Friday 13 January 2012

Radio 5Live would like to hear from us.. #spartacusreport

Are you affected by changes to DLA benefits? Has your application been turned down? Maybe you just have strong opinions about how the changes will affect you and your family. BBC 5 Live would love to hear from you.

Please contact for more information

Day 5 #spartacusreport

What an amazing week for sick and disabled campaigners! Sue and I are so incredibly proud of everyone. We've lobbied, researched, tweeted, blogged and campaigned despite how very poorly many of us are.  Through provocation and disappointment about media coverage people have remained calm, considered, rational and constructive, which is so important as we are finally breaking through to the mainstream media and that is because we have facts, reason and morality on our side. When the best justification the government can dredge up to cut benefit eligibility to the most vulnerable, those disabled during childhood, is that some of them might at some point inherit some money it is clear how dubious these 'reforms' are both morally and politically. We are British, our sense of fair play is hardwired into our national identity; the justifiable outrage people feel about benefit fraud will pale in comparison with the outrage ordinary, decent people will feel about the most vulnerable in society being targeted and bullied by a government who have already committed to overturn the considered judgement of the Lords by using antiquated laws.

This week we have been able to demonstrate to the wider public something we all knew. That we are not ranting for the sake of it, but that we have detailed evidence and clear alternatives to the government's proposals. Sue's appearance on Newsnight last night shows that the media are finally starting to understand that, and see us as a credible, powerful community.

We know how exhausted you all are, we are too. We know how much pain you are all in as we share that pain. We share your frustration and your fears. Just yesterday our community had to support someone through the terror of receiving their Work Capability Assesment notice, to comfort, to console them and desperately try and persuade them not to end their life. We take all such pleas very seriously as there have already been multiple suicides associated with benefit loss.

As long as we remember we are a community we can all get through this. We must support each other, agree to disagree where necessary and never forget we are fighting for a shared aim. We owe this debt to those disabled people who lived and died in institutions, abused, hidden and ignored. We owe it to those disabled people who found the courage to rise up, to protest against the conditions they were forced into, many of whom never saw freedom but fought to protect those younger than themselves from imprisonment. We owe it to those who's mantra was "Nothing About Us Without Us". We owe this debt to all of our community who are still institutionalised, still in 2012 being horrifically abused by those supposed to 'care' for them and to the public who's taxes foot the bill for that abuse. We owe this debt to ourselves, to ensure we do not have to return to institutional living, to being condemned, hidden away and ignored because we are 'stock' 'too expensive to sustain'.

We must continue to keep up the pressure lobbying the Lords for next week's DLA votes, contacting MP's in preparation for when the Welfare Reform Bill returns to the Commons, and sharing our stories with the public so they understand that we are them. We are their daughters and sons, sisters, brothers, husbands and wives. We are all Spartacus. Together we have taken on the leader of the Labour party and last night Sue was fantastic debating with Chris Grayling on Newsnight. As Spartacus we can continue our fight.

So long as we remember "Alone we whisper. Together we shout" then we can and will win.

With love to you all, from Kaliya and Sue

Tuesday 10 January 2012

Message from Kaliya and Sue #spartacusreport

Link to Responsible Reform Report

#SpartacusReport 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

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

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 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
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.

Monday 9 January 2012

Writers Val McDermid & Kate Long support need consult disabled ppl #spartacusreport

"How we treat our vulnerable citizens is a measure of a civilised society. The way to do that is not to make high-handed decisions on their behalf but to consult directly with them about their needs and how those needs can be met. It's surely not too much to ask of a government that constantly tells us we're all in this together."
Val McDermid, best selling crime writer

"We are not talking here about providing “luxuries”, or catering to a “lifestyle choice”. People with disabilities are simply asking for their essential needs to be met, a right most non-disabled folk take for granted. Frankly it appals me that this issue is even up for debate. What has happened to our society?"
Kate Long, author

Julie Hesmondhalgh (Hayley, Coronation Street) on #spartacusreport

"This thorough and rigorous report based on proper consultation with the people who will be, in many cases, shockingly affected by the government's proposed changes to DLA and the introduction of PIP, should be right at the heart of any welfare reform.  The government's proposals are rash, short-sighted, inhumane and ultimately expensive.  The new system is already causing much stress and anxiety to so many people who are frankly dealing with enough." 

Julie Hesmondhalgh, actress, Coronation Street

#spartacusreport supported across political spectrum, Christine Hamilton's views

"Most of us are lucky enough to take the basic functions of mind and body for granted, give or take the creaking of age.  But, equally, many of us know someone who is not so fortunate, either within the family or as a friend, or even a friend of a friend.
To enable the most vulnerable people in our society to reach their full potential, we, as a community, must give them the support they need.  Changes will always need to be made to adapt to different circumstances, but we must never lose sight of the fact that those who will be affected by any change (or their immediate carers) must be consulted at every stage"

Boris Johnson quote from #spartacusreport

"The government proposes imposing penalties if disabled people do not inform the government in changes in their circumstances. However, the Department of Work and Pensions statistics give the overall fraud rate for Disability Living Allowance as being less than 0.5%. For those with fluctuating conditions asking them to report every change to their condition would prove very stressful."

Who's Backing #spartacusreport issues? The doctors...

"The NHS Consultants’ Association believes that ill thought out reform to the DLA, with reduction of financial support to some of the most vulnerable members of society is not only unjustified, but also a false economy which will result in cost implications for carers and additional use of NHS services and resources."
Clive Peedell, on behalf of NHS Consultants’ Association
"It is important that in the quest to support employment in everyone, abled or disabled, that we do not underestimate the problems that many people with long term disabilities have in  carrying out even simple day to day functions. Insensitive assessment of disability and failure to understand the complexity of their problems might inadvertently result in removal of their benefits, causing more problems in an already vulnerable population."
Clare Gerada, Chair of Royal College of GP's

Who's backing the #spartacusreport ? First up...the doctors

"The NHS Consultants’ Association believes that ill thought out reform to the DLA, with reduction of financial support to some of the most vulnerable members of society is not only unjustified, but also a false economy which will result in cost implications for carers and additional use of NHS services and resources."

Clive Peedell, on behalf of NHS Consultants’ Association

"It is important that in the quest to support employment in everyone, abled or disabled, that we do not underestimate the problems that many people with long term disabilities have in  carrying out even simple day to day functions. Insensitive assessment of disability and failure to understand the complexity of their problems might inadvertently result in removal of their benefits, causing more problems in an already vulnerable population."

Clare Gerada, Chair of Royal College of GP's

Ally McErlaine, guitarist, Texas on #spartacusreport

"I am all for supporting the disabled in society, they are THE most deserving of financial support, having spent some time in a wheelchair myself after my aneurysm 2 years ago I do understand how difficult this is to live with. If we are to be civilised then look after the disabled and old folks too."
Ally McErlaine, guitarist, Texas

Responsible Reform? #spartacusreport

Timed to coincide with the return of the Welfare Reform Bill to the House of Lords, today sees the formal launch of the report 'Responsible Reform'. Written, researched, funded and produced by sick and disabled people, our friends and family, Responsible Reform is a detailed investigation into the government's consultation on DLA reform which ended in February 2011. 

The population affected by and contributing to the consultation were always suspicious that the government were not playing by the rules. Once a consultation has been started, regardless of whether there is a duty to consult, there are clear legal duties; particularly that there must be sufficient time allocated to complete that consulation. Examples from case law show that when disabled people are involved in any consultation, reasonable adjustments apply, ie a longer time for the consultation may be needed or access to accessible format information, something which many disabled people's organisations reported as being impossible to obtain in time for the consultation, despite repeated requests. Despite an established legal guidance on consultations, the consultation into DLA was two weeks shorter than it should have been, and ran across the christmas and new year period, which would typically merit an extension to the time, even if it were not aimed at a population usually given additional time to complete tasks due to the nature of their health conditions. Eventually the consultation into DLA was closed two days after the Welfare Reform Bill returned to the Commons, meaning that there was no way the results of the consultation could be properly considered as part of the bill.

Despite this and another potential legal challenges to the WRB highlighted in Responsible Reform, the DWP will tell people that they 'are listening to and working with disabled people' because their most recent impact assessment into the proposed replacement of Disability Living Allowance, Personal Independence Payment, published in October 2011 is 'significantly different' from the consultation. Although there are some very minor changes, in essence the latest impact assessment is identical to the original consultation report, with cherry picked, misrepresented responses. Whilst it is shameful that the DWP have misled the public and potentially parliament with their original consultation response, refusing to publish the full responses meaning that the report authors had to use Freedom of Information requests to obtain them, it is unconscionable to continue with this attempt to misrepresent the views of sick and disabled people and the charities which work on our behalf after the evidence proving this deception has been revealed.

Back in September 2010 The Financial Times ran an article describing cuts to disability benefits as "the easiest bit of welfare reform to sell". The arrogant assumptions behind that statement are that sick and disabled people are a minority group without any powerful support, something which in their desperation to accuse sick and disabled people of being scroungers, politicians of all parties have failed to think through.  A faulty and deceptive consultation combined with overwhelming opposition to the new Personal Independence Payment, make it obvious that neither the DWP or government have changed their assumption that sick and disabled people are fraudulent scroungers to be sacrificied upon an altar of 'austerity cuts'. Far from saving money, it is clear throughout Responsible Reform that sick and disabled people are deeply concerned that introducing PIP will not save, but rather cost vast sums of money, when any practical savings which could be made to the DLA budget could be done without requiring a new, unwanted benefit.

Much of the WRB is predicated on the assumption that sick and disabled people are workshy scroungers who need to be forced into the workplace. There are no workable proposals to alter working practices to fit with the demands of sickness and disability, no incentives for employers to make it more affordable and attractive to employ sick or disabled people, just ever increasing conditionality and sanctions to cure us of the scrounging nature we so clearly inherit with our medical conditions. Although Responsible Reform exposes the deceptive and dishonest nature of the government and DWP's actions, it also shows something of equal significance. The author's of the report variously have severe illnesses or disabilities; Crohns, Ehlers Danlos Syndrome, Friedrick's Ataxia, Lupus, kidney dialysis, ME, autism, and mental health issues which have removed us from, or prevented access to the traditional workplace. Sick and disabled people are a vast, untapped resource of talent, skills, experience and desire to contribute to society. Working together, using technology and working practices to fit with the reality of our day to day lives, sick and disabled people have proved our potential for employment, if only there was a potentail for that employment to work in a way our bodies and minds allow us to do.

Sunday 8 January 2012

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, has 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 were 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."