and how, and working out ways to harness work-at-home disabled people. There's several things in it for them - social kudos, lower costs (not needing space and furniture), and maybe the government will consider offering some small subsidy for such things. Move quickly enough, and there might be money from back-to-work providers behind something like that as well. That's an idea for the 'think tank' basket, I think. Start with producing general advice and guidance, of course.

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  165. I suppose cancer can be terminal but not massively symptomatic (at least in theory)... I think cancer is only an automatic pass to the support group if you're having chemo, about to have chemo, or have just had chemo. It's an automatic pass to DLA (and planned to be for PIP) if you are expected to die within six months, IIRC.

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  166. Old up...

    If there is supposed to be no disability discrimination

    Surely the attack on us is discriminatory?

    and breaches our Human Rights.

    I still think it is far cheaper to keep people on IB than to waste millions giving it to ATOS who say you are fine - then you appeal and waste yet more money going through the appeal.

    I think that every person deserves respect. Not just the disabled - also the ones whom they are sanctioning just for the fun of it.

    This govt has lost its humanity and respect and we hafta help them refind it whether they want to or not!

    They hafta be made to see that we have worth. and just because we arent millionaires like them - doesn make us lesser humans. In my eyes they are the lesser humans as they have not earned their place on their pedestal - they just were a lucky embryo.

    So - to teach them the value of the disabled That is a lesson they have to learn as well as being forced to treat humans as humans and not just as scum

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  167. There's probably all sorts of international law arguments that can be made, from the European Convention on Human Rights, which has been fully adopted into UK law, to the UN Convention on the Rights of Persons With Disabilities (which I've glanced at and spotted a few arguments, I may develop this more when I have spoons); problem is that it really does take someone who's more of an expert on such things to make a coherent and useful argument on these bases.

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  168. For anyone who is disabled to return to work (always supposing this is possible) there need to be physical adjustments to the workplace, and time off for sickness without them needing to dip into their holiday entitlement.

    Sadly, government departments are among the guilt culprits who will force people who are sick to use up holiday entitlement or risk disciplinary measures. This is clearly wrong.

    I am sure there are many people who could, with a little help, work from home. Unfortunately there is neither the will nor the funding to allow this to happen.

    What this government doesn't seem to realise is that in areas where many people are on benefits, they become an essential part of the local economy. Cut their benefits and the whole local economy suffers - local businesses that have been going for years suddenly fail.

    What we need is joined up thinking and common sense. Not a big stick and a load of patronising claptrap!

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  169. if your doctor says you are not fit to work and they are in the medical proffession why should these morons at atos be allowed to belittle their opinion this is all about targeting people who cannot fight back.who is going to employ somebody with a long term illness

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  170. Out of spoons for thinking today - hope someone else has some to take a look at these links.

    They are from the The British Institute of Human Rights. It looks like a good resource.


    BIHR is an independent human rights charity that is committed to challenging inequality and social justice in everyday life in the UK.


    BIHR's briefing on the Human Rights Act in an age of austerity

    http://www.bihr.org.uk/sites/default/files/Human%20rights%20and%20austerity%20brief.pdf



    Human rights - advice giving organisations

    http://www.bihr.org.uk/resources/advice-giving-organisations



    Your human rights - a guide for disabled people

    http://www.bihr.org.uk/sites/default/files/bihr_disabled_guide.pdf



    Your human rights - a guide for people living with mental health problems

    http://www.bihr.org.uk/sites/default/files/bihr_mental-health_guide.pdf

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  171. It sems funny that the Govt are happy to employ these specialists to treat us on the NHS - They are happy with that and they give them the name 'consultant' and whatever - Then all of a sudden what the consultant thinks does not matter and ATOS suddenly know more than a consultant who specialises and trained for years and years in this field! Ridiculous when you think about it

    I would say that this govt are definitely doing underhand tactics in this thing (ESA/WCA/PIP) we just hafta catch them out at their own game and this is always possible - The more they lie - The easier it becomes to hang them with their own rope! And it only takes one of us to catch them out - and notice when they fall into the trap

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  172. Further links -

    Looks like another very good resource Sue -

    LIBERTY

    What kind of advice or help can Liberty offer me?

    Liberty runs free specialist advice services for private individuals and voluntary sector organisations.


    Your Rights

    Our dedicated information website www.yourrights.org.uk has comprehensive and up-to-date information about all aspects of human rights law in England and Wales.


    Advice Line

    If you don't find the information that you are looking for on our website, you can call our advice line on these numbers: 0845 123 2307 or 0203 145 0461. If you are calling from a mobile phone the '020' number may be the cheaper number to use.


    The line is open at the following times:

    Monday and Thursday 6.30pm - 8.30pm Wednesday 12.30pm - 2.30pm


    http://www.liberty-human-rights.org.uk/about/our-work/index.php



    Liberty is a cross-party, non-party political organisation with over 75 years of experience lobbying parliament. Our voice is at the heart of political debate around human rights in the UK.

    We provide detailed briefings on Bills before parliament, respond to government consultations and give expert written and oral evidence to parliamentary committees on issues which have implications for human rights and civil liberties.

    Our policy team regularly meets with frontbench and backbench MPs and Peers to brief them on individual human rights issues, and to ensure that they keep basic rights and freedoms in mind when considering laws and policies.

    http://www.liberty-human-rights.org.uk/policy/


    Where we cannot act on a request for legal assistance and the enquiry touches on an area of law that is of concern to us or in which we have some expertise, we will provide free legal advice. To find out more please visit Liberty’s legal information website www.yourrights.org.uk

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  173. OK reading the human rights above these are what stood out to me...
    Why are human rights relevant for me?
    Human rights belong to everyone, and they provide a very important means of
    protection for disabled people. Human rights place authorities in the UK – including
    the Government, hospitals and social services – under an obligation to treat you with
    fairness, equality, dignity and respect.

    and
    If public authorities fail to respect your rights, you can bring a case against them in the
    UK courts without having to go to the European Court of Human Rights. The Human
    Rights Act therefore provides you with an extra level of protection, and makes your
    rights more accessible. It is generally quicker, cheaper and more practical to bring your
    case before the UK courts. You do not have to be a British citizen to do this – the
    Human Rights Act protects everyone within the UK.
    You can still take your complaint to the European Court of Human Rights if you do not
    agree with the outcome of your case in the UK courts.

    and
    Which human rights are relevant for disabled people?
    All of the human rights protected by the European Convention belong to and may be
    relevant for disabled people. This guide will concentrate on the four human rights that
    are often the most relevant:
    l the right not to be tortured or treated in an inhuman or degrading way;
    l the right to respect for private and family life, home and correspondence;
    l the right to life; and
    l the right not to be discriminated against in relation to any of the rights in the
    European Convention.
    These four rights raise a range of issues that can be relevant for disabled people, which
    are discussed below. However, the relevance of human rights for disabled people is not
    limited to these issues. The Human Rights Act is still a relatively new law and has great
    potential to empower disabled people in many areas of life.

    YES - Human dignity - this could really become something...


    Run out of spoons
    wil have to read this in depth - something in here could really help us

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  174. I think it is good to make alternative plans to move forward in case we ultimately lose the benefit battle. Plan B's and other ideas are essential.

    But I also don't think we should just be giving up and focusing only on what we will do if we lose. The battle is not over yet, and part of me feels like they WANT us to make alternative ways of surviving, as it were. This plays right into call-me-Dave's silly big society plan.

    What we are seeing is the destruction of the welfare state and I am not willing to just let it die. I said yesterday that I think we need to step up the campaign and even think of becoming more militant.

    Remember when wheelchair users dumped themselves out of their chairs on Downing St. during Blair's time? This is possibly the sort of thing we should be thinking about.

    Maybe that's too controversial for here but the government themselves are playing nasty with us. Labour, to their shame, also don't see us as an ally. They now think they weren't tough enough on us!

    I'm ready for an increased fight myself. I may constantly be in pain but I do have fire in my belly.

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  175. Parliamentary and Health Service Ombudsman www.ombudsman.org.uk
    Looks into complaints that Government departments, their agencies and some other
    public bodies in the UK – and the NHS in England – have not acted properly or fairly or
    have provided a poor service. Their website contains detailed information about how
    to make a complaint.
    Complaints helpline: 0845 015 4033
    Email: phso.enquiries@ombudsman.org.uk


    maybe we should all write to this person

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  176. A human rights lawyer is very expensive if you can find one ?
    if you are on income support only then you will get the full service for free

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  177. Sue, you ask great questions. But they all presuppose that government wants to find a solution to issues of disability and chronic illness. People in government do not currently want to find a solution. They want the issues - or the people representing those issues - to vanish, so that they don't have to think about them any more, which is the response of most non-ill, non-disabled people when confronted with long term illness and disability.

    Until we convince those in government that we exist - and I really don't think most individuals in government or opposition see us as real people yet, not real like they are real - there are not going to be useful policy solutions.

    I agree with the person who said TV programmes should be the starting point.

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  178. Barba Bright24 May 2011 00:10

    The best thing the DWP could do to help me work is to make benefits available on a daily basis. I know within a few minutes of getting up in the morning whether I can be productive that day. I want to be able to 'plug in' to work and be available when I am well enough to work without it being a process that takes less than a second to sign off benefits and anything up to a year to sign back on.

    The other thing is that IT IS THE EMPLOYERS who need the carrots and sticks, not the disabled people. Most believe 'if your bum is not on the seat then you're not at work'. This won't enable a benefit-cutting Government to achieve its aims. So, financially penalise the organisations who DON'T or WON'T enable disabled people to work - any which way they can - and especially cane those who employ someone in a wheelchair (bum on seat) while sacking those who need more flexible arrangements.

    Me? I can work (and want to work) about 4 hours on a good day, for which I'll need an employer close by, no diaried appointments or business travel, access to audio/video conferencing, a height-adjustable desk, a perching chair and a bed.

    I have a degree in business, a diploma in coaching and mentoring, an apprenticeship in technical and business writing and editing, and 26 years' experience that enables me to see, assess and solve all kinds of business and people problems on the fly. Who will pay me?

    Bravo on the blog and the spokespersonship. You are truly inspirational.

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  179. Suggested Tweet to promote this thread (for those who Twitter):

    RT If you want a disability benefits system that really works, comment here: http://bit.ly/iV95P4

    ReplyDelete
  180. Barba Bright24 May 2011 00:37

    Sue, just wanted to make sure you are also aware of this, Govt's attempt to get rid of the Equalities Act by labelling it 'red tape':

    http://www.redtapechallenge.cabinetoffice.gov.uk/equalities/#comments

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  181. Just want to jump back in here and clear up some misapprehensions about my suggestion that disabled people assess people for PIP. What I'm NOT suggesting is that they would work for ATOS; they need to be employed by the public sector and have the ethos of making the right decisions, not saving money. I'm also NOT suggesting that disabled people do this without proper training - including from people like us on this blog site. I'm also NOT suggesting that they do a medical assessment - this can be done by evaluating the medical reports claimants send with their claim and if necessary talking to a GP or other health professional over the phone. What I AM suggesting is that disabled people be trained in the social model of disability, about the range of conditions and how they affect people and about the reality of life with a disability or long term condition.

    I also agree with someone above (I think it was Sue) who commented that illness causes more problems than disability. I certainly find that in my case - I am disabled due to my condition, but sometimes I am more ill than other times due to that condition. When I'm not ill I could do some work but if I do much I will get ill again.

    Am very much aware of the government labelling the EQuality Act as 'red tape'. We all need to go on the website given by Barba Bright and give input saying how important the act is, to outweigh all those who may be going on there to say how much they think it should be got rid of!

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  182. Douglas - This is nothing of the kind and if you think I've given up then I dread to think what you'd say about the other 99.9999999% of the population.

    Of COURSE we'll keep fighting the plans, this is nothing to do with a plan b at all. It's about EMPOWERMENT for goodness sake! Our lives are in their hands - do you WANT it to stay like that? grovelling and begging for every pathetic scrap they throw us?

    This is a thread for SUGGESTIONS on how we could all make our lives better - FOR US!!! I know I want to work but the system stops me. I know many many others feel the same way.

    We've really got to stop thinking in terms of ATOS and assessments and living in poverty and out of touch politicians controlling every second of our lives or do you WANT to go on living this way??????

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  183. Could I please ask that for this particular thread from now on, it is just about suggestions?

    There are plenty of posts about ATOS and our terrible situations and ways to fight the government. It's what I spend my life doing. Empowering ourselves, changing our own lives. I want the thread to stand as a totally radical new consultation, not a list going over the same stuff we've all done to death.

    This is about suggestions for alternatives.

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  184. Okay, I shall stick to suggestions.
    1. Improve the disabled's access to legal advice and representation. At the moment the Equality Act is something of a dead duck - even the EHRC will only take on a case if they deem it significant. If you are discriminated against, even if you can prove it, even if the other side admits it, then you are still on your own.

    If these acts which are there to protect people had any teeth, employers and service providers might heed them. As it is they get away with far too much.

    As I said in an earlier post, even government departments are forcing people who are sick to take sick leave out of their holiday entitlement. Meaning the disabled get less holidays than the non-disabled.

    Until things like this are dealt with within the workplace, there is no workplace for a disabled person to work in.

    Now with regard to benefits... we have to try and change the way the media present the disabled. I think one way - and it's something I use - is to keep commenting whenever they post something defamatory about the disabled. We have to begin to turn the tide (and this thread has shown how many of us there really are) by showing we don't agree.

    Also, by posting on these online papers, we are giving others - those who might not actually post for themselves - a chance to show they agree. It's surprising how often the Daily Mail will scream about scroungers in a headline and then as the shift of opinion in the comments changes from agreement to pointing out that they never show the other side of the coin, the story is downgraded.

    These are all small things, but I believe they help too. Nobody in this discussion must feel they can do nothing.

    Nobody must feel someone else will do it for them. We can all do something, however small.

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  185. Well if we want an end to our lives in their hands the only way I can see to achieve that under this neo-liberal capitalist system that we all live under is to start up our own business.

    A business owned by us and which would employ us and would make provisions and allowances for our unique circumstances and limitations caused by our illnesses and disabilities. One that would let us work from home on our computers.

    Although some of us are weakened individually by illness maybe by cooperating together as a collective we could be stronger than the sum of our parts, like ants.

    We have the internet as a tool to organise and small amounts of money pooled together can sometimes come to a substantial amount.

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  186. I think it's about finding ways of encouraging employers to work with disabled people in new and creative ways. I do voluntary admin work and do a good job, but no one will employ me because I would be off sick about half the time; but the other half time I could do a good job for them. How can we get people to work within these kind of boundaries? There are more forward thinking employers who may take such people on but it is extremely rare. Self-employment is another possible answer but keeping your head above the water when you suddenly get sick would be difficult, and when day to day exhaustion makes everything too much even the smallest of tasks could get overwhelming. It's just a shame that there are so many talented and intelligent people who are sick but feel useless because they are not being 'of use' and won't be unless something changes in employment law. I hope such consultations as this can make people think differently.

    Thanks for this blog, Sue.

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  187. I've been off/out of work for 4 1/2 years since being diagnosed with yet another chronic illness, I already had 2 now have 3 chronic illnesses. I get DLA, but not indefinite and that is the only benefit I get as I have a spouse at home who works. The loss of my salary has been getting us deeper in debt, we live life day by day. We also have children trying their best to be independent at University. My spouse has had a pay freeze for the last 4 years but the cost of living hasn't stopped going up!!
    I've tried to get work, even had interviews, but the majority of applications get no acknowledgement at all. The kind of illnesses I have limits me to what I am able to do. The old saying of 'The mind is willing but the body isn't' is most days for me, but I do try. I get depressed thinking about what is going to happen in the future, WE ARE NOT ALL SCROUNGERS.

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  188. Nanobot - Now that's more like it!! Very interesting. Combined with what Liz says, that's already two things - and they could even work together, ie the self employed business idea feeding into employers, maybe covering periods when employees can't work etc.

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  189. My C3 SCI hubby is now of retirement age so ESA is less relevant to the issues that he is facing which is access to the medical profession in a timely manner so he can have a life.

    I have now been seriously looking to get back to work now for the last 6 months but I have the disability of being a carer so even though I have a better than average Cv I still have not found work.

    So my comment is where does the government think all these jobs are going to appear from, it is hard enough to find work as someone who is able bodied let alone someone that does not exactly fit the socially acceptable stereotypes of the able bodied.

    I wish great luck to all out there that want to work and there is nothing out there for them.

    Angela

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  190. I am sorry for the tone of my previous post then. Lately I've been feeling so despondent, defeatist and incredibly depressed that I cannot even think straight or come up with a decent suggestion.

    No, I don't want to keep going on this way and I certainly do think we should be working to empower ourselves even more.

    I think I am becoming slightly obsessed, however, with the public perception of sick and disabled people. It seems we are public enemy number one right now and the reports of increased violence and hostility is adding to this sense of hopelessness. If we are going to empower ourselves I think something absolutely needs to be done about how average people see us as it all seems negative right now.

    I really do want to get more businesses onside and destroy not only the public perception that we are all feckless scroungers, but also the perception that we are people who need to be patronised or patted on the head. I want to be part of mainstream society again and if the general public isn't going to be on our side for this then I guess we really do need to just look after ourselves and form our own paths without their help, as it were. A co-operative or even a think tank would be just the thing as was suggested above.

    This is indeed one of the best threads recently and some of the suggestions are brilliant. I don't really have of my own other than to suggest we need to smash the way most people tend to think about us these days. Sorry for being so negative and defeatist/accusatory before.

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  191. Hopefully this will get posted. I'm having trouble with the chaptcha thing keeping not letting me post anything even though I put the letters in what must be right and I am as careful as possible with it.

    PIPs is going to affect kids. Parent/carers will be forced back to work and the kids left without the care and support they need or even ending up in care (and I don't mean childcare- which there isn't enough of for disabled/special needs kids) because their parents can't cope- carers lose the chance to not work so they can care for their special needs/disabled loved ones if their loved ones lose disability benefits and that just as much applies when the disabled person is a child. However, you can wreck a child's whole future by messing up their childhood- for example, delaying help with Autistic Spectrum Disorders even until the child is older and the Government has had chance to recognize its mistakes or be replaced can mean the help given won't work as well let alone if left until adulthood because the parents were forced to hand over their child to Social Services and they were moved all over the country from school to school, foster family to foster family and perhaps even children's home to children's home due to autistic behavioural difficulties- it is common for a child in care, even a normal child, to be moved around not only if they have behavioural problems but even if they don't just because of financial reasons, social services' budget considerations. Care also produces many more future prisoners. You can't choose to put a child in residential care just because you need to work which you could with an elderly person. Some parents do have the option of residential care or residential school (unless they can pay for private schooling and then you have to find one that can meet your child's needs) but many disabled kids do not meet the criteria for such to be an option- children such as my 3, for example. You cope and you meet the kids' needs or the kids get taken off you or you choose to give them to Social Services- with no help from Social Services or anyone else to avoid that unless you kids meet the criteria for getting help individually (joint burden of care considerations do not apply even if they are why you can't cope). No other options are available in many cases.

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  192. I'm sorry too Douglas, I think we're all feeling the pressure at the moment.

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  193. I think the mentality has to change. There's a lot of really nasty assumptions that are being made about claimants, assumptions that don't get made about anyone else who deals with the government.

    The obvious question is - Why are rich tax dodgers given a free pass and the sick and disabled treated like they're all on the make? We all know the answer to that one, yet people are hounded into destitution and worse over sums that amount to less than what these guys tip their servants.

    The system has to change and the assumption that claimants are all scum is the first thing that has to go. It need to have compassion at the centre of it, not "toughness", a "hard edge", or being "cruel to be kind".

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  194. "nanobot said...

    Well if we want an end to our lives in their hands the only way I can see to achieve that under this neo-liberal capitalist system that we all live under is to start up our own business.

    A business owned by us and which would employ us and would make provisions and allowances for our unique circumstances and limitations caused by our illnesses and disabilities. One that would let us work from home on our computers."

    So basically a cooperative - run by us, staffed by us, paying us.

    That could work - its a recognised business model. And it could work to suit us. The problem most of us have with employment is having to play by societys rules - but with some like this we could make our own rules.

    Challenge would be to find appropriate jobs, if you see what I mean - as in work that could be done from home, and 'pooling' would be a good idea - we can't all be ill on the same day, people could step up on the days they can and let others step up on the days they can't function, which means in theory a target can be met and not held up by any individuals - whic would be good for keeping stress levels to a minimum.

    For one example - proof-reading or something like that that involves data. Material could be downloaded in small chunks and then worked through at the persons own pace, with others doing other chunks etc, until the entire piece has been finished, then put back together. Contract fulfilled, money earned for the cooperative and no one has to be anywhere at a certain time or run themselves into the ground.

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  195. Re Nanobot's ideas and subsequent thoughts - is great idea and already exists, is called Virtual Assistant work (VA). Run through cooperatives usually, often by at-home mums and people with disabilities or illness: http://www.virtualassistantsguide.com/virtualassistantassociations.html
    Are there other areas other than editing and secretarial work that this type of work could offer services in, that's perhaps the question?

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  196. as I had mentioned before; there's definitely wider scope. I worked as a home typist for some time, but the problem with that is it's apparently cheaper to send the work offshore and pay a pittance than pay people here a decent wage. However it's not difficult to set up and there is software out there which digitally "shreds" sensitive material. For a while it worked for me as I hate talking on the phone - typing was fine however.

    There's still a fair bit of scope; the run-by-ourselves cooperative has been brought up quite a few times in the thread and it's worth maybe pooling that together and figuring out how it could work. I can see a fair bit of range with the idea.

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  197. It definitely seems to be a theme and I think a really, really interesting idea. Keep going on this one guys.

    Also, no-one has mentioned re-training or education. Obviously it wouldn't help everyone, but as we've said lots of times, that's why we need a much more tailored, flexible system. If retraining or educational alternatives had been offered at the point of becoming unable to work, I wonder how many people could have extended their working lives?

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