Wednesday 25 May 2011

Welfare for the people, by the people - Continued





  1. It just let me post another one to it, although it flowed onto a new page... in any case, this is what I posted there just now:

    Other things that can work well in that sort of cooperative, as long as there are procedures and practices established to provide continuity and consistency of service, include a fair amount of computer work, especially at the software end (sysadmining, support and maintenance, even development), and also the kind of think-tanking work already discussed. There's probably still more.

  2. Perhaps some might be interest in this

    Perhaps start with a website that brought together the homeworking opportunities that are already out there and perhaps run it as a recruitment agency where you could persuade companies to offer homeworking options?

  3. I am afraid we have done little work on the subject of what positive changes should be made to the benefits system. Our focus has been on critiquing the government’s suggestion.

    The key issues that emerge from our supporters’ views is that they want to have a benefits system that:

    a) Fairly assesses people’s abilities and needs, using accurate and expert knowledge of claimant’s conditions. For arthritis this means assessments that accurately describe the impact of fluctuating nature of their conditions, of pain and fatigue. The Disability Benefit Consortia produced a report earlier this year, Benefiting disabled people? It surveyed 6,000 disabled people. Our supporters contributed to that survey Consortium. It found nearly 7 out of 10 believed the assessment failed to take account of how their condition fluctuates. This finding chimed with the findings of our WCA survey.

    b) The benefits assessment process should be humane. The above report revealed that 43% of those who had been for a medical assessment for ESA said it made their condition worse because of the stress and anxiety it caused. That repeats the experiences described by respondents to our WCA survey.

    c) Eligibility for benefit takes into account the true cost to claimants of their conditions. This is of particular relevance to DLA, where our DLA survey revealed that many people on the lower rate of DLA still rely on it to pay for essential costs that people with arthritis face, such as prescription charges and travelling to medical appointments. DLA / PIP must therefore clearly safeguard the benefit for all those whose conditions mean they face significant extra strain on their weekly budgets.

  4. In terms of how the how the benefits system could be improved to help people with arthritis, in our response to the government welfare reform white paper, we had this to say on the subject of helping people get back in to work:

    Q7. Do you think we should increase the obligations on benefit claimants who can work to take the steps necessary to seek and enter work?

    In general we agree that claimants who are able to perform some work should be required to seek employment as a condition of benefit entitlement. However, we feel that the emphasis needs to be on increasing employment of people with long term conditions through creation of better facilities to support them in re-entering the work place, as opposed to the introduction of more stringent criteria for successful benefit claims.

    There needs to be recognition that people with long term medical conditions, such as arthritis, need substantial levels of support to help them to overcome the hurdles to re-entering the workplace, which they would not face if they were in good health.

    Many people with long term term conditions and of working age want to work but are not able to do so, not because of the lack of “conditionality”, but because they lack the right support. Arthritis Care’s own research revealed that two-thirds of people who left work because of their arthritis had initially asked their employer to make “reasonable adjustments” to allow them to stay in the workplace, but did not receive them; and of those who were not working due their arthritis, 65% felt their past employer did not provide the support they needed.

    Consequently, it is vital that equal weight is given to improving support facilities for those who are able to make a journey from incapacity to some level of employment. The IPPR report “Now It’s Personal: learning from welfare - to - work approaches from around the world” sets out a comprehensive account of good practise in the area of supporting people with disabilities back into the workplace.

  5. Here are my ideas. Most of them will involve an initial investment on the government's part, in order to save costs further down the line, but I feel that's the only way forwards. Many economists agree that making drastic cuts in the aftermath of a recession will only make the situation worse.

    1. As many people have said, scrap ATOS and let the expert professionals involved in claimants' care decide whether their patients are fit to work or not. I'm aware these professionals will charge for their time, and I don't know how that compares to the cost of an ATOS assessment, but the current system is not fit for purpose and is morally wrong. Whatever system is used, it needs to take into account fluctuating health problems and any pain, distress or other symptoms caused by work. Yes, there may be a small minority of claimants committing fraud, but the government is guilty of much greater fraud if it knowingly uses a system that routinely denies people benefits they are entitled to.

    2. Put support and incentives in place for businesses who employ disabled people. There also need to be greater penalties for businesses which fail to comply with the disability discrimination act (e.g. refusing to make reasonable adjustments) and a clear pathway for disabled people to complain about this. End the practice - common in the public sector - of employees being disciplined for taking "too much" sick leave, unless there is evidence the sick leave is fraudulent.

    3. Likewise, put support in place for self-employed disabled people and those who are thinking of starting up a business.

    4. Invest in the NHS so that everyone claiming sickness/disability-related benefits is getting the best possible care. There are people who will never be able to work, but also those who could work or even recover if they received appropriate treatment.

    I have a chronic mental health problem (recurrent depression) and am lucky that I am able to work. I'm self-employed and the flexibility of this really helps. I'm also lucky enough that in the past, I had a wonderful (private sector) employer who was willing to relax my deadlines during episodes of depression - but when I worked for the public sector, I was threatened with disciplinary action for needing to take time off sick.

    I did spend a couple of years on and off benefits shortly after diagnosis, and the reason for this was simple - I was not getting effective treatment. My GP did not know what to do with my medication but despite being unable to work, I was told I was not ill enough to see a psychiatrist, and longer-term talking treatments were not available in my area. I know from talking to others with chronic and disabling conditions that my experiences are common, and not just limited to mental health services. Any health problem that causes people to take sick leave from work or claim benefits needs to be taken seriously and appropriate treatment provided in a timely manner. That, plus offering the right support to claimants/employees and employers alike, is the only sustainable way to get people back to work.

  6. I think it pretty much boils down to a few simple points:

    1. Take into consideration individual symptoms and illnesses. We are currently treated like we fit into neat little categories and I have never met a single person claiming ESA or DLA who fits into the nice little categories they mark you by. We are individuals, our conditions are individual to us and any condition of any kind will vary person to person the impact it has, it should be treated according to this by the government rather than them assuming that everyone with a certain condition has the least severe type or the least severe set of symptoms.

    2. Not everyone needs the same financial support for their illness. The majority of people need a lot more than they get. Myself for example; the council in their infinate wisdom decided it was appropriate to house me in a village meaning my transport costs are astronomical because I need certain types of transport because of being in a wheel chair (the bus on my local route does not have a ramp so I have to use taxis). Therefore I use a lot more money than someone in the town for transport costs. Someone else will need a very specific diet so therefore their food costs will be higher. Someone else will need a 24/7 carer and that will cost. What we get is a tiny portion of what we in reality need for what our disabilities and illnesses cost us. Some people need less than they do get too but the majority of the time the person gets a vastly smaller sum than they need in reality to manage their condition and their life living with illness and disability

  7. 3. The government needs to follow to the letter the code of human rights as set out by the UN on disability and the rights of those who are disabled. Currently the government does not do this, they violate about half of the points and are set to violate all but two of the points. This means that disabled and sick people in this country are getting a poor deal by the standard of rights everyone else gets to live by. These need to be upheld and policed to ensure they are being upheld in this country by the government and everyone else. We frown on other countries for human rights violations and our own country is just as guilty.

    4. IF someone who is sick or disabled WISHES to work then there should be people or agencies there to help support them, help them find the right work with the right employer who is understanding of their needs and their specific illness or disability. Employers should not be bullied into employing disabled people, nor bribed (as is happening in my local area) and people who are long term ill and disabled should not by any means be coerced nor forced into work, especially against the specific instructions of their general practitioner, consultant, doctor or other trained medical professional.

    5. The documentation and supporting evidence of general practitioners, consultants, doctors and other trained medical professionals should be taken more serious. Currently they are asked for evidence and then their evidence is disregarded and an ATOS doctor assesses instead. This shows disrespect and little faith for highly trained medical professionals who deal day to day with disabled and ill people; they are the best ones to judge someones condition be it deteriorating, fluctuating, stable - they know the ins and outs of it and will accordingly communicate this in an effective manner to the government body who requires the information - this is however information which is asked for then disregarded currently.

    6. ATOS are a contracted workers employed by the government and are therefore very expensive. If the role was returned to doctors and other medical professionals who already care for the applicants then this would cut a huge amount of money from the government budget and would return the duty of diagnosis to the NHS. ATOS are not however employed to disagnose or dertermine if someone is ill or disabled but to prove that they are able to work despite all evidence to the contrary. Their examinations are intrusive, embarassing and unnecessary. If ATOS contract was terminated then only two public sectors would be involved, the DWP and the NHS, this is all the system needs in reality, ATOS is a drain on resources more than anyone sick or disabled particularly considdering their failure rate with over 50% of their decisions being overturned with appeal tribunals.

  8. Perhaps we need to go back and look at why for most of us we had to leave work in the first place, or what would have helped us to stay in longer.

    If we can prove what was broken surely these areas will need to be fixed before we can think about going back to it, just to be failed all over again.

    This would proable need a more holistic approach I know for many small adjustment could help but also if you are using 100% of your engery to work you can't always look after yourself at home either so expecting those who are just about well enough to work could mean offering more in terms of support at home ie getting up, being able to eat in evenings etc.

    We need to show what we need and demand more in terms of support if we are to have any chance of fullfilling their back to work goal. If they can't do that for the small number who could do some work what chance do the rest of us have.

    And further to my earlier post I think we also need to demand for those placed in the work related group a list of acutally jobs that we could do. Its one thing being told we can work with support they must also be compelled to tell us what jobs and what support they are offering. Again where are these extra services coming from?

    Call their bluff lets all march on parliment demanding our old job backs and demanding assistants and access to work etc the very system that through as out of work is stopping us getting back.

  9. Having RA i know all about the pain and fatigue associated with the disease (hate that word), but then along with that you also get loss of grip, unstable on feet, depression caused by illness so on and so forth. agree employers need to be made/told they have to change their way of thinking regarding disabled people. last company worked for asked how fast i could get out if there was a fire (H&S MANAGER) thats what were up against all disabled people on a daily basis

  10. I'm not sure what could be done to enable me to return to work. Who's going to employ someone who's doubly incontinent and who needs showers sometimes twice a day and a change of clothes? If that weren't bad enough my spina bifida and tethered spinal cord (lipomyelomeningocele - which it's too dangerous to operate on) causes me severe debilitating nerve pain in both legs 24/7(which have no feeling from just above the knees to my feet, and at the back no feeling from my arse down but they still hurt inside) and even though I take stuff stronger than morphine to help I'm still in writhing agony and unable to concentrate.

    In an ideal world I wouldn't be forced to undergo a medical and the word of my neurosurgeon, GP, urologist, gynaecologist and people who deal with me regularly (i.e. my full time carer/partner) would be used in place of having to force my screaming body out of the house. I can't drive, neither can my carer so we have to rely on public transport or taxies. It's embarrassing to be parked on a bus, knowing that everyone can smell you've had an accident :(

  11. So - In tall effects we have come to the conclusion that some people are disABLEd and can work and want to work. Some of us are unable to do this for many different reasons. This govt need to listen to us and understand that we are not scroungers - the tats prove the low low fraud rate of DLA etc.

    ESA needs to be humane and to LISTEN to us. To not be just a tick bos system where they do not even know who the person is as they never make eye contact. It needs to be more of a TALK and less of an exam of tick boxes on a computer.

    Basically - Humanity is the key to this - And to listen. IF they listen they will learn - If they build it they will come! - IF they make us able - many of us would take up the call to work as we would have been enabled to do so.

    Obviously some people who suffer from severe fatigue, and oain and other things may not be - These people need CARE and not attacking - It all boils down to humanity and care

  12. I'm not receiving disability benefits because, to be frank, I cannot face goin through all that and I would almost certainly not qualify under the new rules anyway. My problems are "all in my head" so to speak. I have been a full time student and then a full time employee my entire adult life, but three months ago I lost my job.

    My mental health issues and the side effects, withdrawal symptoms and other issues with the various meds my doctor tried me on meant I was not reliably able to be present at work as often as I should. On average I was missing 4 or 5 days out of each month because either medication side effects left me physically incapable, or because my anxiety was so bad I couldn't leave the house. Some days I would make it in only to have to go home after a particularly bad start to the day left me struggling.

    In the past I coped with this without meds, by unhealthy means. Once I decided I wanted to get better and stop self harming, it all went to shit. What is worse, my employer heaped on the pressure after they found out; turns out they wouldn't have been insured if I'd done serious damage to myself within office grounds, you see, so it was unacceptable that I feel those urges or ever give in to them.

    I am physically capable of mostly any work. Mentally I am highly intelligent, numerate, creative and motivated. The problem is that I cannot cope with noise, groups of people, being required to remain in enclosed spaces, unexpected intrusions like telephone calls, excessive stress, unpredictable stress or pressurised work enviroments with targets. I cannot promise I will be able to turn up on a given day. My old employer couldn't provide the environment I needed and very few jobs exist which would not provide some issues. I am basically unable to take on work where I deal with the public, sales based work or office work. Or work according to a schedule like 9-5.

    What I need is quiet, solitary work in the open air where I do not need to deal with people, can work at my own pace and do not need to work towards specific targets. So far, nothing that pays actual money offers this. I am currently trying to get involved with some volunteer opportunities that will let me work in my own time monitoring and tending local woodland areas, but getting involved is a slow process and I will still be dependent on jobseekers to keep me fed, clothed and in a house.

    What I need is for the government to recognise the difference between being able to work sometimes and being able to work reliably for an employer. It isn't fair to a company to hire me, go through trouble with my issues and have to fire me, pay me in lieu of notice and search yet again for someone to replace me. What I need is for there to be incentives for employers to be more flexible with working hours, working from home and employee responsibilities.

  13. Somebody further up commented on the NHS and treatments for long term health conditions - totally agree with that. Many of us dont get on going support and treatment for our conditions. Also NHS could do with more joined up thinking so that eg re physio - I got referred for one joint, then another one went which I had to get rereferred for and got sent to a different physio (who had the sense to rerefer back to current physio) am now having problems with a couple more joints so have to face the prospect of rereferral for those! will they be sent to even more physios!! My health condition means I have problems with joints so do I see a different physio for each joint and problems with one joint impacts on another. Also I dont know how to access which service to get the correct aids I need? So am now seeing a chiropractor and getting advice from them and buying appropriate equipment from their advice. The only reason why I am able to do this is because I got DLA so can now afford this. There are many who cant.
    All this advice, treatment and aids should be available on NHS and would assist in independence and the possibility of being more able to work.

  14. I watched an excellent interview on BBC South Today yesterday. Southampton General Hospital children's cardiac department is recognised as the second best performing unit of its kind nationwide. So the government is planning to close it down. If that is "consultation" then there is no hope. How can it be cost-effective to send desperately sick children from the South to London or beyond for treatment? There is transportation cost, family accommodation cost..... Oh but I guess if the child dies then there is less family benefit to pay out - That's exactly what it seems like from this incompetent and heartless shower.

  15. just in case mine were ones that got chewed...

    Peace Artist Lainey said...

    something I said a long time ago was that the jobcentre could become a better place to go

    to, it could be a place where people get help rather than sanctions and stress, offering

    counselling independent of the jobcentre, drop in centre, a safe place. It could be a place

    where people who for whatever reason are unable to work but can offer an hour here or there in

    particular ways to be put together with someone who needs their services and people who need

    someone to come in and change a light bulb, change their bed, a bit of gardening whatever can

    be matched with someone able that they feel comfortable with, over the phone, via the net ~

    possibly even skype or in the centre. No sanctions if someone is unable to participate and

    expenses for those who do. Maybe it would need to be a different organisation but I just felt

    how wonderful if the place you go to get support or welfare did actually support our welfare

    and well being. That workshops would be easily accessed through, yes further education too,

    not just for disabled but for single able bodied people caught in the catch 22. I was able to

    go to college when I was a single parent but had I been single would have had to work through

    college full time college and a full time job or several part time ones. I did have one night

    a week bar work but that is besides the point. A place where they genuinely support people

    back to work where appropriate or help them find vocational courses and activities they can

    mange in the mean time but NOT FORCE or decide for the person what they are capable

    general treat us as adults and not like naughty children...
    25 May 2011 15:05
    Peace Artist Lainey said...

    in fact make counselling training (at least up to the 2 certificates needed to go on to do

    the diploma) part of the training for anyone in the role of supporting people in welfare and

    well being. This would need to be phased in but once it was up and running it would bring

    community back and create a less us and them society.

    A place where people would feel comfortable and safe going, even people who worked or

    didn't need to work could go and be a part of it. Small businesses could be helped through it,

    people who need support to run a business due to health factors could be supported by able

    bodied people. Benefits could be more flexible. We could benefit each other through it and put

    an end to the isolation so many feel abandoned in...
    25 May 2011 15:17

  16. When I first read about the new groups for ECA I thought the work related group was a good idea for those whos had a small issue keeping them out of work. I thought that since you were not in the well enough to work or too ill to work you would not be getting to much pressure.

    Turns out I was wrong, been reading lots of things lately and turns out the work related group sounds very much like JSA sancitions have to turn up for regular interviews, have to keep proving what you are doing for work etc.

    Since I doubt I will be judged ill enough for the support group I am very very concerned about the pressues of this new group. I know I can not work at the moment I can not sit up for more than few hours and can not stay awake all day, I rarely manage to leave the house. This is unlikly however to qualify me for the support group.

    What happens to people like me? will every interview I be told I am not trying hard enough? No amount of training courses will enable me to be better, will the be happy with goals for the time being staying awake all day?

    In some aspects this feels like bullying but by "specialst". I looked up the work related group today on the direct gov site it says clearly most people will be put into this group we really need to do something about this.

    While I accept for some conditions fancy gadgets and gismos will help some people to "overcome" the effects of their disability if we have been judged with limited capability what does the jobcentre plus think this means?

    It means extremly restricted not just in turns of the particulary job you may be able to do but also in the days you can show up and what you can do each day. We KNOW there are no jobs like this (most of the good ideas here are about finding this magic flexable work) so what can we do about the group most of us will be put in?

    Feeling really stressed about this today, I know this is the group I am more likely to be in but I had more or less conviced myself I would be given some slack and the more I find out about it the more it seem its going to become a major repeating stress.Sorry

  17. I think we really should think hard about forming a co-op for disabled people. Or a disabled peoples' union. We must never forget there are power in numbers.

  18. Anonymous - I think this very thread is most crucial for those who find themselves in the Work Related Activity Group.

    This is why I've gone on and on about time-limiting - things were bad with everything you say about feeling bullied, but to say "and if you're not better within a year and have a partner that works, you'll lose everything" Is what is going to turn this from a chaotic mess into something really dangerous.

    That's why I think these ideas are so important - we need alternatives for the sick and disabled and the government aren't planning to do anything or research it themselves.

  19. In fact several of us have written to our MPs asking them to request the research Chris Grayling, IDS etc used when analysing the results of time limiting ESA. How many families can afford to lose 5k a year? How many will it push into poverty? How many claimants will be affected?

    I don't believe they did any research. Any of you who can spare a minute or two to ask your MP to ask Grayling to produce the research.

    I have a hunch we should really force them on this one. I'm not sure it's legal to bring in a policy with doing an analysis of the effect it will have is it? So the info must be out there. Has anyone ever done a Freedom of Information request?

  20. I don't think many people would have a problem with a benefits system that encouraged people with disabilities into suitable work when they were genuinely capable of doing some and their medical advisors agreed. It might even save more money and cost less to implement than the current punitive scheme. I wonder if anyone in govenment has looked at this?

    The current system makes a lot of people more ill and shortens lives. What is that all about, particularly when there are few jobs about even for the able-bodied?

    I have experience of "permanent health insurance" and the best I can say is that the insurance people I've met are not remotely interested in my real state of health or in offering anything that might help me(as opposed to force me)back to work. They just want to catch me out or find an excuse not to pay up. They pay so-called "independent" doctors to write reports that misrepresent my state of health.

    That's just like the insurance industry inspired benefits system we now have and it's rubbish.

  21. Yes Sue, it is shocking about ESA time limits from what I have seen it will be about a million people who will not get any money. So first poor sods will be next april, those moving from Incapacity will be counted from the date they moved. So thats a huge amount of people in next few years losing all money.

    I have been trying to read about how it effects single people, it seems WRAG is time limited to a year then you get a new medical. But in theory you could still have say 15 points and be put back in the group and have another year of interviews and things to do? Or is it only ever a year and then JSA?

  22. Hang on, I'm confused. I thought it was just "contributions-based" ESA that was time limited. Are you saying that ALL ESA, even income-based ESA, will be time-limited?

    Because if that's the case, then... geeez.

  23. No sorry you will be able in theory to get income based ESA if you have nothing else to live on. Found this today...

    "It was never intended that ESA for those in the Work Related Activity Group (WRAG) should be paid for an unlimited period to people who, by definition, are expected to move towards the workplace with help and support.

    Government intervention is required to help ensure that ESA is paid for a TEMPORAY period for those placed in the WRAG, thereby encouraging a return to work and stopping people being trapped on benefits for a lifetime."

    I was confused before it seems some goverment documents are averaging our lovely WRAG stay for about a year in which time we supposed to have made enough progress. My point was unless you have a condition that has made any changes odds are you will end up again as piggy in the middle expected to show willing and attend interviews and work related stuff yet never actually getting well enough to do any.

    Unless of course in a few years time they change the medical again to make it that its support group or JSA. In fact the more I read about work group more it is similiar to JSA just less appointments but still the same expectations and stress.

    Oh and for the record Mr Cameron, I'm not trapped on benefits I am being fed (just about) on benefits what is trapping me is my illness.

  24. We all know what will happen to advisors they will get more and more pressue to move us off benefits I don't suppose they will care if its onto JSA either.

    I would really like to hear people's stories in the work related group to see what support they are given and what happens to the ones that know they still will not be able to work in a years time. I'm trying not to get bogged down but think its important to fight what is happening on the ground especially since this is where most of us will end up sooner rather than later.

    We should be making a stand that unless you are very likely to be able to return to the workforce in a year - and thereby pass the next medical as Fit then you should be in the support group.

  25. Can I tweet this pls?

    " I'm not trapped on benefits I am being fed (just about) on benefits what is trapping me is my illness."

  26. Voucherise the Work Programme.

    Give the purchasing power to claimants so we have a stake in our own employment process (results are proven to be better for voluntary than mandatory participants already). Let providers - and the JobCentre - compete in an open market rather than winning regional contracts from the DWP so smaller/social provision has a serious chance and they can't fob us off with 'one size fits all' provision.

    If it's good enough to propose this system for school provision, why not adult employment?

  27. A broader solution (as my prior comment seems to have been eaten) is to simply copy the Australian welfare system and administration entirely rather than cooking up the IDS brand of special welfare fudge he's calling a Universal Credit - which includes everything, but doesn't actually.

    Costs are low, software and admin are tested and stable just hit copy+paste. It's a bit tougher (mobility component for the Disability Pension is only paid when in work for example) but also fairer (there is a TWO-year linking rule, so you can move in and out of work as you are able and Centrelink will reinstate your claim no questions asked). The earnings taper is also a lot more sensible.

  28. That sounds very interesting Deux - do you have any links? I have a researcher working on other models from abroad.

  29. Just vote and oust the Republikkkorps, we need to change the dynamics of how corporations serve the people and the govt , not control the government and enslave and oppress the people.

    First it begins with fear , and then hate, then disparity, then cultural warfare , then class and group warfare.

    and fascist conservative policies to control the wealth and the people.

  30. I'd love to see a more flexible benefits system. When I am able to do some work, reduce my benefits. For example, say I get £100 of benefit each week and then I have a good day and earn £50, I should only get £75 from benefits. A standard bank account would be able to look into any money I deposit, half that number and subtract it from my benefits. I get a real reward for working, but I don't have to worry about losing all my money.

    I'd also welcome genuine flexible working hours so I can cope with any waking up issues I might have, rest when I need to and take time off for hospital stays and doctor appointments without worrying.

    I would love to work if I could find a job that catered to my needs.