http://diaryofabenefitscrounger.blogspot.com/

Also if you have the time please take the following actions against the one year time limiting ESA , there are still a few days to make you views known.

Below is again from the Diary of a Benefit Scrounger

 

Six days to get rid of the 12 month time limit to ESA I know we're all a tad busy ;) But on 11th Jan, the other campaign we fought so very, very hard will see a vote in the Lords. Our brilliant supporter Caron over at Caron's Musings wrote this so that I could cross post it - knowing how busy I would be with the DLA campaign. In all the excitement, do see if you can manage to do any of the things Caron put together for us. In particular, please contact Lib Dem peers and remind them how vital it is to us that they keep their promise and vote against time limiting ESA. If they cannot rebel, we beg them to abstain. Next Wednesday, 11th January, the House of Lords will be debating the Welfare Reform Bill. It's expected that the controversial clause time limiting contributory Employment and Support Allowance to one year for those in the Work Related Activity Group, those people who are judged to have a limited capacity to work. This change does not affect the sickest and most disabled people in the Support Group. At the moment, if you receive contributory ESA (based on your NI contributions), you get around £90 a week and are eligible for that until you reach State Pension age. Now, you will lose your entitlement to it after a year. So, if you work for 40 years and pay tax and NI for all that time, you will only, when you need it most, get a year's support if the Government plans become law. This will take effect in just 3 months' time. That means that people who are too ill to work will effectively have to rely on their families to support them. Being ill is a pretty expensive business - if you need to have regular medical treatment there's transport costs affected with that. Also if your mobility is affected, you will need your house to be warmer. Not want. Need. I think depriving sick people of the support they get from the State based on an arbitrary time limit is wrong. It flies in the face of everything I believe as a liberal in terms of looking at the person and what they need. Most people, thankfully, do recover from illness within a year but some don't. It certainly took me two years after contracting Glandular Fever to feel remotely human again and it's left me with continuing health problems. Luckily I didn't need to claim ESA, but if I had, I am fairly sure I'd have had problems proving eligibility because of the fluctuating nature of the condition. If Sue Marsh, who suffers from really severe bowel disease, trouble convincing the authorities that she's ill, then we have to suspect that the system is very flawed. Sue isn't my only example. Four years of working as an MP's caseworker provided me with many examples of the wrong decisions being taken and overturned after a lengthy and stressful appeals process. The best argument I've heard against the time limit was put forward by Ken Reed, the new Chair of RNIB Scotland. He and I speakers at a fringe meeting on welfare reform chaired by Secretary of State for Scotland Mike Moore at the Scottish Lib Dems' Autumn conference. Ken said that if you became blind as the result of an accident today, it would take a year just to get used to being blind, let alone being ready to get back into the labour market. At our Federal Conference last Autumn, we passed a motion which called upon "Liberal Democrats in Government to oppose an arbitrary time limit on how long claimants can claim Contributory ESA". To me, that means that our people in the Lords should vote against the time limit. The views of Conference are pretty unequivocal and the motion was passed with very little opposition. If you haven't done so already, please get in touch with Liberal Democrat members of the House of Lords.  A full list is here. Tell them briefly why you think this time limit needs to go. Bear in mind that previous votes on the Welfare Reform Bill, including the one where 14 Lib Dem peers defeated an element of the Housing Benefit proposals, have been very, very close. It is possible for this vote to be won. We members can encourage that process so I would urge you all, again, to write to as many peers as you can, to give them an indication of the strength of feeling in the party. Please feel free to copy and paste this post into e-mails, tweet it, share on Facebook and spread the word in as many ways as you can think. We don't have long, but if we don't get rid of this time limit, sick people will start to suffer in less than 3 months' time. That should be enough motivation for us to devote some time to this today.

 

Source http://diaryofabenefitscrounger.blogspot.com/2012/01/six-days-to-get-rid-of-12-month-time.html#comment-form In the comments section of the above website you will find a list of peers who have e-mail addresses January 10th Never doubt that a small group of thoughtful, committed people can change the world. Indeed, it is the only thing that ever has. Margaret Mead I hope that the previous entry is not too confused, I had limited time in which to prepare and present the above information. I hope some of you took part. I emailed my MP with the report and have been writing to members of the house of lords since before Christmas. As those of you know who regularly visit this blog writing is enormously difficult for me because of OCD and other medical conditions. But the need is urgent as these radical, unjust and draconian welfare reforms need to be challenged. We need to show solidarity with one another to defend ourselves from the onslaught of abuse that has been directed at people with all kinds of disability, even children and cancer patients have not been spared, and there is not one political party on our side. Apologies to visitors for whom this is of no interest though if you suffer with a mental health problem of any signicance this will most  likely  effect you either now or sometime in your life. Obviously internatioanl visitors may have found little interest, though I personally take interest in what is happening to people with both mental illnesses and physical disabilities wherever they live as right now life is a struggle for most of us who are ill in some way because of the recent financial world events and the threat these have on our already precarious standard of living. I am weary today and suffered with a headache yesterday and through the night considerable pain so will probably write little else today. I know that perhaps the formatting and other things are off on this page but today I feel too depressed to even obsess about this. Don't forget the Vigil & Lobby of the Lords & MPs on January 11th concerning the welfare reforms, for details see 7th January Entry.  If you are able to go please do so If anyone wishes to have a PDF copy of the Responsible Reform report click the links below Responsible Reforms report Responsible reforms report press release You can catch up on what is happening and add your comments about what you did yesterday by clicking the link below: diaryofabenefitscrounger.blogspot.com/ Also of interest concerning the campaign was a recent article in the Guardian guardian.co.uk/commentisfree/2012/jan/08/disabled-people-welfare-reform-sham 10 am update to the above I have just received an e-mail from Sue at Diary of a Benefit Scrounger regarding further action today concerning the Spartacus (Responsible Reform) Report. Now I do not have an account with Twitter and know nothing much about it or how it works as making statements with about 150 characters is really beyond me. I can't be that concise. Therefore to explain the situation I will paste the information directly from Diary of a Benefit Scrounger into this entry and ask that if any of you have a twitter account to please take part. If you do not have a twitter account you can pass on links to the report and explain the campaign to people in forums, blogs and other relevant places. PDF files Responsible Reforms report Responsible reforms report press release HTML Links http://tinyurl.com/78erjru Shortened Report - Responsible Reform (accessible version) http://tinyurl.com/86h82gb Shortened Press Release link (accessible version)   More information about today's action Spartacus Report - Day 2   Yesterday was absolutely wonderful. For the first time, we broke through and really found our voice. We trended No.1 on Twitter and kept trending at 2 throughout the day. The support from celebrities and journalists and other bloggers was humbling. Today, we have a chance to really explain our issues, but despite our desperation and fear we MUST remember that our issues are new to most people. We must trust that the report has it's own strength. It is backed by Disability Alliance, representing over 380 charities. Scope, Mind, RNIB, Sense, National Autistic Society, ME Action Papworth Trust and many, many more endorse our report and share its concerns. Politicans are supporting us. Lords are supporting us. We must give them every chance to hear our evidence and act on it. The report raises some very serious issues and it is those issues we must explain. Today, we ask anyone who read and was shocked by the #spartacusreport to wear this twibbon http://twibbon.com/join/spartacusreport and stand with the sick and disabled people of the UK have fought so very hard for this one chance to be heard. We only have a few more days. Lords return tomorrow and the issues we have raised for so long will face votes. If we work together, no matter how exhausted we are, no matter how frightened, we can say we did all we could to make our arguments eloquently, reasonably and most importantly - based on evidence. Evidence that has been painfully lacking in this debate so far.  Can we show today that we are an electorate? That we can be seen, that we can be heard. Every twibbon is a "vote" for the #spartacusreport If you are sick and disabled wear the twibbon. If you realise that one day, at any moment, you too could face illness or disability and that our fight is your fight, please wear the twibbon.  If you are concerned at the lack of rigour and openness of our government, please where the twibbon If you want us to be heard, wear the twibbon.  Keep tweeting, keep sharing and trust that if we work together, we can be heard. Sick and Disabled people can speak for themselves and for the first time, the #spartacusreport allows us to do that. Take this opportunity, take this platform and use it wisely.  I am Spartacus, and I will keep trying everything I can to protect our futures   Source diaryofabenefitscrounger.blogspot.com/2012/01/spartacus-report-day-2.html#comment-form January 11th The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy.  Martin Luther King Jr. Both Sue from diaryofabenefitscrounger and Kaliya of thebrokenofbritain blogs have been taken ill as a result of all their strenuous and dedicated efforts concerning the Spartacus report. Read more about this and watch a video by Kaliya diaryofabenefitscrounger.blogspot.com/2012/01/spartacus-day-2-urgent-update.html? For more information about the report: mind.org.uk/news/6231_mind_backs_disabled_campaigners_dla_report  liverpoolstudentmedia.com/2012/01/report-shows-opposition-to-disability- benefit-reforms-hidden-by-government/ alastaircampbell.org/blog/2012/01/09/disability-campaigners-expose-shamcover-up-of-coalition-consultation-on-benefit-reforms/ ekklesia.co.uk/node/16008 (Don't be put off by the annoying survey pop up, ignore it and it will go away - unless of course you wish to take the survey). The above list of links to information about the report came from  allbigideas.blogspot.com/where you will find further links. Scroll down the page dated January 7th I am sorry to hear that both Sue and Kaliya  are both ill, but I am not surprised as this endeavour must been a monumental task. Where they have found the strength and determination to do this I do not know considering the severity of the illnesses from which they both suffer.  The disabled community will be for ever grateful for their selfless hard work on their behalf. Many thanks to Sue and Kaliya I hope you both recover soon . Also thanks to everyone else who was involved including any one who took any action however small, all have helped in this momentous endeavour. It looks as though all our efforts have paid off The most amazing result of all has been this article in the Daily Mail!!!  the first press coverage of the Spartacus report! Unbelievable! finally they are giving the respect and attention to disabled people that they deserve. Please read: dailymail.co.uk/debate/article-2084706/Were-desperate-welfare-reform-Mr-Cameron-hiding-truth-way-achieve-it.html Shame on Cameron, Duncan-Smith, Osborne, Freud and whoever else is responsible for his nightmare. You should be ashamed that you have blighted the lives of many people who are sick and disabled, who live in constant fear and insecurity. It is sickening that people such as Sue and Kaliya have had to jeopardise their health in order to bring to light the devious deception of the government, in particular Cameron and the other cronies named above who amongst their wicked reforms have tried to scrap DLA . All the welfare reforms without exception are a detriment to disabled and sick people leaving them financially insecure. Its a disgrace, a bloody scandal and is not the behaviour that is expected from a country that calls itself civilised. More About the  Spartacus report The report is a detailed investigation into the Government’s consultation on Disability Living Allowance (DLA).  It  looks at the responses of more than 500 people and groups to the government's consultation on DLA reform. Obtained through the Freedom of Information Act, the report argues that the Government has downplayed the level of opposition to the reforms expressed by individuals charities and other organisations. The report indicates that the government have deliberately misled MPs and Peers over the lack of support for the abolition of DLA  during its Consultation phase. The report  shows that coalition Government broke its own code of consultation over the DLA reform.  Our report shows that : -The Government broke its own code of consultation over the DLA reform -The Government has entirely misrepresented the views submitted as part of the consultation, giving a partial and biased view. -The Government claim that DLA must be reformed as claims has risen 30% in 8 years - we find that these statistics are entirely misleading and give a "distorted view" -There is overwhelming opposition to the new benefit, Personal Independence Payments -Some elements of PIP appear to already be going ahead, despite a rejection of the plans and before legislation has passed. -The Government are repeatedly warned that proposals for PIP may break International and UK equality and Human Rights legislation Read More diaryofabenefitscrounger.blogspot.com/2012/01/i-support-spartacus-report.html "The UK Government has been accused of deliberately concealing the extent of opposition to reform of a key disability benefit. Independent analysis undertaken by a team of disability campaigners has claimed that consultation on the future of the Disability Living Allowance was thick with criticism from disabled people’s organisations, charities and individuals, but many of these concerns were concealed." "The report details what researchers describe as “overwhelming opposition” to replacing DLA with a new Personal Independence Payment (PIP). The Government plans to cut spending on DLA/PIP by 20 percent." Read more periscopepost.com/2012/01/spartacus-report-government-buried-opposition-to-disability-living-allowance-reform/ The ‘Responsible Reform’ report is essential reading for everyone with an interest in Disability Living Allowance (DLA) reform including the Government and Department for Work and Pensions Select Committee. It is a vital contribution to the debate on reform and a huge achievement for the volunteers who have produced it.  As well as forensically deconstructing many of the arguments offered by the Government for their proposed reform, the report shows that much of the rise in claimants over recent years has been down to better access to the benefit for people with mental health problems, whose needs are often fluctuating and invisible. Rather than getting out of control as the Government claims, DLA has been increasingly going to people who really need it. The proposed 20 per cent cut to the budget will have an enormous impact on many people with illnesses and disabilities, and we remain very concerned about the unintended consequences this could lead to. Mind’s Chief Executive Paul Farmer mind.org.uk/news/6231_mind_backs_disabled_campaigners_dla_report Just uploaded yesterday an easy read version of the Responsible Reform Report – also known as the Spartacus Report. It is important that everyone concerned reads this report However, some people won’t have had the chance to read the report first hand, such as people with learning disabilities, low literacy or visual impairments, who may find reading dense text difficult and prefer more accessible “easy read” formats. That’s why we were proud to be approached by the activists behind the Responsible Reform Report and asked to translate the report’s main findings into an easy read version United Response I think it is worth any of us reading this simplified version to get the gist of what the report is about as for many of us who suffer from severe anxiety and depression it can at times be very difficult to read through a complex report and the easy read version provides good basic information and background to the report.   SPARTACUS REPORT - EASY READ VERSION   The wonderful people at United Response have pushed themselves flat out over Xmas to present our report - Responsible Reform - to parliament. Here is the easy-read version.  : http://www.unitedresponse.org.uk/2012/01/the-spartacus-report-the-easy-read-version/   From the http://diaryofabenefitscrounger.blogspot.com/ Please pass this on to anyone and everyone who might be effected or interested. Please read and continue to tweet, talk or other wise disseminate the Spartacus Report including the easy read version: PDF files Responsible Reforms report Responsible reforms report press release I have a splitting headache today so again I am going to have to leave it there. Don't forget the Vigil & Lobby of the Lords & MPs today concerning the welfare reforms, for details see 7th January Entry.  If you are able to go please do so. We all need to continue this fight, against this evil govenment, who have no compassion concerning those who are in need. Anonymous: internet forum   The probability that we may fail in the struggle ought not deter us from the support of a cause we believed to be just.  Abraham Lincoln 11 am Up Date Please read the following and take action The house of Lords are to Vote today concerning the  Time Limiting ESA   THE IMPACT OF TIME-LIMITING ESA   Today, peers will vote on whether or not to time limit Employment and Support Allowance. This is a short, bullet pointed briefing.    Whatever else you do in you careers, the sick and disabled people of Britain beg you not to do this.    -700,000 people with serious illnesses and impairments will be affected by this policy, many losing any right to an independent income. http://www.dwp.gov.uk/docs/esa-time-limit-wr2011-ia.pdf -The means test is set at just £7,500 per year, meaning that a partner must support an unwell or disabled loved one if they earn more than this. -Families already overwhelmingly living in poverty will lose £4661 per year. This is three times as much as higher rate taxpayers will lose in child benefit. -This policy only affects working families and savers as it only applies to those who have contributed NI or have savings over £6000. -It is a disincentive to work  and will only encourage families to break down http://www.dwp.gov.uk/docs/esa-time-limit-wr2011-ia.pdf   -It overwhelmingly affects the poorest most. The % impact falls from the highest in the 1st decile of earnings to the lowest in the 10th.   -It estimates that 60% will simply switch to income based ESA and not be affected.   Those individuals with low or no other income may apply for income-related ESA. However, it is expected that only 60 per cent of people losing their contributory ESA will be compensated by income-related ESA, even partially.   - The report concludes that 90% of those placed into the Work Related Activity Group (WRAG) will be affected.   -ALL groups will lose income on average through this measure.   -It is based on an assumption that 50% of claims will be appealed!!! How are they able to go forward with a system this inaccurate?   -The government claims that 700,000 will be affected by the Time Limit - a figure previously hotly debated, ranging from 400,000 to 1 million. It is expected to cut benefits for those not fully fit for work by 1.2 billion per year.   - The government acknowledges, that this is a disincentive to work and may push couples into divorce or into giving up on work altogether. However, they admit that they have no idea how significant this will be.   -Even though they are still ill, those who do not qualify for income-related ESA will have to move onto the Work Programme.   -Almost half the contributory only ESA customers in the WRAG are aged 50 to 64, so the policy will impact on more people in this age group.  As a result the average loss in household net income for those aged 50 or over is slightly higher than for other age groups - precisely the group that will find it difficult to get back into work due to their age.  It is likely that a higher proportion of older recipients will not be eligible for income-related ESA and will see a loss in income.    -Sick and disabled people with limited capability for work are conflated with jobseekers as ministers claim ESA must be brought into line with JSA. -The government admit that 94% of those affected will not have found work by the end of the year. They also insist that it is irrelevant whether or not they have recovered. http://www.dwp.gov.uk/docs/esa-time-limit-wr2011-ia.pdf   -The government admit that there is only a possible indirect effect of increasing movement back into work for those affected, but state however, this effect is uncertain and has not been quantified. -The only justification ministers have given for this policy is that "We can't afford it". -People with serious, lifelong, and degenerative conditions will all be affected by this. People with MS, Cancer, Parkinsons, Bowel Disease, Kidney Failure, Heart Disease, Lung Disease, Schizophrenia, Bi-Polar and many, many more conditions will lose benefits, left in limbo until they are judged unable to do any kind of work at all. http://www.publications.parliament.uk/pa/cm201012/cmselect/cmworpen/1015/1015vw44.htm   -7,000 cancer patients will be affected by the one year time limit.   -However, people with heart disease, kidney failure, Parkinson’s, MS, Bowel disease, Schizophrenia, Bi-Polar, Cerebral Palsy, motor neurone disease and any other condition you could imagine may also lose all of their support after the year is up.   -While assessments are so flawed, a time limit will only compound an already desperate situation. 40% of rejected claims go to appeal and of those, up to 70% win with representation.   -The assessment system is so backlogged, that targets are already being missed, with many fewer people being assessed every week than intended. With the tribunal system also under so much strain due to the vast number of appeals and the work programmes warning that over 90% may miss targets for placing the sick and disabled in work, this is a system in crisis. A one year time limit may well be the final straw.   -Time Limiting will be retrospective. Those who have already been on contributory ESA for over a year, will find that their support stops in April.   -Despite this policy still being debated in the House of Lords. Ministers warned those who may be affected back in September by letter at a cost of £2.7 million.   -Possibly the most astonishing part is the claim that the Social Impacts did not need to be investigated, neither under the categories of Health and Well-being, Human Rights or the Justice System.   -The government admit that they did not consult with any external stakeholders prior to the Chancellor’s announcement in the House of Commons on 20 October 2010. They say it is only now that they have started to engage with both internal and external stakeholders.  (Oct. 2011)   -Most people in receipt of contributory ESA for more than a year are likely to be covered by the Equality 2010 disability definition and so these reforms have considerable significance for disabled people - those who are unable to work due to their health condition or disability.   Chris Grayling has said that assessments used to determine whether or not someone is "fit for work" or not are "Not money driven".  However, when asked if after one year these vulnerable sick or disabled people would have found work or even be fit for work he replied it…"is not about recovery times. It is not about a decision that 12 months is an appropriate time for recovery. These are people who have other means of financial support, so what we have sought to do in difficult times financially, and by taking tough decisions,...is hold the line on this difficult issue and do not accept the right hon. Gentleman’s amendments. We do not believe that financially we can do so. Full transcript here : http://www.publications.parliament.uk/pa/cm201011/cmpublic/welfare/110503/am/110503s01.htm   IT IS ALL TOO EASY TO GET IMMERSED IN THE STATISTICS WITHOUT REALLY REALISING THE HUMAN COST OF THESE PROPOSALS.    HERE IS A REAL LIFE EXAMPLE OF THE IMPACT.   I worked for nine years. I have a degree and nearly killed myself trying to forge a career in the face of terrible illness. In the end I had no choice. Working was killing me. Friends and family pleaded, begged even, but it took me a long time to accept that I could no longer work. Giving up on my hopes and dreams was the single hardest thing I ever had to come to terms with.   We had our own house for years - a beautiful beamed fisherman's cottage by the sea - but we had to sell it before it was repossessed, as our income fell from £46,000 a year to 21k a year. The equity we did manage to save is eaten away a little every month as we have to make up the shortfall in our income. But we are trapped. I can't work. More accurately, no-one will employ me.   My husband Dave is my carer and has to support us financially whilst coping with the trauma my illness brings into our lives and the lives of our children. Partners like Dave, who are carers too, often need to take lower paying jobs to look after us, jobs where they can work 9 to 5 and get time off at very short notice. Their careers suffer too.   I've lost count of the times people have urged him to give up work too, begged him to stop stretching himself so thin. Dave has had two breakdowns trying to hold our family together, but for him, working is the most important thing he can do for us. It gives him pride and it stops us all from feeling like total and utter failures.   For my family (and DWP estimates show that another 700,000 families like mine will be affected) the impact of losing that £388.45 a month will be devastating. We already live below the official poverty line and can't pay our bills.   Soon we will have no savings left and taking away £4,661 a year from us will mean we lose everything. As I mentioned, it is three times more than higher rate tax payers will lose in child benefit yet this is a cut that will affect some of the poorest households in Britain.   My family would end up costing the state 5 times more in total than we do now (around 26,000 a year) just because it will force us to give up on the idea of work. We never wanted it to be that way. We wanted to remain a working family. We wanted to pay our way, but the assessments failed us and successive "policies" failed us and now the cuts will fail us. This one policy alone - time limiting ESA for working couples or families  -will fail us so spectacularly that it will bankrupt us. We will become entirely dependent on the state for everything.   That's why our partners often keep working, despite it being 100 times harder than giving up. We don't want to become 100% dependent on the state.   Remember, this cut ONLY affects WORKING couples or families who have had the misfortune of someone becoming too ill to work.  It is a disincentive to work that goes against everything the coalition says they want to achieve.   I urge you all to reconsider time limiting ESA.  Please send this briefing to Crossbench and Liberal Democrat Peers this morning. Here is an interactive map with contact details http://www.google.com/maps/ms?msid=204639635371731701782.0004ada20165bf2c184ef&msa=0&ll=54.610255,-2.680664&spn=9.999969,28.54248   Do the best you can. Source of the above diaryofabenefitscrounger.blogspot.com/2012/01/impact-of-time-limiting-esa.html January 12th We won! , We Won! For once good triumphed over evil, justice over in justice Yesterday, Lords voted to overturn the one-year time limit to contributory Employment and Support Allowance proposed by the government. They were defeated by a staggering  224 votes to 186. We had lobbied on this issue more than any other. Yesterday, we posted a full briefing on why. Read more about what happened in the Diary of a Benefit Scrounger: http://diaryofabenefitscrounger.blogspot.com/2012/01/our-response-to-government-today.html Try and take action using some of the suggestions in the above blog which I have quoted here, but please click the link above and read the entire entry Do what we do best and make our case honestly. Re-post articles, write short statements, blog, contact friendly journalists and see if they will drop a little of the DWP spin angles. Contact supporters and let them know we won and what it means. Own the internet. It's all we have. Also read guardian.co.uk/society/2012/jan/11/disability-welfare Most of this success is down to the campaigners led by blog writers Sue (Diary of a Benefit Scrounger http://diaryofabenefitscrounger.blogspot.com/) and kaliya,  (The Broken of Britain) http://thebrokenofbritain.blogspot.com/) though many others took part in many ways both great and small, you can read their stories here in a blog entry entitled From-Bed-Activism :  http://diaryofabenefitscrounger.blogspot.com/2012/01/from-bed-activism.html I have another awful headache to day so yet again I must leave it there it has been an exhausting week.  I have done the best I can to help the campaign but have been impeded to some degree by headaches and my OCD which make writing slow. I have though managed to add something to my blog most days. I have e-mailed and sent the Spartacus report to my MP, I have emailed and wrote letters to peers. I have just written to a couple of newspapers, and hope to write to more, asking them why they have not reported the Spartacus report and the story of determination and selfless dedication behind it despite the considerable detriment of illness suffered by all involved in this endeavour, which has been nothing short of  courageous. It is high time the public were made aware of these huge efforts undertaken by a group of very disabled and sick people. Both Sue and kaliya have been ill as a consequence of their exhausting activities and two other prominent helpers are in hospital, while another has not been heard from for a few days. Many of the people supporting this endeavour by disseminating information via social media have done so from their beds at great expense to their health and well being. In comparison my efforts are minimal. But every action helps so please do continue with the ideas above Up date at 10.36 Decided it is best to cross post the Diary of a benefit Scrounger entry referred to and linked above as it is much easier for some people who are not used to the internet, though you are advised to read the original as you can than both read and comment and access other similar blogs: http://diaryofabenefitscrounger.blogspot.com/2012/01/our-response-to-government-today.html OUR RESPONSE TO GOVERNMENT TODAY   Yesterday, Lords voted to overturn the one-year time limit to contributory Employment and Support Allowance proposed by the government. They were defeated by a staggering  224 votes to 186. We had lobbied on this issue more than any other. Yesterday, we posted a full briefing on why. You can read it here : http://diaryofabenefitscrounger.blogspot.com/2012/01/impact-of-time-limiting-esa.html When we started campaigning, we had four very, very clear objectives. There are other things that urgently need to be changed in the Lords, and we thank them for their forensic attention to detail that means these other issues are not being ignored. Today, the DWP and the very highest ministers in government will be everywhere trying to mitigate the damage of yesterday's defeat. You will hear their misrepresentation of us on every TV show, in every paper. You will cringe at every inaccuracy, burn at every line of spin.  Mostly, I know that you will burn at the injustice of not being heard. You will wonder - as we have always wondered - why the mainstream media persist in ignoring truth and reason and evidence. Journalists will not be queueing to ask how the defeat came about, to ask the campaigners who almost certainly made it happen. You might burn too, when you hear Labour claim this as their victory.  None of that matters. The public were never ours to lose. We have come this far without them, by making reasonable, calm, evidence based arguments to the people who really matter, the people with all the power. We have come to this point by engaging with politicians of all colours, by owning social media and using it to make our own news. Today, you have truth and justice on your side. The Government do not. No Government is defeated on the scale we saw last night, with the very strong majorities we saw, by accident. It was the undeniable injustice of the Government's plans that convinced the Lords.  Do what we do best and make our case honestly. Re-post articles, write short statements, blog, contact friendly journalists and see if they will drop a little of the DWP spin angles. Contact supporters and let them know we won and what it means. Own the internet. It's all we have. Perhaps a short note to some of the peers you lobbied thanking them? We have been insistent and a thank you is always nice. Trust in our case, trust in the evidence we have presented, but most of all trust yourselves. Governments are not defeated often in the way ours was yesterday and you did it. Without the TV news, without much of the printed news, without an opposition, whatever Labour MPs claim today. The Labour Lords worked tirelessly for us however and they deserve a huge thank you. The following briefing is one we posted months ago, that outlines our key concerns with the welfare reform bill and the measures affecting sick and disabled people today. Feel free to use it, share it in any way you like. The Government - and media - might like to notice that we have already won the first one, The Spartacus Report directly addresses the 2nd one, and last night's vote casts huge doubt on the third. We are not an aimless campaign group with no real goals, we are not unreasonable or aggressive. We are the sick and disabled of the UK. We are Spartacus. Briefing of our 4 main objectives : Whilst some of the bill might be helpful, I want to be very clear today about which parts sick and disabled campaigners feel are unacceptable : 1) Removing Disability Living Allowance mobility payments from adults in residential care. An adult who needs to live in residential care will have extensive needs and are often amongst the most severely disabled. The mobility component of DLA afforded them their only freedom, allowing them to choose to fund a power wheelchair otherwise unavailable on the NHS, or to pay for taxis or transport to get out now and then. Taking this away would leave the most vulnerable disabled people effectively housebound. There is no support for this change anywhere - charities, independent benefit reports and even the government's own advisers have called for this to be removed from the bill 2) Scrapping DLA entirely and replacing it with Personal Independent Payments (PIPs). DLA is a very effective benefit with fraud rates of less than 1% (DWP own figures) It is already incredibly hard to claim and the qualification criteria are very narrow. The government have announced that DLA claimants will also soon face assessment and that the overall number of claimants will be reduced by at least 20%. The government's own advisory committee concluded that they could find no justification for this reform and have asked for clarification from the government. If a benefit is already very efficient, yet a government announce a 20% cull before a single assessment has even taken place, we conclude it can only be a cost cutting measure that will ignore genuine need. 3) Time limiting contributory Employment Support Allowance (cESA, previously Incapacity Benefit) to 1 Year Many people who need to claim ESA have "long term variable" or chronic illnesses such as MS, Parkinson's, Bowel Disease, Leukaemia or severe Mental Illness. These conditions often do not go away after a year and sadly, often get worse over time. A high percentage of those with these conditions are being found "capable of limited work" under ESA, and not qualifying for unconditional support (known as the Support group who are not affected by the time limit)  but after 1 year, if they have a working partner, they will receive no ESA whatsoever. All of their benefit will simply be stopped, a loss of just under £5000 a year. 4) ATOS assessments are "unfit for purpose" and a better way of assessing need must be implemented. ATOS are the private company charged with assessing over 1.5 million sick and disabled people during this parliament. -The assessments are not necessarily carried out by a doctor. -40% of rejected claims are going to appeal with up to 70% of those decisions being overturned. -Assessments are humiliating and degrading causing great anxiety to those genuinely in need. -Just 7% of claimants are being found unfit to work. -Testimony from Consultants and GPs is often ignored entirely. -People are dying before lengthy appeals can be heard. -Even the professor who designed these assessments calls them a "complete mess" -The descriptors exclude many serious, long term conditions or disabilities. This means that many serious conditions are simply unlikely to qualify. There are other problems with the bill - capping housing benefit; re-classifying "mobility" so that those who use their wheelchairs too efficiently can be classed as "fully mobile"; removing an age related payment from ESA; scrapping the Independent Living Fund; cutting community care provision; cutting the Access to Work programme and many more - all of which will hurt sick and disabled people disproportionately, but the four points above MUST be addressed before the Welfare Reform Bill is passed. They are causing or will cause real hardship. They will not achieve savings as pressures will only be shifted to the NHS or social care provision. They will increase homelessness, mental illness and poverty amongst this most vulnerable group of all They will leave many in genuine need without support They reduce the independence, standard of life and dignity of those we have a basic duty to protect. Remember to tweet using #spartacusreport and when sharing links or emailing. Thanks, Sue My Facebook page is currently blocked, but you will find all the same articles at http://benefitscroungingscum.blogspot.com/ Please use this slink to post to Facebook Please also sign Pat's Petition http://epetitions.direct.gov.uk/petitions/20968 calling for a pause to the reforms until they are safe.     January 13th Because of OCD I do not normally blog on day 13   let alone on Friday the 13 however I am so enraged after listening to the interview on BBC News Night with Sue Marsh and Greyling, Tory MP Employments Minister. You can watch the interview here: http://blacktrianglecampaign.org/2012/01/13/sue-marsh-on-newsnight/ The interview was clearly biased towards the usual Tory rhetoric, which sadly seems to be the case with most of the media, with the exception of the Guardian and the Scottish Herald which incidentally are the only too newspapers with a story about the Spartacus report. heraldscotland.com/news/home-news/spartacus-report-reveals-criticism-of-benefit-reform.  guardian.co.uk/commentisfree/2012/jan/08/disabled-people-welfare-reform-sham Sue Marsh did amazingly well during the interview considering she was abruptly cut off several times while that awful Greyling man was given by far the majority of the time to speak. I say man, but are those so hell bent on making the lives of the disabled and chronically sick a misery of emotional torment and financial insecurity really fit to be called a human beings? Rather reminds me of one of my favourite quotations I often use here on my blog Human beings are all members of one body. They are created from the same essence. When one member is in pain, The others cannot rest. If you do not care about the pain of others, You do not deserve to be called a human being. Sadi - a major Persian_poets of the medieval period. He is recognized not only for the quality of his writing, but also for the depth of his social thoughts. Clearly Greyling, along with his fellow uncompassionate hard hearted Tory cronies, does not give a dam about the suffering of his fellow human beings. What really made me angry was the way that this evil man - and there is no other word for these people unless it is psychotic - is so determined to destroy the lives of people who are not able to work because of serious and CHRONIC illness and disability that he deliberately tried to hide the serious implications of the one year time limiting ESA by droning on about people having savings or gaining an inheritance. Both of which in this climate of austerity are highly unlikely for a significant percentage of the population. I know we have never had any savings despite the fact my husband worked all his life from the age of 15 to 58 when he was made redundant by the firm he had worked for for twenty-five years. In all that time he had but three months of sick leave which he never claimed as his employer paid his wages. The last twenty-five years he worked 60 hours per week! We had no money to save because even back than most of his wages went to pay the bills. Yes I had a tiny inheritance from my mother's run down corner shop, run down due to neglect because she and my father never had enough money to live on never mind keep the house in good repair despite my father working all his life, firstly in the shoe industry, in the days when we had some industry that is before the Tories destroyed it, than as a self employed corner shop keeper barely making enough to pay the bills. My parents were treated shamefully despite the fact that my father fought in WW2.  My mother's one and only request for help in keeping her home warm was turned down. The inheritance just about finished our mortgage payments. I would imagine that most people's inheritances, are as inconsequential and go to paying up a mortgage. A lot of people have no inheritance, my husbands' parents left him nothing except a small insurance payout of about £200. They too had worked all their lives and had nothing to show for it at the end as do most working people. Most shocking was the fact that Greyling  deliberately missed the most devastating aspect of the time limiting ESA and that is, whether it be one or two years, there will be a serious financial consequence as it is a means test benefit set and to only £7,500 per annum, after which a partner must support a disabled loved one if he or she is still to ill to return to work if they earn more than this. -700,000 people with serious illnesses and impairments will be affected by this policy, many losing any right to an independent income. http://www.dwp.gov.uk/docs/esa-time-limit-wr2011-ia.pdf -The means test is set at just £7,500 per year, meaning that a partner must support an unwell or disabled loved one if they earn more than this. Everyone should have the right to an independent income for the sake of some dignitary. Such dependence could lead to abuse and the breakup of families Read more about the implication of the one year time limiting ESA diaryofabenefitscrounger.blogspot.com/2012/01/impact-of-time-limiting-esa.html   To reiterate: The one year time limiting ESA will be of a serious financial consequence as the means test is set to only £7,500 per annum, after which a partner must support a disabled loved one if they earn more than this. Can you imagine how difficult it will be for two people to live on say £7,550, just a small amount over the £7,500 ceiling. And yes even £1 over the ceiling will be counted. That's Two people living a tiny bit over £144 per week, about £576 per month. That is all the income they will have to pay the rent or mortgage both of which are huge expenditures, pay for heating, another enormous cost, also food which goes up by leaps and bounds every time you go shopping, not to mention cloths and other necessities. As for pleasures and entertainment no way. How the hell can two people live on such a small amount. The short answer is they can't. The cost of heating your home alone can set you back about £120 per month, that is what I pay to have the heating set to 60 F not very warm I would well imagine many people will go cold rather than turn on their heating. When you are ill generally you need extra warmth. No Greying kept that quiet didn't he banging on about inheritances. I wonder if that smug faced slick bastard would care to tell us how two people can live on 7,500. Thank Goodness the government lost on Wednesday below is a summary To sum up: the government has astonshingly lost three straight votes in the Lords. They are for the following amendments: • To retain automatic eligibility for ESA for young disabled people who are unable to work • To impose a two year time limit for ESA claimants, overriding the government's proposal that claimants be reassesed after 12 months • To exempt cancer patients from the proposed ESA limit. http://www.guardian.co.uk/society/2012/jan/11/disability-welfare   Baroness Meacher, an independent crossbencher, told BBC Radio 4’s Today programme: “Severely disabled young adults living with their parents would have no income of their own for the rest of their lives, to buy their parents presents, for example. We felt that was over the line.   “The British public do not accept the idea that the banks screw up and very disabled people pay the bill.” Read More telegraph.co.uk/health/healthnews/9009216/Welfare-reforms-defeated-as-vulnerable-asked-to-pay-price-of-bankers-failure.html Sadly the celebrations were short lived as the evil and morally corrupt government propose, in their version of the spirit of democracy, to continue to have their way with these reforms, despite the Lords opposition.   Grayling,  said the Government would consider the peers’ response but would press ahead with the reforms. The welfare reform bill is complex, a 500 page document , it IS really impossible for the majority of us to really comprehend the enormity of the scale of detrimental reforms that are being pushed through by fair means or foul. Most of the lords I wrote to concerning the one year time limiting ESA did not reply and of those who did , three in total seemed to not have a great understanding concerning the welfare reform, which to say the least is very unsettling . I wonder how many have read the entire document though, thankfully it went our way I admit I get confused and concerning the above information there may be some inaccuracies, so you are advised to verify this information. I may be getting the one year ESA and the automatic eligibility for ESA for young disabled people who are unable to work confused. I am not a writer, I have severe mental health conditions along with  fibromyalgia, migraine, chronic tension headache, neuralgia and arthritis of the jaw, the most prohibitive of which  concerning writing are headaches and the brain fog of the fibro, which in addition to my OCD often makes it very difficult for me to get my head round it all due to the complexity of the information and my difficulties with concentration and memory. Mental health conditions can be really incapacitating when you have to fight for your rights or even to apply for benefits. There are many of us who should be on DLA but people with our sort of problems are often overwhelmed by filling in the lengthy and complex forms in a way that clearly expresses our needs concerning the complex difficulties we have. The main point to remember is: Basically at the end of the day everyone who is on a benefit will have less money to live on  and many benefits have been scrapped. Most disabled people who are dependent on the state live now in fear, dread and insecurity. Their are few things more frightening than financial insecurity, particularly when you are ill and vulnerable. The fear of loosing your home is a terrifying thought to most people in this precarious society of ours but for sick and disabled people it is particularly frightening. The psychological damage that is being done to disabled, sick and indeed the unemployed is a subtle but wicked and inhumane crime against humanity and it needs to be stopped.  I hope we can all continue to work in solidarity to thwart the government in its insidious attempts to push through the welfare reform bill come hell or high water. "The Government has been defeated tonight because quite simply they tried to cross the basic line of British decency." Liam Byrne, the shadow work and pensions secretary The struggle continues We have to fight for DLA Please read and sigh the petition Petition the Minister for Disabled People to Recall the Public Consultation on DLA Reform We, the undersigned, urge the Minister for Disabled People to recall the Public Consultation on Disability Living Allowance (DLA) reform, and to cease work on reform of this benefit, due to serious flaws in the consultation paper. As such, the consultation questions are deeply skewed and any answers will be likely to support wholesale reform. This is both unfair and unwise, and will cause hardship for many disabled people. The case for reform has been criticized, and then completely demolished, by the various disability rights groups fighting reform. They accuse the DWP of building their argument without sufficient evidence. Please continue reading and sign the petition: petitiononline.co.uk/petition/petition-the-minister-for-disabled-people-to-recall-the-public-consultation-on-dla-reform/569/0aa4fc2026635b34c32b57a1e644d746 Also please take the following action if you are able to do so   Guardian looking for DLA Case Studies   The Guardian want to hear about how your DLA helps you. Full details are here. Please share this everywhere and lets get them a good selection of stories to choose from. Cross posted from http://samedifference1.com/2012/01/13/the-guardian-are-looking-for-your-dla-stories/   Source: diaryofabenefitscrounger.blogspot.com/ January 14th I really must do something about getting a blog. In case you had not realised, though you must have noticed that something is not quite right, this blog is created by myself as apart of my website using Microsoft Front Page website creation software. Whilst it adequately allows me to present some semblance of a blog it can be time consuming formatting every page. This is one of the reasons why you cannot access each entry into a separate page and there is no comment facility. However regarding comments; I would be unable to respond to too many comments therefore a lack of an opportunity to comment is deliberate. It takes me a long time to write comments to other blogs because of the problems I have with OCD, so for me right now this is not an option as the worry of it all would be too much Right now with this page there are problems with the formatting which I cannot resolve or it would take time to resolve though after some fiddling about his morning it is better than it was. This may be due to cutting and pasting from other websites and blogs which I usually do not do quite as often, but in the case of the welfare reform campaigns it is easier for me to do so in order to be certain that important information is presented accurately. However formatting takes so much time which makes it even more difficult for me to get an entry published. Most of the above entry was written yesterday but I could not publish it because I ran out of time because it took so long to prepare. With a regualr blog I could not of course manipulate updates in this way. However despite these problems I think it is time I at least signed up for a blog for my on-line Welfare reform, animal rights and environmental activities.  So soon hopefully I may endeavour to do this. Though it is not easy as my mind these days seems to be in a perpetual whirl of confusion with so many things I want to say but thwarted by both physical and mental health issues. So for now I carry on in the best way I can.  I rather doubt that anyone is reading much of what I say anyway, but I have to say it nonetheless. I am passionate about social injustice, animals rights and the environment and I need to write about these things. Right now I am so angry about welfare reforms here in the UK, in all my life I have never felt so much insecurity. It is depressing to live in a society that treats people in such an inhume way. A society so easily led by the callous behaviour of the over privileged who have never had to rely on benefits though they have readily taken them when it suits them. I can well imagine that Cameron takes his child benefits for all four of his children. Anyone else having so many children would soon be vilified. Why is it okay for the rich to reproduce as often as they wish. I think it shocking when single mothers get accused of having children in order to avoid working. Really is this idea anything remotely realistic, think about it, for a lousy meagre amount of benefit money a woman would have a child. Again it comes down to the misconception of how much money people receive on benefits. Incidentally a lot less than they do in other countries. It is so sad about Cameron's son that one hesitates to mention how he applied for DLA on his son's behalf despite the fact he is obviously financially able to have provided care for his own son. I believe he even took free nappies provided by the NHS.  The worst part is how he used his situation to make people believe that he cared about people with disabilities. I thought it might be interesting to go over a few misleading Cameron quotes:   "There are undoubtedly going to be some very difficult decisions. But in making these decisions I will want to, if I am elected, take the whole country with me. I don't want to leave anyone behind. The test of a good society is you look after the elderly, the frail, the vulnerable, the poorest in our society." And that test is even more important in difficult times, when difficult decisions have to be taken, than it is in better times." First speech as Prime Minister (2010) I want to make sure that my Government always looks after the elderly, the frail, the poorest in our country. More Cameron quotes A modern compassionate Conservatism is right for our times, right for our party — and right for our country. There are many in our country who can't work, who are incapacitated and as a compassionate country we should help them. This poster says it all Access a larger size flickr.com/photos/43207463@N06/6659559943/in/photostream I'm going to be as radical a social reformer as Mrs Thatcher was an economic reformer, and radical social reform is what this country needs right now. More like Hitler's ideology of social reform, see November 14th entry I think in any organisation it's right to set out what you stand for, what you're fighting for and bring that together in one document so that people can see that the modern compassionate Conservative Party is in it for everybody - not just the rich. You could have fooled me. Cameron has done nothing since his election except make the poor suffer, the poorest in society which will be the disabled and sick who have to survive on the pittance of benefits that Cameron is hell bent on drastically reforming so that the poor in every sense of the term will get poorer In the past we used to think of poverty in absolute terms - meaning straightforward material deprivation... We need to think of poverty in relative terms - the fact that some people lack those things which others in society take for granted. Including Cameron and his millionaire buddies all of whom are out of touch with reality about just how deprived and poor the majority of people are. So many elderly, unemployed and disabled have enormous difficulty just paying their heating bills, many live in cold damp homes, myself included. We are fortunate that this year it has been mild. I imagine that all of these over privileged MPs who are destroying the lives of those far less fortunate take it for granted every morning when they wake to a central heated home, among all the other privileges that most of them probably did not earn in any real sense of the word   Up Date I have some details about action we need to take concerning the lords debate on Tuesday 17th about the proposed changes to DLA to replace it with PIP, which will be a detriment for many reasons not the least of which is the reduction of successful applicants by twenty percent. Which means that many who now depend on DLA will not be eligible for PIP. DLA is an important benefit upon which disabled people depend and as many as twenty percent will be deprived of this vital resource if DLA is replaced by PIP (Personal Independence payment). The change will have a huge and negative impact on the sick and disabled. The Spartacus report has revealed that the views of Boris Johnson along with other individuals and groups who were consulted consider that replacing DLA with PIP would be a serious detriment for various reasons and would push people into poverty. Calls for a pause to PIP are growing and newspapers, politicians and charities are joining the call. We need to  call on the Government to pause PIP, reconsider the evidence and most of all, make sure that any assessment is NOT a repeat of the disastrous Work Capability Assessments which disabled people are having to fight in tribunals to maintain a much reduced benefit or are forced into work they are not well enough to do, the stress of which and has even resulted in hospitalisation and suicides. Right now I am exhausted and have yet another headache so must leave it there. Tomorrow if I am well enough I will post details of how you can help by writing to The Houses of Lords Peers if I cannot get on-line you will most likely find some information at the website below either tomorrow or the next day: http://diaryofabenefitscrounger.blogspot.com/ January 15th I have had to amend this entry because it was inaccurate. Apologies to anyone. Important Action to Take concerning The house of Lords DLA Debate on Tuesday As I wrote yesterday I have some details about action we need to take concerning the lords debate on Tuesday 17th about the proposed changes to DLA (disability allowance) to replace it with PIP( Personal Independence Payment) see the update in the previous entry. What we need to do is write to Crossbench Peers, who voted against the Government on the ESA amendments and let them know how much we appreciate it and how VITAL it is that they attend the debates on DLA on Tuesday, listen to the arguments and stay to vote. Please also ask them to call for a pause to PIP to call on the Government to pause PIP, reconsider the evidence and most of all, make sure that any assessment is NOT a repeat of the disastrous Work Capability Assessments.  Here is a list of peers who took part in the ESA debate  http://www.parliament.uk/business/publications/business-papers/lords/lords-divisions/ Explanation of content and no contents from the governments website Content is the name given to a 'yes' vote in divisions in the House of Lords and indicates a vote in agreement with the proposal being discussed. The Not Contents are those who have voted 'no' to the proposal. Members of the House of Lords show that they agree with a proposal by going into the Contents Lobby during a division and use the Not Contents Lobby to vote against a motion in the divisions. In the House of Commons they have Aye and No Lobbies. Source: parliament.uk/site-information/glossary/content-and-not-content-lobbies/ DLA is an vital benefit upon which disabled people depend. If DLA (disability living allowance) is replaced by PIP (Personal Independence Payment) as many as twenty percent will be deprived of this vital benefit resource.  This is the government's attempt to reduce the benefits bill, it has nothing to do with helping sick and disabled people. The reduction of the numbers of people who will qualify is only one of many detriments, the change will have a huge negative impact on the sick and disabled. The proposed changes will see hundreds of thousands of disabled people potentially lose benefits of up to £70 a week for care and mobility expenses. changes which could lead to financial hardship and social isolation for chronically ill and disabled people pushing an already disadvantaged group deeper into poverty. The Spartacus report has revealed that the vast majority of individuals and groups who were consulted, consider that replacing DLA with PIP would be a serious detriment for various reasons and would plunge people into poverty. Along those who opposed was conservative mayor of London  Boris Johnson. The report, also called the responsible reform report, shows overwhelming opposition to the coalition’s disability benefit reforms kept hidden by the government. Sue Marsh, a disabled blogger and activist who led the research, alongside Dr Sarah J Campbell, said: “While disabled people welcome reform of DLA where it will simplify the system and better support their needs, they do not want a new benefit. They believe it is a costly irrelevance during a time of austerity. “We urge members of the House of Lords – across party political boundaries – to take note of this research and the strength of opposition to the proposals. It is not too late for them to halt these deeply damaging reforms.” More information guardian.co.uk/uk/2012/jan/06/boris-johnson-attacks-disability-payments-cuts chronicle.gi/headlines_details.php?id=23623 Calls for a pause to PIP are growing and newspapers, politicians and lots of charities are joining the call. Please write to as many Peers as you can. Not all have e-mail so if you can write them a letter please do so. Though there is not a lot of time for a letter to arrive by Tuesday so it would need to be posted ASAP. When writing email please include the name and address of the person you are writing too at the top. Also include your address if you feel comfortable doing so, much the way you would do if writing a letter as this makes it look more authentic. Please do the best you can Also please do spread the word and blog and tweet, share and email explaining again, that PIP must be paused until concerns have been addressed, particularly over assessments. Finally read this encouraging e-mail from Sue Marsh one of the prominent campaigners: I discovered we have a @SpartacusTweets account I didn't even know about. And a Facebook page. And a forum. I found "battalions" of spartaci all over the web planning their own campaigns and creating brilliant, innovative ways to be heard. I read beautiful blogs about our campaign written by people I didn't even know. I saw support from celebrities, politicians, journalists, unions, charities, DPOs and disabled people everywhere I looked. I found coverage and supporters in America, Canada, Finland, France and New Zealand. But do you know what I didn't find? In a week where we finally got coverage in The Daily Mail, the Telegraph and Newsnight? I didn't find a scrounger. That was the great triumph of this week. Finally, after all the months and months of patient reminders, people thought about disability. They questioned the wisdom of sending terminally ill people to the jobcentre. They rejected the idea that illness or disability magically disappear in a year. They were amazed to find cancer patients were expected to look for work on chemo and that disabled children were to become chattels dependent on goodwill, no longer entitled to independent means. We always knew they would. We always knew that if anyone cared to tell them, the public would be horrified. Continue reading diaryofabenefitscrounger.blogspot.com/ Will have to leave it there I hope the above is accurate and clear enough. I am feeling really ill and know that I should not be doing this, it is 6.56 and I am exhausted already with yet another headache. I have been up since four, I rarely sleep past this time. I guess there are advantages to insomnia . I have written e-mails to five peers and two letters I hope to do more, but it is difficult because of my anxieties not to mention the headaches which make everything so difficult and really slow me down. Thanks to any who have visited this website and have helped in this endeavour January 16th With reference to the above entry January 15th concerning writing to crossbenchers who voted against the Government on the ESA amendments to let them know how much we appreciate it and how VITAL it is that they attend the debates on DLA on Tuesday and vote against the proposal to replace DLA with PIP. Please refer to the above entry if you have not already seen it In addition if you have time perhaps you could write to as many cross benchers as you this list as you can manage: http://www.google.com/maps/ms?msid=204639635371731701782.0004ada20165bf2c184ef&msa=0&ll=54.610255,-2.680664&spn=9.999969,28.54248 But if you only have time for the crossbenchers -contact information in  January 15th entry - who voted against the ESA please concentrate on them first. If you have any doubts that this is anything other than a deserving cause please read these moving stories this: http://diaryofabenefitscrounger.blogspot.com/2012/01/start-of-my-campaigning-nowhere-to-turn.html Important Update Today is the launch #spartacusstories  Today I am not coping at all so it is best that I post today's actions by cutting and pasting the content of an e-mail I received concerning the launch of #spartacusstories  With the key DLA votes taking place on Tuesday, and the sudden positive media focus, the idea is to get as many stories out there as possible. Stories have always been our most powerful tools - personalising a situation the Government are SO keen to keep impersonal is very effective. We've set up a very basic blog to post them to and will be posting many stories from the earlier One Month Before Heartbreak campaign all through the day. http://spartacus-stories.blogspot.com/  The more sites that post a story on their own pages too, the more chance we have of them being heard. Please send links to whatever you write too and we'll cross post them. Also tweet your links using #spartacusstories They don't have to be long. Write whatever you want, however you want. Please don't worry that you aren't articulate enough, or about spelling or style - sometimes the simplest posts are the best. Something along the lines of "I lost my DLA and..... or "If I lose my DLA..... "I use my DLA to...... "My illness makes me feel.... etc Twitter is good too - sometimes 140 characters are even more poignant eg. "DLA is everything to me, without it I'd go hungry #spartacusstories" etc In all of your posts or tweets and emails, don't forget to call for a pause to PIP. I have some enormously exciting news, but I simply can't share it yet. (Would be bad form, lol) The key thing is to prepare the ground before the votes on Tuesday as we will have very little time to raise awareness. I believe there will be a focus in the Lords on not making the same mistakes with DLA as were made with ESA in particular the assessments. If you have any WCA stories to post, they're fine too, remember to say "We cannot make the same mistake with DLA as we made with ESA please pause the reform of PIP" or something similar. This is another co-ordinated effort with charities, individuals, politicians and friendly journos all issuing press releases, tweets and web articles together. Let's say 10am again but don't worry - it's short notice - stories can roll in all day and even Tuesday. If you have a story to tell about your own illness or disability we would be very grateful. It's hard to speak out, especially if people don't know and see you as invincible, but too often disability is hidden away and tomorrow is about showing that we are many. Good luck again spartaci! Remember, "Alone we whisper, together we shout."   Please take what action you can. I have been writing to peers this morning and am stressed and weary but we have to keep trying, and remember every action however small will help. I know how difficult it is for people with mental health problems and the torment of OCD can make it rather a nightmare as I know only too well as I have great difficulty writing, so for me is a huge endeavour. Just please do what you can Up Date 10.55 More information about today's action from Diary of a Benefit Scrounger http://diaryofabenefitscrounger.blogspot.com/2012/01/spartacus-stories.html Spartacus Stories   This week, the focus in the Lords will shift to Disability Living Allowance (DLA) and Government plans to scrap it entirely and replace it with Personal Independence Payments (PIP). It is this proposal that prompted us to produce the Spartacus Report or Responsible Reform. Sick and disabled people, their charities and organisations do not support the plans, which are based on an ignorance of disability, flawed evidence and will do great harm to millions. The Government are steamrollering the changes through despite growing calls for PIP to be put on hold until the plans can be made safe. We do not oppose reform of DLA - sick and disabled people want the benefit to be simpler and better targeted. We DO oppose plans that will fail causing millions to suffer. We call on the House of Lords to attend the debates tomorrow and vote for a pause.  This morning, we see desperate attempts at propaganda from the DWP. Once more, we must ignore it, however painful it is. We must ignore the fear that these attacks inspire and make our own case honestly, calmly and clearly. Once more, we must present the British public with evidence and trust that they will not accept this attack on the most vulnerable of all. All day, we will be posting stories here http://spartacus-stories.blogspot.com/ They will tell people what DLA is really used for and how it helps us to live as independently as we are able to. All over the internet, people will tell their side of the story and the blog will be updated all day. Please use the hashtag #spartacusstories to tell your own story on twitter or to post links to your own experiences. Update your statuses on Facebook, calling for a pause to PIP and asking peers to attend the debate tomorrow. Blog, send the links to your local paper, ask friends and family to join in. We must report our own news, we must be our own advocates. It is becoming clearer every hour that the Government have no understanding of their own policies. Their arguments are unravelling by the day and no amount of lies or spin will hide us away. If the best argument the Government can make is "we can't afford it" or "you don't deserve it" then we must just trust the public - and the Lords - to decide for themselves who to listen to. We must hope that they ask who they believe - corrupt, out of touch, ignorant, politicians or the very people they hope to silence and ignore.  I am confident they will hear our stories and reject the arguments of MPs who receive more in food expenses than we must live on for a month.  #spartacusstories is our chance to be heard.    January 17th URGENT! Action Posted 12.17 By the time most of you read this it will probably be too late. But if there is time for you to take action please do so. I received the e-mail below concerning today's debate in the house of Lords about the DLA reforms: I paste the e-mail straight into this blog as there is not time to do any thing else This post explains what's happening today.    We have an amendment in the Lords and must do anything we possibly can to get peers to know.    Please, read the post, share it, use it, copy it wherever you like. We've got 7 hours!!! GO SPARTACI GO!!!!   http://diaryofabenefitscrounger.blogspot.com/2012/01/clause-80-amendment-50e.html Please read the above Blog entry, CLAUSE 80 - AMENDMENT 50E, from Diary of a Benefit Scrounger before continuing. I estimate that we have about two or three hours left from 12.30 when I posted this blog entry. Please just do your best. It took me about half hour including a lot of obsessing. Not sure why we did not get notification earlier though I was out shopping and did not get my e-mail until about midday. There are a couple of form letters included to give this information to peers amongst the replies at the end of the above blog entry for you to use if you cannot compose your own, just scroll down. I used a combination of the two. Also a list of peers e-mail address for mass mailing which I include here but is also in the replies LIST OF CROSSBENCH PEERS - EMAILS Sending as a mass email - just put one name in the "To" bar of the address bar and then copy and paste the rest into the "BCC" bar. (Not cc bar) No time to do them all individually - it is happening in a few hours!! andrew@amawsonpartnerships.com, alastair@aberdares.co.uk, adebowalev@parliament.uk, afsharh@parliament.uk, michael.allenby@btinternet.com, altond@parliament.uk, amosv@parliament.uk, armstrongr@parliament.uk, best@parliament.uk, p.bew@qub.ac.uk, abhatia@casley.co.uk, bilimoria@parliament.uk, birtj@parliament.uk, BOOTHROYD@parliament.uk, brabazoni@parliament.uk, bramallen@parliament.uk, lady.briggs@googlemail.com, butlerslosse@parliament.uk, campbelljs@parliament.uk, carswellr@parliament.uk, deechr@parliament.uk, dafydd.elis-thomas@wales.gov.uk, errollm@parliament.uk, finlayi@parliament.uk, freybergv@parliament.uk, fritchiei@parliament.uk, greenfieldsu@parliament.uk, greengrosss@parliament.uk, greenwaya@parliament.uk, greythompsont@parliament.uk, crlguthrie@gmail.com, halla@parliament.uk, harriesr@parliament.uk, hastingsm@parliament.uk, haymanh@parliament.uk, hennessyp@parliament.uk, hoffmannl@parliament.uk, HoggS@parliament.uk, HOPEJAD@parliament.uk, howarthv@parliament.uk, howee@parliament.uk, hyltonr@parliament.uk, ingep@parliament.uk, janvrinr@parliament.uk, jaymh@parliament.uk, listowelf@parliament.uk, LLOYDAJ@parliament.uk, kakkara@parliament.uk, lowc@parliament.uk, LUCER@parliament.uk, lord.mackay@scotcourts.gov.uk, mancej@parliament.uk, McFarlanej@parliament.uk, marm@parliament.uk, martinm@parliament.uk, mawsona@parliament.uk, meachermc@parliament.uk, mckeem@parliament.uk, murphyel@parliament.uk, neubergerj@parliament.uk, nichollsd@parliament.uk, northbournec@parliament.uk, oloann@parliament.uk, oneillm@parliament.uk, ouseleyh@parliament.uk, oxburghe@parliament.uk, palmerad@parliament.uk, patel_naren@hotmail.com, pattenc@parliament.uk, prasharu@parliament.uk, ramsbothamd@parliament.uk, richardsonk@parliament.uk, rookerj@parliament.uk, roperj@parliament.uk, ROSSLYN@parliament.uk, SaltounF@parliament.uk, sandwichj@parliament.uk, skidelskyr@parliament.uk, dalrymplej@parliament.uk, SternVH@parliament.uk, dennis@hdstevenson.co.uk, stirrupg@parliament.uk, sutherlands@parliament.uk, tanlaws@parliament.uk, taylorjdb@parliament.uk, tombsf@parliament.uk, walkermjd@parliament.uk, walpolerh@parliament.uk, warnockh@parliament.uk, watsonm@parliament.uk, Hope the above is correct , this was a rushed entry. Please read the following Guardian article about this debate:  Welfare reform bill: disability benefit cuts - Lords live discussion http://www.guardian.co.uk/society/blog/2012/jan/17/disability-welfare Posted earlier: 9.30 AM I got in a real muddle with Sunday's entry concerning the explanation of Contents and No contents, though in the end I did write to the correct people. My son alerted me to the confusion, though I think it was evident who we should be writing too as obviously the section which contained the results of mostly conservative votes was not correct. But making such a mistake has really made me anxious though I imagine no harm was done. Frankly I doubt many who visit here would cope with writing to them all as it is so confusing and I had a struggle, but managed to write a few e-mails. And this is the point that every action is of benefit however small. There are some reports of interesting developments on the Diary of a Benefit scrounger including a response from Lord Freud Minister of Welfare Reform to the Responsible Reform Report (Spartacus Report) Lord Freud's Letter to Peers re Spartacus Report and our Response Today, Lord Freud has written to peers with a response to the Responsible Reform (Spartacus) report. This is the full letter, and our response to his claims : 16th January 2012 Dear Colleague. I understand that you may have received a report recently entitled 'Responsible Reform' by Dr S J Campbell and other disability representatives. I believe this report grossly misrepresents the way the DWP has been conducting disability reform thus far, and I would like to briefly explain how the report's criticisms are misplaced and misleading. The reform of DLA is long overdue, and I am determined to improve the system of state support for disabled people and have made it a personal priority that this is achieved in an open, consultative manner. I think we all agree that the reform of DLA is overdue, we just disagree that PIP is the right reform Responsible Reform suggests that the consultation period, following the publication of the 'Disability Living Allowance reform' consultation document, was insufficient. The Government's Code of Practice on Consultation recommends a minimum 12-week consultation period for public consultations, unless there are good reasons for a limited consultation period. The formal public consultation on DLA reform ran from 6 December 2010 and closed on 18 February 2011. While we fully aspire to the code's recommendations, we felt a 10 week period was adequate, given that the consultation was limited to general principles only, was preceded by extensive engagement with a wide range of stakeholders and disabled people and will be followed by further extensive consultation on the detailed proposals. The consultation asked specific questions that would affect the lives of disabled people, it was not "limited to general principles only." This letter does not explain in any way why the consultation period was shorter than recommended under the Code of Practise on Consultation. If anything, respondents felt the period should have been longer than 12 weeks as a "reasonable adjustment" to those disabled people who needed extra help or support to participate. As outlined in the 'Disability Living Allowance Reform' public consultation document, the Welfare Reform Bill sets out the high-level legal framework of powers underpinning the new benefit. The detailed requirements will be set out in secondary legislation. I am committed to further consult on how we use these powers, and it is my intention to consult fully on the secondary legislation where the rules for Personal Independence Payment will be different to those currently applying to Disability Living Allowance. This consultation will build on the earlier one. Continue Reading: diaryofabenefitscrounger.blogspot.com/2012/01/lord-freuds-letter-to-peers-re.html#comment-form I feel quite lost for words sometimes when I hear the continual rhetoric that these reforms  are  for the sake of disabled people. Nowhere is there a response in the letter as to why they will reduce 20 % from the DLA budget and the devastating impact it will have. Or just how this reduction helps disabled people. Which of course it does not and no amount of slick smooth words can possibly convince anyone that it does, so Freud decided not to respond to this. Please read the entire letter and response. Also check out further developments diaryofabenefitscrounger.blogspot.com/ I think it is best from now on that I alert you to actions and information rather than attempt to rephrase such or try and clarify things about which I am uncertain as after the mistakes of Sunday I am even more anxious about making errors. As a sufferer of OCD, doubt of course is a huge part of my personality and I obsess over the possibility of inaccuracy and having made a mistake I am even more anxious. I was yesterday thinking of simply not getting involved, at least by blogging here. But today I consider that if I alert you to information and actions with links and a sample as I have done above this will suffice, along with a little personal comment if feel the need. Please click the links to continue reading as advised, all links will open into a new window so you will still be able to get back to this website. I know even now after fourteen years on the internet I can makes mistakes with the back buttons or it does not work and you loose the original website. Again I apologise for this issue monopolising my blog but at least I am now back to writing more regularly and when things have settled down I hope to include items about other issues Please try and take part in some of the campaigns suggested in the Dairy of a Benefit Scrounger. January 18th I am sad to report that we lost the DLA debate, CLAUSE 80 - AMENDMENT 50E, yesterday in the house of Lords. Though sad is rather a bland word for the way I feel. Depressed, angry ,disappointed, overwhelmed, trying not to cry. If I cry I will most likely get a headache and though I had an awful headache during the night this morning it is only just a niggle. After last week’s success over the ESA one year limit and other issues I thought that finally there is some decency in the world that good can triumph over evil. We only lost by 16 votes so yes there were some good people on our side. But when you suffer with chronic illness and depression you see only the black side. However there is a positive side as nothing so they tell me is either black or white: The Government had to make very considerable compromises to avoid another embarrassing defeat. For a more positive slant please read: A PR win for the Government but an Actual Win for Disabled People  diaryofabenefitscrounger.blogspot.com/2012/01/pr-win-for-government-but-actual-win.html I have been up as usual from 4.30 writing what appears below which is a more negative take, one which I made before reading the more positive and inspiring perspective from Sue Marsh's Dairy of a benefit scrounger: If you take the News at face value there does indeed appear for anyone who is dependent on DLA that there is a very black side. Whether such is mitigated by the governments concessions, which they seemingly proposed in order not to be once again defeated,  remains to be seen - click the above link to read about these concessions if you have not already done so. For example according to BBC news 20000 blind people will loose DLA. Also ccording to Baroness Grey Thompson who supported the amendment about half a million people will not receive any help: "There is huge concern about the effect of DLA reform. The thresholds for the new benefit were only announced yesterday [Monday]. The modelling suggests that the second draft would produce a 2015-16 caseload of 1.7 million people receiving PIP. Without introducing a new benefit, we would expect the number of 16-64-year-olds claiming DLA in 2015-16 to be 2.2 million. That is a reduction of half a million people who will not receive any help with the cost of disability who would have been receiving DLA. One of the groups which will be effected are those suffering with mental illness "So why an independent review and trial period? Some early analysis has suggested that one of the groups who may lose out would be those with mental health conditions who currently receive the lower rate of mobility. Many people with a mental health condition find it impossible to use public transport. They frequently use their DLA to pay for taxis. If they are unable to get out it is likely to make them more socially excluded and push them further from the job market. This is just one possible unintended consequence. there needs to be careful scrutiny of who will be affected by these changes Baroness Grey Thompson quoted in the Guardian, link further down. Concerning the effects of people with autism Lady Browning who stood down from William Hague's frontbench team in 1998 to care for her autistic son, said:  "Because the spectrum, particularly on the more able end, includes people who may be very articulate, on a good day it may be quite difficult to actually see that this is a communication disorder. On the other hand, you could have an assessment where, with the benefit of somebody in support in the same room, the person on the autistic spectrum may actually have some difficulty answering any question themselves as they struggle to put the words together or to make contact with the person or to answer the questions. It is not only the loss of income and consequent misery such will bring to already difficult lives, it is also that awful feeling that there are people who govern that are morally corrupt, lack compassion, empathy, sympathy, and plain human decency and a conscience. Shocking isn't it there is money for the Olympic games and no doubt the forth coming Queens jubilee but no money for the disabled the sick and the destitute. If you have not already heard about this sad state of affairs please read the following: Welfare reform bill delay blocked as coalition wins vote against amendment House of Lords rejects Lady Grey-Thompson's proposal for pilot scheme before disability allowance cuts are introduced The government fought off a fresh challenge to its controversial welfare reform bill on Tuesday night, when peers rejected a proposal to delay the full introduction of slashed new disability payments after ministers offered concessions. As the cabinet hardened its tactics by agreeing to overturn a series of defeats in the House of Lords last week, a cross-party group of peers failed to introduce a pilot scheme before a new regime for disability allowances can be fully introduced. Peers voted by 229 to 213, a government majority of 16, to reject an amendment tabled by Lady Grey-Thompson, one of Britain's most successful disabled athletes, after the government warned her plan would cost £1.4bn. The government is planning to replace the working age disability living allowance (DLA) with a new personal independent payment (PIP) which will involve a more rigorous assessment system. The government aims to cut costs by 20%. Continue reading this very informative article guardian.co.uk/society/2012/jan/17/welfare-reform-bill-amendment-blocked?newsfeed=true And amazingly in the Daily Mail, the newspaper that once labelled the sick and disabled as scroungers: Welfare Reform Bill: Where is our national conscience? Over the past week, as the hunting season of the disabled has continued, I have had moments when I have been forced to ask, of no-one in particular, ‘what is wrong with us?’ And I have questioned that in response to the way our country - and our elected and unelected leaders - have approached and dealt with the issue of welfare reform and, more pertinently, the budget for our sick and disabled. Personally, I have loathed David Cameron’s Welfare Reform Bill from the beginning. Not just because I view him as a hopelessly out-of-depth and and incapable Prime Minister, which I do, but because it is the singularly most reprehensible attack on our vulnerable - our disabled - that this country has witnessed in many years. Read more of this very passionate article written prior to the House of Lords debate: dailymail.co.uk/debate/article-2087784/Welfare-Reform-Bill-Where-national-conscience.html#ixzz1jn5K4uH9 As you will have read, apparently Freud warned of the high costs of the Grey-Thompson scheme. He said: "If we do it that way, it would push back the implementation of the benefit. Our estimate is that the loss is £1.4bn of savings over the reassessment window. A measly £1.4bn, compare it to the cost of the Olympic games: Security costs are alone are around 1 bn from a total budget of 9,3bn Can't find any precise estimate of the cost of the Queen's Diamond Jubilee but it must run in to millions, such events always do. A total waste of money supporting an out dated anachronism when many people live in poverty, deprivation and destitution unable to heat their homes or have enough to eat or have any quality of life. It is a disgrace and an outrage when thousands of people will loose their benefits such DLA, vital life lines to having a place in society, being a part of society and simply to have enough money for the basic things that so many take for granted.  I am sure Cameron and his evil cronies will never have to worry about how they will house or feed their children or whether they dare turn on their heating. Shame on the morally corrupt government.  Shame on the greedy bankers. Shame on all those who are greedy, exploitative, manipulative, those who enslave people with low wages and soaring prices, who destroy the environment along with the other animal with whom we share this world all in the name of profit and power. Shame on those who live in comfort while others suffer. Thank you to Sue and  Kaliya and everyone who was involved. We have lost the battle but we must not lose the war. We must believe that good will triumph over evil, right over wrong, justice over injustice. Here I quote Sonia Poulton's final paragraph in the Daily Mail article mentioned above: I am now going to ask something completely irregular for a journalist. And it is this: can we please search our collective conscience and let our local MP’s know, in no uncertain terms, that we do not support this act of treacherous brutality against some of our most vulnerable citizens and that we demand, once and for all, that the ‘well’ be put back into welfare. For all our sakes. Write to all MPs state our case, appeal to their consciences - if they have one. And of course many do but may need reminding of what is right, what is fair and just. It is important to remember its not all doom and gloom our achievements are considerable Please read this positive assessment From the Diary of a benefit Scrounger if you have not already done so: A PR win for the Government but an Actual Win for Disabled People   This will be a long post, but there's a lot to say! Firstly, go back to 5th Januuary. We had no hope. ESA was going to be limited to just one year, DLA was to be abolished and replaced with PIP, which we felt were unfit for purpose and designed without the genuine input of disabled people and their groups. We had no media, no polticians, no voice. On the 6th January, the Boris Johnson story broke (due to our press release) and everything changed. Suddenly, the Mail and the Telegraph and the Mirror were reporting the first hint that all may not be well with the Government's plans for PIP. The story built over the weekend and then, in a blaze of glory and an unprecedented social media campaign, we launched Responsible Reform (The Spartacus Report) Kaliya and Sarah and I and all the others involved in writing and producing the report could never in a million years have known how successful it would be. A welfare report? Trending on twitter? Getting millions of reads and crashing servers? Miraculous. All the while we were preparing Responsible Reform we thought it would be ignored. We did it to go on record, to be heard. We did it to ensure there would be a lasting account of the very grave concerns disabled people have about the plans.  Did we think charities, celebrities, academics and medics would support our work so resolutely? Did we think the media would start to push ministers on their plans for reform? And most unlikely, did we think we would end up with an amendment under debate in the House of Lords, requested by us and defended by disabled peers in the House? Never in a million years. But we hoped. We always knew that the more momentum we could build - and remember this was just momentum created by ordinary people - the more pressure the government would face. We could never, ever have known they would face this much pressure and be forced to move so far. At the 11th hour - oh but what a shame it couldn't have been earlier - the entire disabled community came together with one voice and that, was too much for even the coalition to ignore. It is crucial to understand the process of yesterday. Amendments are not binding and as ministers have assured us, will be overturned when the welfare reform bill returns to the House of Commons. They are embarrassing PR blows, little more. What IS binding are the speeches Lord Freud makes just before a vote. It is in that moment that peers get to judge just how far the Government are willing to compromise. If it is far enough, the vote will either be withdrawn or will fail.  As I tweeted just before the vote "LISTEN VERY CAREFULLY TO FREUD'S RESPONSE" As Freud started to speak it was clear that his language was carefully scripted and for once, contained detailed commitments to compromise. At this point, I start to realise that he is moving significantly - I wonder if it will be enough to convince peers. Here are my tweets as Freud is laying out his compromise : "He's promising stuff, but will Lords believe him??? #wrb#spartacusreport   "He's actually giving us almost everything to avoid a vote!!!!! #wrb#spartacusreport. Remember this bit is legally binding    "WAIT EVERYONE!!! HE IS GIVING UP TO AVOID A VOTE.#spartacusreport #wrb   "Remember!! He is saying all of this very carefully under oath. #wrb#spartacusreport   So how accurate is that? What did we ask for and what did Freud promise?    Here is amendment 50E, Clause 80,  Clause 80 BARONESS GREY-THOMPSON BARONESS WILKINS LORD LOW OF DALSTON BARONESS CAMPBELL OF SURBITON 50E* Page 58, line 26, at end insert— “( ) The Secretary of State must lay before Parliament an independent review of the plans for implementation of the assessments under section 79 before the provisions are brought into effect, and such plans must in particular provide for— (a) a trial period before any assessment process is implemented fully for new applicants and those transferring from DLA; (b) disabled persons organisations to be involved in formulating the assessment process.”   Effectively, we got some of all of those things, without an official pause. In fact, we got more. Here are the key points Freud conceded and what they mean.    - A formal consultation on assessments to run for 15 weeks and the key point "regulations which we will lay later this year, will be subject to the full affirmative procedure of both houses."   This is crucial. It means that all the details still missing on assessments, weightings and entitlement criteria will have to be agreed by both the Commons and the Lords before they can go ahead. This is what we most needed and is a huge concession. It means the Government cannot sneak unfit plans through without the agreement of parliament. I can't stress enough what a win this was and how resistant ministers had previously been to the demand.    -Freud went to to promise to test the assessments first, emphasising that "if for any reason [testing is] insufficient we will carry out further testing   -In response to Baroness Browning, Freud promised to "personally look at the impact" PIP would have.   -The Implementation Development group allows disabled people a say in design and implementation. Freud promised not to scrap it in 2013 but to carry it forward. He pledged that "There have been, and there remain, significant opportunities for involvement from disabled people and their organisations, and significant opportunities to influence our proposals to ensure we get them right."   - He promised to test all systems in a "model office environment" before they go live. This means the systems must work before they are used on real people.    - He promised that anyone taking on the contract for assessments must do the same and confirmed that "We expect them to work with disabled people on the design of their processes to improve customer experience before during and after implementation."   Freud goes on to lay out how they will delay the implementation and in effect, trial PIP in a small way, rolling it out very gradually with checks and reviews at every stage. This is very significant and a million miles from a total rollout in April 2013.    He says "As well as getting the whole development process right, I recognise the value in moving away from a big-bang approach to implementation which would see both new claims and reassessments beginning in April 2013" The next section lays out exactly how the implementation of PIP will now work.  "We will limit the number of new claims for personal independence payment to a few thousand per month for the first few months of implementation. This will allow us fully to trial all the processes in a truly live environment. Once we are satisfied that the new processes are working as intended with this reduced number, we will allow all new claims for personal independence payment to enter into the process. We will continue monitoring and reviewing the processes to ensure they are working effectively and appropriately and to see how claimants are finding the experience. We will begin to reassess existing DLA claimants in a co-ordinated way six months after the initial implementation. Again, we will stagger this process. We expect the first stage of reassessment to start in the autumn of 2013, beginning with individuals on a DLA fixed award who will need to renew their claim and those claimants who report a change of circumstances on their existing DLA claims. At the same time, we intend to conduct a pathfinder trial reassessing individuals who would not, in the ordinary course of events, come up for reassessment. We expect the pathfinder to run for around three months to ensure the processes for identifying and contacting people and taking them through the claim processes are working satisfactorily. Allowing a small number of existing DLA claimants to advance through the reassessment process ahead of full national implementation will enable us to be sure that our approach to engaging these customers into the claims process is working effectively ahead of widening the selection. Also very relevant here is the independent review and report on the assessment that we are legislating for in Clause 87."   -So basically, PIP will be trialled, on a small number of new claimants. Then all new claims, with a commitment to review at every stage. Only if everything is working will existing claims begin the process and that, 6 months later.    -He went on to promise two independent reviews, at 2 years and 4 years with a third promised if any concerns are expressed at year 4. He stressed that this is a "Firm commitment from me and my ministerial colleagues"   He concludes by saying  "In reality, in the way that we are structuring this, we are trialling it in any real sense; we are doing it on a gradual basis. If we do it in this way, we will get the assessment and wider benefit processes right; we will involve disabled people and we will learn from the earlier delivery of the benefit."   So, what does all that mean? It means the Government had to make very considerable compromises to avoid another embarrassing defeat. Are they significant enough for us? Of course not. Would they ever have been? Of course not. Were we ever going to stop PIP 12 days before the vote? Never. Do we trust this government to listen properly this time? Why would we?    But, Freud and ministers are accountable for every promise they made. If they renege on even one, we can challenge it.    Crucially we were heard, not just by nervous ministers, but by the public. There is now real disquiet over plans to cut DLA for 500,000 disabled people. The atrocious arrogance we have seen for so long from politicians, simply must be tempered from now on. We shone a spotlight on these reforms and now they must be implemented in full view.    Does it matter that they "won" the vote or does it matter that we made PIP safer for millions? That any details or changes must be agreed by the Commons and the Lords? Did we want the PR coup or did we want concessions?    I wanted concessions, any concessions, but I never thought we would get them.    Peers got hundreds of letters and emails. The pressure you put on Government was truly extraordinary and make no mistake, this is a Government unwilling to shift on even the smallest details. I have never seen ordinary people - not politicians or think tanks - ordinary people, affect actual democratic change in the way I saw last night. Never.    And the peers - what of them? Well, just days before a vote, they heard our requests, tabled an amendment and fought. For us. It was a stronger amendment than any before it. It focused on us, on disabled people and what we needed to start to trust any process affecting us. They fought passionately for an amendment it would be very hard to win. That in itself is significant in a world of political positioning.    Perhaps one of the most significant statements came from Lord MacKenzie, Labour Lord "I have some responsibility for having introduced the employment and support allowance so I cannot claim any such accolade. It is clear that the assessment process has not been working and has caused... distress to too many disabled people"   As an unexpected bonus, Labour finally taking ownership for the failures of ESA is a step forward.    Finally, how did the vote go?  Not Contents 229 - Tories 150, LibDems 65, crossbench 13, Other 1 Contents 213 - Labour 160, LibDems 2, crossbench 39, other 12  There is no easy way to say that those figures are brutal. We won the crossbenchers by 3 to 1. We won the argument. On evidence, politically impartial peers voted for a pause to PIP. Lib Dems did not. (With the notable exception of Bns Tonge and ......TBC....... ) Even the Tories did not turn out in numbers to match Labour. But the LibDems were whipped - told how to vote - so we could never have won. Did they make Freud shift so far in exchange for a win that would save the Government embarrassment? It doesn't really matter. They signed away the Disability Living Allowance. I hope they sleep well.    When I took on the Spartacus Report, I hoped that in some small way it might put pressure on the Government. That somehow, it might make people think. I never in a million years thought it would result in real changes to the plans for PIP. It did, and every last one of us should sit back in amazement and really take in what we did. We embarrassed the Government. We embarrassed them so much, they would certainly have lost yesterday if they hadn't moved significantly. We won three amendments to ESA. We changed the structure and implementation of PIP. We had just seven hours to publicise an amendment and ask peers to vote on it. With ESA we had 15 months. Nonetheless, the Government still only won by the narrowest of margins, a mere 16 votes.    Did you ever - ever - think we would do any of that?  diaryofabenefitscrounger.blogspot.com/2012/01/pr-win-for-government-but-actual-win.html Do check out this entry at its source and read the comments: To Sum up I usually concentrate most of my on-line activism to animals rights and today I wonder what hope is there for animal rights when in a country like the UK even humans do not have rights. My father fought in World war two to defend this country against the evils of Nazi Germany. Yes he volunteered. I wonder what he and all those who gave their lives would think of today's government who slander, abuse, neglect and even use Nazi propaganda tactics, see November 14th entry, to discredit sick and disabled people. The government's behaviour concerning benefit reforms which will plunge many people and families, including children, into poverty surely goes against The Universal Declaration of human rights which Britain signed Article 25. •(1) Everyone has the right to a standard of living adequate for the health and well-being of himself and of his family, including food, clothing, housing and medical care and necessary social services, and the right to security in the event of unemployment, sickness, disability, widowhood, old age or other lack of livelihood in circumstances beyond his control. •(2) Motherhood and childhood are entitled to special care and assistance. All children, whether born in or out of wedlock, shall enjoy the same social protection. http://www.un.org/en/documents/udhr/index.shtml I now have an awful headache which I know is going to get steadily much worse so for now I will leave it there. Note while researching the cost of the Olympic games I came across this very worrying piece of information which flashed on the screen: Imagine a World Without Free Knowledge For over a decade, we have spent millions of hours building the largest encyclopedia in human history. Right now, the U.S. Congress is considering legislation that could fatally damage the free and open Internet. For 24 hours, to raise awareness, we are blacking out Wikipedia. Learn more. Please do click the link and read the information. This is a very serious and detrimental development, the internet needs to be free and uncensored if we are to do the things that we have done recently concerning this campaign. Without the internet we could not have achieved what we did without uncensored social networking. Pleaseeeee do not think the UK  government are any different than any other, I can quite well imagine that had they had the means of censorship they would have put a stop the Spartacus report and indeed the entire campaign. January 19th Perhaps it is time for a change of subject, at least for today.  Though I will continue to include updates and any further action that needs to be taken concerning welfare reform. One of the subjects of this website is creativity, though I have had no input from any one for a long time. Creativity I think is essential for everyone particularly during difficult times in our lives. I endeavour as much as possible to set some time aside each day to do something creative, even if it is only to draw a Zentangles. I say, only not to imply that Zentangles are some kind of second rate art form, they are not. If you look at Zentangles they can be very creative and artistic; though they are meant to be spontaneous I doubt that few of those who practice this meditative art form cannot resist a little planning and manipulation. Zentangles are recommend for relaxation though they can be very additive. Someone I came across on-line admits to having to rest her arm and wrist for a few days as a result of strain by too prolonged and enthusiastic zentangling. Nonetheless they are a good distraction and something that can be done any time and anywhere Here is one of my very latest just upload to flickr this morning Click the link below to see a largerer size and more of my zentangles, photos and paintings. flickr.com/photos/37177488@N06/6729690983/in/photostream Yes I do obsess about them and am never satisfied and tend to make comparisons with others, which is not a good idea. I am still relatively a newcomer to this and like everything else it all takes time. January 20th "The moral test of government is how it treats those who are in the dawn of life . . . the children; those who are in the twilight of life . . . the elderly; and those who are in the shadow of life . . . the sick . . . the needy . . . and the disabled." Hubert Humphrey   Concerning the Welfare reform struggle, which of course continues, I would like to say how disgusted I am with the government for bringing about this dreadful blight into the lives of all those who struggle with disability and sickness and indeed unemployment. A category of benefit recipitants who often get over looked but who have to struggle on as little, in same cases as about £67 per week through no fault of their own. I have a lot to say on this issue and I am in the throes of writing a longer piece, but today I am just getting over a nasty headache which this morning was so bad I thought that it was migraine. Today I was sorry to learn that Sue Marsh, one of the prominent bloggers involved with the Spartacus report has been taken into hospital as a result of a deterioration of her medical condition, no doubt due to the enormous endeavour she and others have undertaken to oppose the government's unjust benefit reforms. In her blog The Diary of a Benefit Scrounger sue says: So How Am I? "Well I can confirm categorically that Arbeit does not macht you frei. Quite the opposite in fact. Far from "freeing" me, work has put me in a hospital bed chained with plastic tubes. I'm almost certain none of the politicians so glibly deciding our futures know what the "spoon bank" is. If you have a long term condition, then you only have so much energy for any given day. When it's gone it's gone - WIGIG. Now that doesn't mean you can't borrow energy, but just like the deficit, it has to be paid back. When you borrow energy (or "spoons) you are paid in adrenaline. The adrenaline convinces your body that all is well. OK, you're a little too shrill, a little too twitchy, you're eyes a little too bright, but I'm sure Mr Grayling wouldn't have noticed any of that as he sat talking to the composed little scrap with her make up just so. After a while, your natural instincts try to step in. "Go to bed" - the thought unbidden takes you by surprise. "Just close your eyes" - the siren call of rest as the adrenaline ebbs for a moment. In my case, I pay in immunity. As the weeks went on, I got a cough here, a splitting headache there so piercing it made me cry. I got neuralgia, sinusitis, the cough turned into a chest infection, I got spots in front of my eyes, atrial fibrillation. Little immune complaints popping up all over in protest at my unsustainable spoon debt. And then I stopped. When you stop, the adrenaline ebbs away. For a day or so you feel sad, but you're not quite sure why. Then you get sick. Really, really sick. the adrenaline blanket that had been keeping all those "niggles" that you ignored through gritted teeth at bay, is stripped away. My chest infection turned into something worse, my temperature started spiking, my face puffed up like a football, My ribs started screaming in pain. And here I am. In a side room on an acute medical ward. So infected, such a blob of immune horridness that I am not safe to be around other humans. I must be screened for scary things, because scary things happen when you are "immuno-compromised". This is not the face you all saw all week eh? I'm not the only one. We have at least two other spartaci that I know of in hospital - one in intensive care. Another collapsed two days ago after spending a week, non stop, sitting at his computer, building us a spreadsheet with one painful hand. Kaliya hasn't been able to speak for over 3 months as her oesophagus has collapsed on itself. Read the complete entry and everyone's comments and if you feel like it leave a comment of your own: diaryofabenefitscrounger.blogspot.com/2012/01/so-how-am-i.html I wish Sue and  Kaliya and the unnamed  "spartaci " who are in hospital a speedy and complete recovery. If it were not for Sue, Kaliya and others who worked intensively on this endeavour, and all those who participated in any ways large and small, nothing much would have changed for the sick disabled community. It is sad that this work and research had to be left to sick and disabled people themselves. Where were the charities that are supposed to care for and ensure the rights of people with chronic conditions and  disabilities. I am shocked and disgusted that many disabled charities did very little of any real significance despite the fact that they are willing to collect subscriptions to do so. Surely these charities should have been in the  forefront of any campaign to challenge the government's unjust, inhumane and immoral reforms which will make the lives of many sick and disabled people an utter misery, plunging many into poverty, fear and insecurity. If you do not know what Sue and others did please read the previous entries above Or go to : diaryofabenefitscrounger.blogspot.com/ The fact that this situation is serious is reflected in the anxiety of patients who visit their mental health provider. An acquaintance of my son who has a friend who is psychologist told him that the psychologist said that all her patients were anxious about their impending benefit reviews and that such anxiety and depression was overshadowing their treatment and consequently their progress, not to mention their entire lives. Not only are these reforms a financial detriment effecting any one with any sickness or disability, they are also psychologically damaging and far from being fit to work as ATOS the DWP and the government so glibly insist, all those effected are in fact less likely to be able to cope in the work place as a result of the trauma of mental torment accumulated over many months of this ongoing misery. Concerning the opening quote from Hubert Humphrey, 38th US Vice-President, I think government have failed this test don't you. January 21st Autism outrage I feel as though lately I have come to the end of my tether, if it is not one thing it is another. I am so sick and tired of the few in our society who with callous indifference destroy the lives of many without any forethought as to the impact of their actions. At least it appears that way. No for once I am not raging against the morally corrupt UK government, though I suspect the following outrage is related to the relentless and savage cuts in benefits, welfare , education and support for people with disabilities that is effecting many countries in an attempt to claw back the deficit caused by the greedy and corrupt banking system. Paranoid? Who knows. Most certainly the UK government will seize on the following to exclude a significant section of our society from claiming benefits. The powers that be who are hell bent in our society in abandoning the sick and disabled are for ever coming up with ways to discredit many of the most life challenging conditions. Such conditions referred to as invisible illness, for instance ME and Fibromyalgia. Even today it is one hell of a task to get a diagnosis for either of these conditions. It is also very difficult to get a diagnosis of many mental health conditions and many psychiatrists do their utmost to avoid doing so. No diagnosis of course means no benefit or a far less likelihood of being allocated benefit or getting the help you need. The latest problem There is a proposal to remove the separate diagnosis of Aspergers Syndrome AS from the next edition of the Diagnostic and Statistical Manual of Mental Disorders DSM. In recent years the diagnosis of autism has increased dramatically. More people needing support in various ways such as health, education and social services. More cost to governments. There has been increasing concern about the escalating increase in the diagnosis of autism, which is now allegedly up to one in every hundred. Their solution Reduce the number of people diagnosed with autism Method Find a cure for autism? No sorry, no cure for autism just yet. Alternately Change the diagnostic system so that certain subcategories, in this case AS and pervasive developmental disorder, not otherwise specified,”P.D.D.-N.O.S., of the condition do not exist consequently making it impossible for people to qualify for a diagnosis of autism. Well that will reduce the statistics I guess. But what about the impact on people with AS and P.D.D.-N.O.S the higher functioning end of the spectrum? The alarming increase in autism could be lowered if the way in which it is defined is changed!! Thus making it difficult , if not impossible for people to get the help they need as they would no longer qualify. Is this change taking place simply to reduce the statistics because too many people qualify for a diagnosis of autism. According to the New York Times the new definition would sharply reduce the skyrocketing rate at which the disorder is diagnosed (link to article further down). Not really the way to tackle an increase in a medical condition by pretending it does not exist by manipulating statics by altering the diagnostic criteria. There is also a drastic increase in obesity, will they change that definition to reduce the statics of the number of people who are obese? Regarding autism there are changes in the pipeline and a new definition is being proposed by a panel of experts appointed by the American Psychiatric Association for the fifth edition of its Diagnostic and Statistical Manual of Mental Disorders D.S.M.. I should just briefly mention here that autism is not a mental illness but a neurologically based developmental disorder, so perhaps we should in any case question its inclusion in a diagnostic manual for mental illness and consequently the authority of the American Psychiatric Association to make changes in the diagnostic criteria of autism or any other developmental disorder. This Manual is used world wide including here in the UK to categorise mental health conditions. So its not just a matter for concern for people in the USA. The new Manual will narrow the criteria for a diagnosis of autism. It is thought likely that the greatest change would be to those on the higher end of the autism spectrum, those who presently have a diagnosis of high functioning autism HFA or Asperger Syndrome AS What effect would these changes have in real terms The proposed changes would probably exclude people with a diagnosis who were higher functioning. “I’m very concerned about the change in diagnosis, because I wonder if my daughter would even qualify,” said Mary Meyer of Ramsey, N.J. A diagnosis of Asperger syndrome was crucial to helping her daughter, who is 37, gain access to services that have helped tremendously. “She’s on disability, which is partly based on the Asperger's; and I’m hoping to get her into supportive housing, which also depends on her diagnosis.” New York Times : New Definition of Autism Will Exclude Many, Study Suggests Read more: .nytimes.com/2012/01/20/health/research/new-autism-definition-would-exclude-many-study-suggests.html?_r=2&hpw At least one million people in the USA and an estimated 500,000 here in the UK have a diagnosis of an ASD including AS and pervasive developmental disorder, not otherwise specified, ”P.D.D.-N.O.S. People with these diagnoses have problems with social interaction as those on the lower end of the spectrum but do not qualify for a diagnosis of the full blown condition of classic autism. According to the above article the proposal is to merge all three conditions under one the category of Autism Spectrum Disorder. AS and P.D.D.-N.O.S. would no longer be included in the DSM. The diagnostic criteria would be more narrow, meaning many people would no longer qualify for a diagnosis of autism. A study undertaken in 1993 estimated that only about 75 percent of people with AS would not qualify and a staggering 85 percent of those with P.D.D.-N.O.S Read more in the Times article if you have not already done so .nytimes.com/2012/01/20/health/research/new-autism-definition-would-exclude-many-study-suggests.html?_r=2&hpw Why should a diagnosis of AS continue to be included in the DSM The diagnosis of AS provides a meaningful identity says Lucy Berrington a member of  the board of the Asperger’s Association of New England: Why is the Asperger’s label worth retaining? At the Asperger’s Association of New England (based in Watertown, Massachusetts), the largest and most established U.S. organization supporting people with Asperger’s, we see daily how powerfully and positively this diagnosis influences the lives of those with the condition. Before 1994, when Asperger’s syndrome was first included in the DSM, they wandered a diagnostic wasteland, sometimes picking up inappropriate labels—bipolar disorder, schizophrenia, OCD, atypical ADHD—that did little to clarify or address their needs. The Asperger’s diagnosis, in contrast, has provided meaningful identity and generated a tremendous international self-help movement. As Temple Grandin, a professor and a prominent autistic American, has said, the size and voice of the Asperger’s community is reason enough to leave the diagnosis in place. A corresponding profusion of literature and research has facilitated leaps in understanding among individuals, families, educators, and clinicians. A simple qualitative scale cannot serve this community and culture Read More thedailybeast.com/articles/2011/05/21/aspergers-removed-from-the-dsm-how-will-it-affect-autism-patients.html Besides the implication of social services, education, health care in countries like the USA, and indeed here in the UK where such is hard to come by in any case, it will have an impact upon how many people define themselves and may as the above article suggests leave many adrift in a diagnostic wasteland or receiving inaccurate diagnosis of conditions such as bipolar, ADHD, OCD, though I consider that the aforementioned can present co morbidly with AS, a single diagnosis of any of these conditions with out AS would be inadequate. Here in the UK most likely a person who presently has a diagnosis of AS may well receive no diagnosis what so ever. This news came as a big shock to my son and I yesterday when he read about this on his ipod in the New York Times article linked above. My son as those of you know who visit here regularly has a diagnosis of AS. I consider myself to also have AS in addition to my OCD as I have explained at length here. Even before this proposal it is often very difficult for an adult to get a diagnosis here into the UK and the older you get the less they want to assess you, unless of course you can afford the £15000 private assessment fee, which most of us can't. However my son was fortunate to have psychologist who arranged for him to have an assessment. The diagnosis has given him answers to why he is different. Why certain aspects of his life are not the way they should be. Why social interaction is awkward. The identification with a condition has made him a part of a community of fellow suffers with whom he can identify. My concern is that without the identifying label of AS those who do not qualify for the Autism spectrum Diagnosis will once gain return to feeling like " Strangers in a Strange Land" feeling isolated with no explanation as to why this is so. Which once was the case for my son and I and thousands of others with AS either formally diagnosed or self diagnosed. " Strangers in  Strange Land" Is a reference to the a 1961 science fiction novel by  Robert A. Heinlein. It tells the story of Valentine Michael Smith, a human who comes to Earth in early adulthood after being born on the planet Mars and raised by Martians, a comparison often made in association to what it is like to have autism "For many young people with autism, venturing out into the adult world is akin to Valentine Michael Smith's journey to the planet Earth from outer space in the 1961 science fiction classic Stranger in a Strange Land, by Robert A. Heinlein.  Like Smith, a human raised by Martians on Mars who returns "home" to Earth as a young adult, today's 20-somethings with autism often feel like strangers among their own species when they leave the legal protections afforded schoolchildren to enter the adult world of limited support services, long waiting lists, and scant funding. Those who become accomplished sometimes look back on their experiences to reflect on their sense of alienation in a society that doesn't look favourably on those who don't blend in easily." "The common thread running through the social group's discussions was a sense that autism's social impairments, some of which may seem superficial in many of those with high-functioning autism or Asperger's syndrome, permeate virtually every aspect of adult life: initiating intimate relationships, developing rewarding friendships, and sustaining challenging, fulfilling employment. Adults with autism are inclined to flounder in the face of ever-shifting social conventions, a tendency that can be particularly debilitating in the workplace. An employee's lack of social prowess can make all the difference between success and failure, eventually limiting advancement opportunities, salary, or duration of employment. Studies and anecdotal reports from adults with ASDs describe social blunders with supervisors and co-workers, an inability to discern the political winds in the office, and struggles with recognizing and defusing interpersonal conflicts, any of which could lead to job loss." Extracts from Adult Employment: Strangers in a strange land Continue reading the complete article which highlights the difficulties with lack of support in the work place with a diagnosis of autism including AS. With out a diagnosis there would be even less support in all situations. Remember the majority with an AS  diagnosis will not qualify for a diagnosis of autism spectrum disorder under the new more narrow criteria.  iancommunity.org/cs/articles/strange_land Here is how a person with AS defines his diagnosis That is my spot, in an ever changing world forum user http://www.wrongplanet.net/postt179394.html I cannot understand why we here in the UK have not heard about this proposal before and it appears that the National Autistic society knows nothing about it, at least there is no mention of it on their website as far as I am aware. I am concerned about the future for my son. What diagnosis will he have here in the UK, most likely none at all. He was fortunate last time to get a diagnosis for AS, psychiatrists and psychologists here don’t want to assess you and give you a diagnosis they simply want to offer you what treatment is available, which is precious little other than CBT and medication. I recall that until I went into a psychiatric hospital I was diagnosed with anxiety, I did not get the diagnosis of OCD until that time. Anxiety does not fully explain the condition of OCD. Agoraphobia is also an anxiety disorder but it is very different from OCD. Classifying the two anxiety disorders without any clarification is bewildering and hindered my own research into managing the condition or finding others who suffered similarly. It was a great impediment in getting treatment. I recall being assigned to group therapy, most of the others had agoraphobia and various other phobias and my bizarre OCD manifestation made me frankly feel a freak and it was only with determination that I continued therapy. Like OCD and agoraphobia  both of which are classified as anxiety disorders classic autism and AS are all forms of autism but AS is different than classic autism, you cannot lump the two into one category anymore than you can with OCD and agoraphobia. If AS is removed from the DSM it will have an impact on hundreds of thousands of people with AS and their families here in the UK and across the world. The most serious aspect which many people in forums and so on seem to have been missed is that the diagnostic criteria will be more narrow thus eliminating many Aspies from inclusion with the consequent loss of social services and benefits a long with a loss of identity, most particularly for adults with AS. Maybe even children. I had what in retrospect now appears to be autism like behaviours as a child, most memorable of which was screaming in the street for which I was prescribed a sedative, but no diagnosis and no therapy. Why change anything? One gets so weary of the way people such as the American Psychiatric Association alter the DSM with little regard for the effect it will have. No doubt in their minds it is positive move. However from the perspective of many people such myself and my son we grow weary of being messed about like pawns in some perverted game without our opinions being taken into consideration. Rather like the UK government's unfair welfare reforms such changes are devastating. What with this and the aforementioned reforms the lives of many people are being torn apart. And people wonder why I refer animals. I mean who the hell do these people think they are, what right have they? Again I ask should autism as a development disorder not a mental health condition be included in the DSM in the first place? You receive a diagnosis of a condition one minute and the next they say it does not exist which for all intents and purposes will be the case if AS is excluded from the DSM We need to question who has the right to so seriously play with our lives. What a wonderful opportunity for the unethical government who are so keen on ruining people's lives with drastic cuts to benefit and medical care to cast a greater number of people on the scrap heap of poverty with no help whatsoever. This is quite a lengthy topic about which I have not yet adequately comprehended so may add more on this subject from time to time. For now I have included this entry as a matter of interest and you should research the issue yourselves. We need to make our opinions known. We must not leave it too late as appears to be the case with welfare reforms though there is always the chance of change though in the long term. Links Diagram of Percentage who would qualify under new definition. As you can see a significant number of people with a diagnosis of AS and PPD-NOS would be excluded. What happens to these people, are they considered as not suffering with autism or any other condition or will they once again return to the inaccurate diagnostic system mentioned earlier or receive no diagnosis at all. What will be the length of the interim period during which medical professionals will need to learn and implement the new category. http://www.nytimes.com/interactive/2012/01/20/us/redefining-autism.html January 22nd Firstly more information concerning the American Psychiatric Associations' proposal to alter the diagnostic criteria for autism which will exclude the diagnosis of Aspergers Syndrome AS and pervasive developmental disorder, not otherwise specified,”P.D.D.-N.O.S. You can read more about this in the entry above. For more balanced information than that in the New York Times please visit thAutcaste.com http://thautcast.com/drupal5/content/dsm-5-pandemonium-updates-and-worthwhile-reading Also please be sure to sign the following petition: http://www.change.org/petitions/american-psychiatric-association-maintain-the-current-definition-of-autism-dsm5 I will write more about this matter over the coming days and weeks as this is of serious concern to people with the above diagnoses. Now on to a different subject which I have prepared before the above information was brought to my attention. Today I include a link to an interview of Ian Duncan Smith IDS, work and pensions secretary,  by Nick Robinson political editor for the BBC. In the interview IDS made the outrageous comment that those effected by the drastic welfare reforms were not suffering.  I would think though that by now such an outrageous comment is widely known. Nevertheless it needs mentioning again as the more people are made aware of how unethical, uncaring and driven the government are to get what they want, not only despite the suffering it is causing to people who depend on benefits, but to deny that those effected are suffering. How low are they going to sink when this man has the audacity to say that the welfare cuts are not making people, including the disabled, suffer. In the interview referring to tax payers Nick Robinson asks IDS "What they don't like hearing about is the many, many thousands of people now who - because of cuts to disability benefit and cuts to employment and support allowance and cuts to housing benefit - are now really suffering. It's a way of distracting people." IDS: "But they're not suffering. The point about this is that what makes you suffer is the state that plunges you into dependency on the state. It does two things, it means bigger bills for taxpayers and it means your life and your children's lives will be blighted by being dependent on me, the secretary of state, to give you the money to live". Of course they are suffering. I wonder how well IDS would cope with living on the pittance that the government doles out to people who are sick, disabled or unemployed through no fault of their own. You over privileged people have no idea what it is like to live on a meagre income which barely rises year in and year out though the cost of living is sky rocketing. When people have to choose between heating and eating . Of course they are suffering. Its alright to glibly say that people should not be dependent on the government but unfortunately many people are, it is a sad fact of life. Many are too ill or disabled to work. Living with a disability it is difficult enough to get though the day. Every task is a momentous effort, takes longer and in some cases may be impossible depending on your illness or disability. The greedy exploitative work place is not a place generally speaking for sick and disabled people. There are few jobs if any for people who cannot keep up with the pace in this greedy unforgiving exploitive world of ours. A climate of greed that has been created by the conservatives under Margaret Thatcher. However even she did not stoop so low as to carry out such aggressive reforms that are plunging people into poverty and misery. Can Duncan-Smith, Cameron, Freud, Greyling not imagine what it is like to feel this dreadful insecurity not knowing if the tiny mount of money you are expected to live on will be drastically reduced or suddenly taken away. The governments' PIP replacement of DLA will see 500,000 disabled people exempt, people who once quailed for DLA because the government has designed the new benefit to do precisely that, deprive people of money which they desperately need in order to have any small part in society. In a previous entry I included a face book page that demands that Cameron have a psychiatric assessment, facebook.com/pages/We-demand-David-Cameron-undergoes-psychological-assessment/ I think it is high time the same was requested for IDS, and the others mentioned above. Surely it is not rational to expect sick and disabled people to work. Or for people to find jobs that simply are not there. THERE ARE NO JOBS. Or to be precise very few jobs. Do you know that in some areas there are twenty unemployed for one job vacancy. Why can't anyone see that. But of course they know this do they not. The whole reform is about saving money. Shame on you. Persecuting people on benefits. Yes persecuting. Yes I know the above is the same tired old rhetoric regarding the government's behaviour, about as tired as their own, but we have to keep up the pressure, we have to be informed and be aware. You would be surprised how many are oblivious to what is happening no doubt preoccupied with the struggle to survive in this world of ours with many living on low pay, working long hours and coping with rising costs and so on. I think life for most people except the very rich these days is a misery. What right have the greedy minority or indeed anyone to use and exploit others and by doing so to make peoples lives a misery. Anyone who lived in the sixties knows how different life was once. Of course it was not perfect but people were in the main happier. unemployment was low, there was job security. You could leave one job in the morning and by the afternoon have had an interview and secured a job to begin the next day. Jobs in manufacturing were well paid and the now much maligned trade unions looked after your interests. Employers could not get away with not paying you a rise, or not paying overtime or any of the outrages that exist unchallenged in the modern workplace. The conservatives destroyed the unions and persuaded people that it was a good thing. I wonder how many think that way now when they face pay freezes. The conservatives destroyed industry and now they have the audacity to treat the unemployed as though they are parasites and "scroungers" living a life of luxury. There is hardly any industry left. Has it ever occurred to the government that many people cannot do the the few jobs that are mostly available now, not everyone has the skills that are required for white collar jobs or the service industry or retail. We are not all the same and no amount of pointless inadequate job centre training schemes will produce jobs or make everyone able to do them. I worked in manufacturing and retail when I was younger, I doubt I would be able to cope with the type of work that is available today. What they want to know is, actually, someone living in Kensington who can't afford that house normally and couldn't [if they were] in work, I don't think I should pay for that". Who does IDS know on benefits living in Kensington. Get real! if by some chance this has happened this has been an oversight by the DWP and is rare, if indeed this really happens at all, certainly not on a regular basis. Speaking of people living in affluent circumstances collecting benefits. I would be interested to know how many MPs collect child allowance when they really do not need it. We all know Cameron claimed DLA on behalf of his son and it is even reported he had free nappies from the NHS. How many retired MPs, peers and other wealthy people collect their state pension. No I am not implying that child allowance and pensions should be means tested. Indeed most certainly not. I am simply making a point that many MPs and others who cry "scroungers" when genuinely sick, disabled and unemployed require benefits are themselves quite prepared to take benefits that they do not need. On Monday there is another debate in the house of Lords. This time it is regarding the exclusion of child allowance from the benefit cap. IDS insists that he'll simply get MPs to reverse the decision if he loses. "(The Lords) need to recognise that we are determined as a government to get these reforms through, and if they have to come back to the Commons and if we have to take them back to the Lords I will do just that, because British taxpayers paying their money must believe that the system is fair to those who need it and to them who pay the money". This type of determination is scary is it not and certainly not democratic Please read the complete interview http://www.bbc.co.uk/news/uk-politics-16656824 More on the benefits cap debate “The proposed welfare cap will hit vulnerable families hard, especially those with two children or more and those living with high housing costs in London or the South. It will also impact on the ability of Family Action to work positively with families with multiple problems and help them get back on their feet and provide a stable home for their children to flourish. Family Action Chief Executive Helen Dent Couples Hit By Welfare Changes, Family Action Study Reveals  Press release family-action.org.uk/uploads/documents/Press%20Release%20-%20Couples%20Hit%20By%20Welfare%20Changes.pdf There seems to be little support for people effected by this reform, yet it too is unjust, unfair and a detriment to unemployed families who are suffering from circumstances beyond their control. Here is the shocking reality that few seem aware of or care about. Below are some example of the shocking outcomes of the benefit cap The welfare caps would affect Couples substantially more than Lone Parents. This would damage incentives to enter relationships and could break up families. The impact would be particularly great where two Lone Parents decide to move in together. Two Lone Parent households with 2 children each (with £200 rent) would be unaffected by the caps. However, if they move in together and get a slightly bigger property to share (£300 rent), the couple would lose £9000 per year compared to now. Families with one earner who loses their job will be particularly hurt by the caps. This could cause homelessness amongst hard working families who lose their job through no fault of their own. Read more in the full report http://www.family-action.org.uk/uploads/documents/The cap doesn't fit.pdf Press release and Full reports above into the benefits caps published by: family-action.org.uk/home.aspx?id=11578 More information Welfare reform bill - household benefit cap live discussion Government faces further controversy as Lords prepare to debate proposed £26,000 family benefit cap by Patrick Butler Welcome to day seven of the Welfare Reform bill live blog. Today we'll be looking at the bill's controversial proposals to introduce a £26,000 cap on household benefits. The proposals will be debated in the Lords on Monday, amid speculation that ministers may face a rebellion from Lib Dem peers unhappy at the potentially "draconian" impact of the cap on disadvantaged families The government wants to limit total benefit payments (including job seeker's allowance, housing benefit, child benefit and carer's allowance) to £500 a week for families (£350 for childless single adult households). It estimates 50,000 households will see benefits cut, losing average of £93 a week. It believes this will produce savings of £270m a year Read more about the detrimental effect this will have on many families who are already struggling to feed their children and to heat their homes not to mention paying the huge mortgages or rent. guardian.co.uk/society/blog/2012/jan/19/welfare-reform-bill-household-benefit-cap-live-discussion Also included are comments concerning the Spartacus report Regarding the issue of a benefits cap which is as important as previous aspects of this draconian welfare reform bill, I sincerely hope that once again peers in the house of Lords will do the right thing by people who are already finding life difficult. And do not forget many of these families may well include a sick or disabled person. Fingers crossed for another government defect on Monday!!!!!!!   On Monday the Lords will debate proposals to exclude child benefit from the new cap, reducing its impact on large families. Take Action If you think that child allowance should be excluded from the benefits cap please write to crossbench peers in the house of Lords and ask them to vote to exclude child benefit from the benefits cap  Here is a list of peers who took part in the ESA debate who may support the proposal to exclude child benefit from the welfare cap.  http://www.parliament.uk/business/publications/business-papers/lords/lords-divisions/ Also Lib Dem Peers: Here is a list of Lib Dem peers http://www.libdems.org.uk/peers.aspx   Again it is a bit late and I can't find organised support for this reform, but do what you can if you feel able to protest against the benefits cap. You can now only contact peers by e-mail as post will not now arrive in time. Here is a list of crossbenchers with e-mail which I included for the DLA debate. Crossbenchers e-mail addresses Note the suggestion above the list to mass mail was suggested as in the case of the DLA debate there was only a few hours to go. You can either do the same with this email or just pick out the individual names of as many as you can write to Here is a list of lib dems who have e-mail addresses lib/dem peers e-mail More on the Spartacus Report What next for the Spartacus welfare campaign? By Sue Marsh Hundreds of people have asked me "So, what next for Spartacus?", the welfare campaign named after the report I co-authored with dozens of other disability rights activists. Well, who knows? After all, no one knew where it came from. We ran the Spartacus campaign privately, by email, which meant we could launch a new "action" or campaign every day and take politicians by surprise. They didn't know what we had planned, or how long it would go on for. They didn't know how many of us there were, or who we were meeting and working with. Crucially, they didn't know what might happen if they didn't engage. They still don't. What we do know is that Tuesday was just one small step in our campaign. There are a few subjects left to debate in the Lords – the benefit cap for one should provide even more welfare drama, as this issue has stirred the Lib Dems from their apparent stupor, and more last-minute compromises are to be expected. Next comes the third and final reading of the bill. Peers will get one last chance to consider any amendments and give barnstorming speeches of piqued outrage. There may be some excitement, too – the Lords have not been shy to show how unimpressed they are, as a whole, with the bill. Today, campaigners are scrutinising the new "thresholds" for disability in confusion and horror. Confusion because they are so complicated, and the government claims it can't do an easy-read version for one of the very groups who will be hardest hit – those with learning difficulties. Horror as people find that being in a wheelchair is no reason to claim they have difficulty getting about, and that the state now only believes that being able to wash from the waist up is necessary to maintain personal hygiene. As most of the more "able" sleepwalk in oblivion towards a future they could never imagine, we lurch dangerously closer to disability denial by the day. Please read the entire article below if you have not already done so http://www.guardian.co.uk/commentisfree/2012/jan/19/what-next-sparticus-welfare-campaign?CMP=twt_gu January 24th Bravo once again to the house of lords peers for doing the right thing and voting for child benefit to be excluded from the benefit's cap. Another defeat for the government, another victory for good over evil, justice over injustice. Though unfortunately this is not final A spokesman for the DWP said “We are determined our reforms will be implemented in full and we will take this back to the House of Commons to reverse tonight's decision,” How democratic. What is the point of bills going through the house of lords if the government can over turn them if they are determined to do so.  Furthermore I am tired of what can only be described as their lame justification for their bloody determination against all odds and opinion to get their own way. You know the supposed justification of which I speak, you must have heard it now so many times by various politicians, no doubt Iain Duncan Smith (IDS) himself and nameless DWP spokespersons, such as the one quoted yesterday a BBC news article   "If you take child benefit out of the cap it will simply become ineffective, failing the very principle of our reforms, which is to bring fairness back into our welfare system while ensuring that support goes to those who need it. Pleaseeeesssssss this rhetoric is so worn out, over used and such a transparent lie considering how the government's reforms are destroying the lives of the disabled and the chronically sick with the reduction in income and forcing many to seek jobs they are too ill to do. The so called justification of  "ensuring that support goes to those who need"  is not only ludicrous but deceitful and most people surely must be aware of this considering the serious determents the welfare reform bill has had on the sick and disabled. Those who really need it. If the sick and disabled do not really need it and as (IDS) says "do not suffer" then who does need it, certainly not the corporations who get away with not paying their taxes such as Voda Phone. The problem is that those who need it, it being benefits of course, are no longer going to be entitled to them, at least a significant percentage are not. The new PIP benefit which replaces DLA will see 500,000 who now currently receive DLA no longer qualifying under the new rules of PIP.   IDS claims the benefits cap for people out of work could save about £600m towards deficit reduction. Big deal, surely a drop in the ocean at the expense of the wellbeing of unemployed families including children who would be thrown into poverty if the governments gets its own way with this reform. The national debt is around £900 billion debtbombshell.com/ the above saving is negligible. Incidentally I would very much like to know precisely who we own this money too. A Department for Work and Pensions spokesman said: "We are very disappointed by this decision and it clearly flies in the face of public opinion. There has to be a limit on the amount of money benefit claimants can receive.   Public opinion? No one asked me. If public opinion does support the government concerning the benefit cap it is only because of adverse government propaganda perpetrated by the media much in the way that such has been used to label the disabled and sick as "scroungers" I have to leave it there I have a shocking headache after a restless night of head pain. Life now is just such a misery for everyone or rather the one percent, the unemployed, those on low wages, those suffering the effect of pay freezes, the sick and disabled all struggling to cope against the onslaught of the  rising price of food, the escalating cost of heating, rent and mortgages while combating a government hell bent on lowing the standard of living for most everyone except the very rich. It is a constant battle on many fronts and these days I feel though there is no where to turn.  We cannot allow these injustices to go unchallenged  and I hope to do my bit however small. Here is an example of the detriment the benefit cap will have as poor families have to cope with the cost of heating their homes If you are concerned about how low income families with small children pay their energy bills , please read and sign the following Save the Children petition No Child Should be Left in the Cold by Rising Fuel Bills This winter, hundreds of thousands of children like Joe and Wesley could be left in the cold because of rising energy costs. No child should have to wear hats, scarves and gloves in their homes to keep warm. No child should have their health put at risk because their families simply can't afford basics like heating. It's time for the big energy companies to do their bit. Please read more by clicking the petitions tab and sign the petition: thepetitionsite.com/takeaction/163/836/564/?z00m=20182145 If any one notices anything wrong with the formatting on this page which involves missing text please let me know. I am experiencing problems with the layout that is why the dates appear on two lines. I think it is because I have pasted other people's formats in from other websites. I am not well enough to sort this out as it would be considerable task. But I need to be sure that at least none of the text is missing. So if there is please let me know. Thank you. More about the benefit cap: www.bbc.co.uk/news/uk-politics-16694991 http://www.guardian.co.uk/politics/2012/jan/23/welfare-reform-benefit-cap-questions-answers January 25th It appears that knowledge of the changes to the  DSM, Diagnostic and Statistical Manual of Mental Disorders, have been around some time and there is some mention of it on the National Autistic society's NAS website. Not in any prominent place however despite its huge importance to the Autism community. Do the NAS agree with the new proposals concerning the removal of the diagnoses of Aspergers and pervasive developmental disorder, not otherwise specified,”P.D.D.-N.O.S.and childhood disintegrative disorder. According to two reports generally speaking they do but with some reservations, including the possible need for re-assessments. You can read about the NAS's response and down load the reports: the Discussion Paper, Changes to autism in DSM-V and Response to the APA, Comments on the APA’s proposals on autism spectrum disorder within DSM 5.  autism.org.uk/about-autism/all-about-diagnosis/proposed-changes-to-autism-and-as-diagnostic-criteria.aspx Why this report is tucked away not only in a position that is not prominent but almost hidden. I had to Google to find it rather than go directly to their website as it was impossible to find. It appears that until the New York Times article last week few people had any idea what was happening in regard to the possible exclusion of the above conditions from the DSM. As I have already mentioned above the DSM will now use only one diagnosis of Autism Spectrum Disorder into which the above diagnoses will be included though they will be categorised under three levels according to severity along with the level of support those placed in each category will require. At least this is what I understand as such things are never make clear comprehensible reading for the average person do they. Regarding the level of support recommend for each category I rather think that his cannot be adhered to in any hard and fast sense as most people on the spectrum will have co morbid( co existing conditions) that will effect the level of support required. For example my son in addition to AS suffers with depression, anxiety and traits of OCD. Concerning my son's personal circumstances other than CBT with a psychologist, which for him has gone on for well over a year which I understand is unusual nowadays here in the UK, he gets no other support except medication. Neither of these interventions have done much to improve his situation and soon his consultations, which are getting increasingly further apart, will come to an end. I would imagine that people with a diagnosis of AS would be included into level one. Though this is just my assumption of course. However, and here is the concern, it is estimated that 75 percent of people, children and adults, will not qualify for the new category as the criterion is more narrow. Though according to the NAS this estimate is a little high. Also as already stated I am concerned that it will be difficult to even get an assessment here in the UK, at least one undertaken by the NHS. I of course do not know how realistic these fears are. Maybe those with an existing diagnosis will simply be incorporated into the appropriate category without the need for an assessment which of course will take time to implement and will add a burden of cost to the NHS. At this juncture it is all just so uncertain because these changes are proposals and we will not know until the end of the year if they will be implemented. So there is still time for people to raise objections, if you wish to do so there are addresses and links to petitions further down. The thing is, this will be hanging over us for nearly a year and it is distressful and adds a new dimension of anxiety to lives which are already filled with anxiety, depression and in some cases hopelessness. Yes what with this and the battle over welfare reforms, the privatisation of the NHS and other detriments the struggle to just get on with your life in whatever way you can becomes increasingly difficult. This is another way in which faceless indifferent people are effecting the lives of thousands without it seems being aware of the implications, or they are simply not caring about the implications or see the situation from a bickered perspective along the the lines of the philosophy of what they consider the greater good.  All I see is the destruction of people's lives,  people who have had the diagnosis now for twenty years who view it as part of who they are, giving them a sense of identity, a place in the world and making them part of a community. I would not say that any other medical condition gives one a sense of identity but in the case of Aspergers this is most definitely so. AS has become a subculture. The loss of the above diagnoses could leave many floundering in a abyss of no diagnosis or incorrect diagnosis. It will certainly leave many people with a feeling of insecurity for a long time. I have not made much comment on either P.D.D.-N.O.S.and childhood disintegrative disorder because I am not familiar with these conditions or the effect the new changes will have on those who have these diagnoses The autism epidemic is a reality. Altering the criteria to exclude seventy-five percent of one category, AS,  will not change the fact that the numbers of people with autism has increased and that is because medical professionals are now more aware of autism and it is better diagnosed. Were  my husband and I children now we both would most likely qualify for a diagnosis of autism. Instead my screaming in the street and other behaviours was treated with what was described as a sedative and my husband was regulated to the back of the class to play with Plasticine because he was considered to be deaf, which of course he was not. Both of us were considered to have learning difficulties and I was put into a special class. The new Autism Spectrum Disorder criteria Here is a link to the proposed new diagnostic criteria: dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=94# Reading through it just now I could not help but feel some amusement when reading section B  No 2     Excessive adherence to routines, ritualized patterns of verbal or nonverbal behavior, or excessive resistance to change; (such as motoric rituals, insistence on same route or food, repetitive questioning or extreme distress at small changes). Ironic is it not that the American Psychiatric Association APA  are about to implement a huge change to the lives of people who are severely effected by extreme distress at even small changes and the change of the name of your diagnosis is not exactly a small change, most particularly if you finish up with no diagnosis or you cannot get a new diagnosis. Which of course is a likely outcome for adults with AS here in the UK where it is never easily to get an assessment. I can certainly assert that this proposal is causing extreme distress, anxiety and depression for both my son and I. Action you can take If you are against the proposal to remove the diagnosis of AS, as separate condition you can: Sign a Petition if you have not already done so to keep the autism diagnosis as it is including AS . change.org/petitions/american-psychiatric-association-maintain-the-current-definition-of-autism-dsm5 Write to the members of the committee responsible for the implementation of the changes in  DSM V stating your objections and how they effect your life or the person under your care. The DSM-5 Task Force is chaired by David J. Kupfer, M.D., and Vice-Chair Darrel A. Regier, M.D., M.P.H. The members of the DSM-5 Task Force include the 13 chairs of each diagnostic work group as well as key experts in psychiatric treatment, research, and epidemiology You can obtain contact details by clicking on each name. Though there are no e-mail addresses you can most likely track down each person's e-mail and when I begin writing to them and I find the e-mail address I will include them in a later entry. It might though be better if you can afford the cost of postage to send a letter by regular mail. Often a letter is more effective than e-mail which may easily be lost or ignored. Committee members contact numbers: dsm5.org/MeetUs/Pages/TaskForceMembers.aspx There have been hints since as early as 2009 that AS was to be excluded, it being blamed for the rise in autism Much of the growing prevalence of autism, which now affects about 1 percent of American children, according to federal data, can be attributed to Asperger’s and other mild forms of the disorder. Read more nytimes.com/2009/11/03/health/03asperger.html?pagewanted=all What  prominent autistics and other experts say on the matter Temple Grandin The most famous person with autism is probably Temple Grandin professor of animal science at Colorado State University, who says :   The Asperger community is a big vocal community, a reason in itself” to leave the diagnosis in place. Tony Attwood Tony Attwood an English psychologist and author of several books on AS who lives in Queensland, Australia says that the loss of the diagnosis will deter people who are mildly affected from seeking an assessment. The general public has either a neutral or fairly positive view of the term Asperger’s syndrome. But if people are told they should be evaluated for autism, they will say: ‘No, no, no. I can talk. I have a friend. What a ridiculous suggestion!’ So we will miss the opportunity to assess people.” Simon Baron-Cohen Simon Baron-Cohen professor of Developmental Psychopathology in the Departments of Psychiatry and Experimental Psychology at the University of Cambridge in the UK, referring to the proposed changes to the DSM regarding AS, says: So what should we do about Asperger syndrome? Although originally described in German in 1944, the first article about it in English was published in 1981, and Asperger syndrome made it only into the fourth version of the manual, in 1994. That is, the international medical community took 50 years to acknowledge it. In the last decade thousands of people have been given the diagnosis. Seen through this historical lens, it seems a very short time frame to be considering removing Asperger syndrome from the manual. We also need to be aware of the consequences of removing it. First, what happens to those people and their families who waited so long for a diagnostic label that does a good job of describing their profile? Will they have to go back to the clinics to get their diagnoses changed? The likelihood of causing them confusion and upset seems high. Second, science hasn’t had a proper chance to test if there is a biological difference between Asperger syndrome and classic autism. My colleagues and I recently published the first candidate gene study of Asperger syndrome, which identified 14 genes associated with the condition. We don’t yet know if Asperger syndrome is genetically identical or distinct from classic autism, but surely it makes scientific sense to wait until these two subgroups have been thoroughly tested before lumping them together in the diagnostic manual. The Short Life of a Diagnosis  By Simon Baron-Cohen Please now read the complete article .nytimes.com/2009/11/10/opinion/10baron-cohen.html?ref=opinion Yesterday my son had a consultation with his psychologist to whom he expressed his concern. She appeared not to be aware of the changes as such but did say that they in any case mostly adhered to the World Health Organisation's WHO diagnostic classifications. Which is varified in the NAS report mentioned above which I quote below There are two main international diagnostic classifications, used by clinicians to identify and diagnose conditions including autism spectrum disorders. These are: • The International Classification of Diseases 10th edition, ICD-10 (1992), produced by the World Health Organisation. This is widely used in the UK and Europe. • The Diagnostic and Statistical Manual 4th edition, known as DSM-IV, published in 1994 by the American Psychiatric Association (APA). This is used particularly outside Europe, but it is highly influential worldwide. Nonetheless we should not be complacent after all we do not know that the WHO will not alter its criteria in line with the DSM. The American Psychiatric Association has contributed to the WHO's The ICD-10 Classification of Mental and Behavioural Disorders which you can obtain by clicking the link below Several national psychiatric bodies encouraged the development of specific criteria for classification in order to improve diagnostic reliability. In particular, the American Psychiatric Association developed and promulgated its Third Revision of the Diagnostic and Statistical Manual, which incorporated operational criteria into its classification system. http://www.who.int/classifications/icd/en/GRNBOOK.pdf So we should continue to raise an objection. Also we need to support all Aspies world-wide. Please sign the petition and write to the APA committee members and pass the word around to anyone who may be effected by these changes. Links to more information Asperger's Syndrome in the DSM - V The DSM-V isn't due out until 2012 or 2013, but they are planning to eliminate the subcategory of Asperger's Syndrome. We need to speak up! People who have Asperger's Syndrome, or those knowing of a loved one with Asperger's Syndrome need to speak up and have our voices be heard. The DSM-V needs to keep AS and not call it an Autistic Spectrum Disorder (ASD). Eliminating AS would reduce any benef...its and understanding Aspies could receive from work, school, home, or therapy. Grouping AS into ASD would also reduce chances for those unknowingly possessing AS to be diagnosed and helped. Read more: facebook.com/group.php?gid=346987250688&ref=ts   The American Psychiatric Association DSM 5 Development Publication of the fifth edition of Diagnostic and Statistical Manual of Mental Disorders (DSM-5) in May 2013 will mark one the most anticipated events in the mental health field. As part of the development process, the preliminary draft revisions to the current diagnostic criteria for psychiatric diagnoses are now available for public review. www.dsm5.org/Pages/Default.aspx More information about DSM V from wikipedia http://en.wikipedia.org/wiki/DSM-5 New Definition of Autism Will Exclude Many, Study Suggests nytimes.com/2012/01/20/health/research/new-autism-definition-would-exclude-many-study-suggests.html?_r=1 thAutcast.com A Blogazine for the Aspergers and Autism Community Various comments on the DSM proposal thautcast.com/drupal5/content/dsm-5-proposed-autism-diagnosis-changes-reactions-around-web thautcast.com/drupal5/content/dsm-5-pandemonium-updates-and-worthwhile-reading thautcast.com/drupal5/content/dsm-5-proposed-autism-diagnosis-changes-reactions-around-web Personally I think all those who have a diagnosis of AS at the present time should keep the diagnosis and only those who are to be diagnosed for the first time should be included in the new diagnostic criteria. Though I consider that all round it would be best simply to leave things as they are and continue to include Aspergers Syndrome in the DSM. At the end of the day the new proposal will not improve the situation for people with autism and in many cases will find many without services and the help they need. Then in another twenty years time someone else will come along and once again make changes . I grow weary of the way such things happen with alarming frequency which achieve little good. For example when I first became aware of my OCD the condition  was called obsessive compulsive neurosis. OCD or obsessive compulsive neurosis, in the end I still suffer and continue to suffer, regardless of the name nothing much changed Asperger syndrome is a now well-known a term that most in society are familiar with. This gives Aspies an edge they did not previous have when trying to explain their conditions for instance in the work place, school or college and so on. I don't think autism spectrum disorder level 1 or whatever is quite going to have the same effect. A minor consideration I know but important  to some suffers such as my son and I Important note I am not a medical professional. I have researched the above as best I can. I cannot guarantee absolute accuracy particularly as there are just so many conflicting opinions and information right now . You are advised to check information for yourselves. January28th Urgent! There is an urgent need to write letters/e-mails to MPs within the next few days concerning the welfare reforms. The welfare reform bill will go back to the Commons on Wednesday 1st February so letters and e-mail need to arrive before than. It is easier if you read the information pasted below and visit the websites where you will find more information and templates for you to use for your letter or e-mail. There is also a list of MPs postal and e-mail addresses. As the time is short it may be best to e-mail. Though letters may be more effective.  However it would be best if sending a letter to post it today or Monday as even first class these days the post is not as reliable as it once was. It is a good idea if you include your address in e-mail the way you would do in a letter, this way it is more likely to be read. Please read more from: We are Spartacus: Disabled people's views on welfare reform Contains links to letter templates:   URGENT! Write to your MP NOW Posted by Jane on 27/01/2012 We have recently found out that the government intends to debate the Welfare Reform Bill on Wednesday 1 February and to seek to overturn the Lords’ amendments on that day. We all need to write to your MP’s to encourage them to vote to retain the amendments voted through in the Lords and not to allow the government to use financial privilege to overturn the will of the House of Lords. In my experience, many MP’s use part of their weekend to catch up on email correspondence, so could I encourage you to send your letter/email to your MP straight away (downloadable templates below). Please continue reading for more information and templates for you to download to use to write to you MP http://wearespartacus.org.uk/ More information and action you can take Please read the following from the Diary of a benefit scrounger What can we do Now? So, as you may have heard, the welfare reform bill will go back to the Commons on Wednesday 1st Feb. That's just one day after the third and final reading of the bill in the Lords. We are all beyond exhausted. Many of us have made ourselves terribly unwell as we fought the worst aspects of the bill. It seems a cruelty to have to prepare for the commons so quickly, but in a fight that has been unpleasant and cruel all the way through, we should expect no less. It means that spartaci across the internet must summon up a few more ounces of effort for a little while longer. Since the Responsible Reform report was launched, we now have a Facebook page  and a  website. People with their own ideas and plans can join the groups and help with many projects - from going through the new PIP thresholds to writing emails. Do take a look if you have some energy to help. Today, I'm working on a template email that the wonderful people at Church Poverty Action are designing for us. You will simply have to put in your postcode and a letter tailored to your own particular MP will appear. If you can personalise it with your own experiences of ESA or PIP, all the better, but I should have the template for you to use very soon. Continue reading for more information and other action you can take such as writing to your local newspaper. http://diaryofabenefitscrounger.blogspot.com/2012/01/what-can-we-do-now.html Important! The templates mentioned in the above information are of course now available as mentioned above To obtain them Please click here if you have not already done so. Here: http://wearespartacus.org.uk/ Also please pass on the information on twitter, facebook, forums, blogs Write to your own MP first but it may be an idea to write to some of the others so they get a good idea of public opinion. Though it may be best when writing to MPs from other constituencies to say you are not a constituent but feel you need to make sure as many MPs as possible understand the detrimental effects  their actions will have on people who are sick and disabled. Try to personalise the template letters but do not worry if you cannot, better to send a form letter/email than no letter at all.   Again please do the best you can. I know it is all rush and last minute but unfortunately this information has only recently become available. I thought there would be weeks before this debate would take place. January 30th I can't write much as I am really ill after doing too much e-mailing of MPs. Also I am running out of space on the server and need to delete some files,  big task which I have only just begun. Below is a link from the Dairy of a Benefits scrounger which you may find helpful for contacting your MP. If you possibly can please do click this link and take action, it is only a matter of filling in a form http://diaryofabenefitscrounger.blogspot.com/ January 31st I know its rather last minute but please take action to ask Air France to cancel a shipment of monkeys from Africa to the USA where they will be used in cruel experiments. You need to act now as the shipment takes place tomorrow Wednesday 1st February Here is some some information: http://www.peta.org/features/imprisoned-and-poisoned.aspx?PageIndex=2#comments You can take action by either clicking the link below to send an email http://action.peta.org.uk/ea-action/action?ea.client.id=5&ea.campaign.id=13459 or e-mail the same message to these addresses. Please send an e-mail to the following Air France officials now and urge them to cancel this shipment and join the growing number of airlines who refuse to ship primates for use in invasive experiments: Jean-Cyril Spinetta jcspinetta@airfrance.fr Jan Krems jan.krems@klmcargo.com   I did all three You can rewrite the e-mail supplied in the first link in your own words, but if you do not feel you can do this send it as it is . Please do your best what will happen to these poor creatures is just  so shocking Victory!!!!!!! I have received the following e-mail this morning February 1st: Dear Christine,  Immediately after we learned that Air France was planning to transport 60 live monkeys from Bioculture's facility in Africa to Shin Nippon Biomedical Laboratories, a notorious testing laboratory, PETA and several of our international affiliates quickly mobilized our members and supporters to take action. Within 24 hours, supporters like you managed to generate tens of thousands of e-mails, thousands of Facebook posts and tweets on Air France's public sites, and hundreds of phone calls to the airline's cargo offices. Our unequivocal voice in behalf of animals was heard loud and clear. We are excited to announce that Air France has now confirmed that this shipment has been canceled! As part of PETA's ongoing efforts to encourage the airline industry to refuse to transport primates destined for cruel experiments, PETA is now urging Air France to join many other leading airlines in enacting a formal policy prohibiting all future shipments of primates to laboratories. You can help these efforts by clicking here and taking action. This victory couldn't have been possible without your help. Thank you. And my personal thanks to anyone who signed and wrote e-mails If you now feel motivated by this success please click the link above to take  further action