World Holocaust Memorial Day - Black Triangle

First they came for the communists,
and I didn't speak out because I wasn't a communist.

Then they came for the trade unionists,
and I didn't speak out because I wasn't a trade unionist.

Then they came for the Jews,
and I didn't speak out because I wasn't a Jew.

Then they came for the Catholics,
and I didn't speak out because I was Protestant.

Then they came for me
and there was no one left to speak out for me.

Most of us are familiar with the words of Pastor Neimoller, but we are much less familiar with the true origins of the holocaust. The first victims of the Nazi holocaust were the 'anti-socials', mostly disabled people, those with mental health problems and learning disabilities. Marked with a black triangle, labelled as 'useless eaters' and an economic drain, the Nazi's learnt how to exterminate other human beings by experimenting on these vulnerable people with Zyklon B gas, techniques that would later be refined in order to commit the mass murder of millions of people. Rabbi Debbie Young-Somers of the West London Synagogue has blogged the powerful and moving speech of one of her congregants, Dani Neumann to explain how and why the extermination of disabled people sowed the seeds of the later mass genoicide of Jews, homosexuals, gypsies, communists and other 'undesirable' groups.

To mark World Holocaust Memorial day please remember....

"First they came for the disabled people

and I did not speak out because I wasn't disabled...."

Hallucinating 'Through The Round Window' .....

How surreal have things become when Nigel Lawson, Geoffrey Howe and Leon Brittain, stalwart Conservative figures from the 80's, are voting against the more brutal elements of a so called 'compassionate conservative' government in 2012?

The distasteful truth is that neither proposals for PIP would have passed, nor would the social fund have been abolished without the Liberal Democrats who voted overwhelmingly with the government.*

When you have a bastion of all our childhoods not even bothering to turn up to vote on whether to keep National Insurance entitlement for profoundly disabled children and staunch conservative figures opposing other issues in their own government's Welfare Reform Bill we must ask ourselves what kind of opiate induced haze has led us to believe this is happening?

 

Are we hallucinating, is it a result of our exhausted, fevered brains or did Floella Benjamin from Playschool really vote more cruelly than Leon Brittain? I think we need more sleep because currently the idea that the 70's equivalent of Mr Tumbles didn't even bother to turn up to vote to keep benefit entitlement for disabled children is not one our brains can cope with.

From the sickbeds of Kaliya and Sue 


*Amendment 50e (calling for pause to trial PIP properly) Lib Dem's for 2, against 65
Social fund Amendment 62bja (ring fencing social fund) Lib Dem 1 for, 67 against

Private Eye Report On #SpartacusReport

Private Eye article about Keith Tilbury, ESA, WCA, Atos, Unum and the Spartacus Report. The image was sent to me as a jpeg (I think!) which I'm aware isn't accessible via screen reader. Lack of spoons means I can't sort this out but if anyone can help out so that it's properly accessible that would be fantastic thank you!

Updated 1721, text with thanks to Steve Budden

FIT-FOR-WORK TESTS

in the Eye's growing post-bag of appalling decisions made by French service company Atos in assessing sick and disabled people as being "fit for work", one of the most shocking concerns Keith Tilbury. Mr Tilbury (pictured) spent 13 days in a coma fighting for his life after he was accidentally shot in the stomach by a police firearms officer. The bullet smashed a rib, damaged his sternum and put a hole in his liver. He had to have part of a kidney removed and lost part of his bowel. He had massive entry and exit wounds, muscle and other extensive soft tissue damage.

Since that disaster in 2007, Mr Tilbury has suffered two heart attacks, two while undergoing surgery, a quadruple coronary bypass, two transient ischemic attacks (mini-strokes), one full-blown stroke resulting in reduced vision in his eyes, post-operative complications — and post-traumatic stress disorder.

Mr Tilbury, 60, says: "I have had many hours of cognitive behaviour therapy with a psychotherapist trying to work out why a Thames Valley Police firearms instructor would fire Dirty Harry's weapon of choice — a .44 magnum — in a seminar room."

Given his well-documented health records, Mr Tilbury, who had been a civilian emergency call centre operator, is trying to establish how on earth the Atos nurse or doctor — he is not sure which ¬could decide that he is fit to work without "dropping down dead" when there has been no improvement in his health since his last assessment. Like thousands of others, Mr Tilbury is having to go through the ordeal of appealing against the decision. He sees the box-ticking Atos test — drawn up with the help of the US insurance giant Unum, which was fined millions in the US for cheating its clients — as no more than a govermment tool to slash the benefits of people who through no fault of their own can no longer work.

Unum has been helping both Tory and Labour governments with so-called welfare reform, going right back to Peter Lilley's 1994 social security "Incapacity for Work" shake-up.

Atos, which boasts that its contract with the current govemment is worth

1 "approximately £100m a year", happened to a be the only other private company sitting alongside Unum on the then Labour government's panel which reviewed and came up with the hated "work capability test" which is now failing Mr Tilbury and thousands like him.

Companies like Atos and Unum (which markets its insurance on the back of welfare reform) now stand to make even more millions, however, as the coalition presses ahead with its plans for similar assessments for those receiving disability living allowance (DLA). By replacing DLA with a personal independence payment which is subject to regular review and face-to-face assessments, the government says it can save £1bn because it claims many people no longer require the support.

But a recent detailed study, Responsible Reform, accuses the govemment of consistently using inaccurate figures to exaggerate the rise in DLA claimants, while concealing the overwhelming opposition to its latest reform. The detailed 40-page study — dubbed the Spartacus report and written and funded by disabled people — found that the number of working-age people receiving DLA, excluding those with mental health conditions, had remained remarkably stable. One of the authors, Kaliya Franklin, said: "Cutting spending on DLA will increase the burden on local authorities, the NHS and community services at the very time they are seeking to find savings by reducing eligibility, particularly for social care support."

There is no point in subjecting people with permanent disability to regular assessments and those whose conditions do improve would welcome reform — and indeed assessments — if they were simplified and considered robust, fair and transparent. But as Mr Tilbury and so many like him have found, the government's work capability test, delivered by Atos, is none of those things. PS: After the shooting incident in which Mr Tilbury was injured, Thames Valley Police was fined £40,000 with £25,000 costs and the PC who fired the weapon. David Micklethwaite, £8,000 and £8000 costs, for breaching health and safety regulations.

Professor Paul Gregg at TUC Seminar 23.01.2012

Video of most of Professor Paul Gregg's speech at TUC seminar - whilst the majority of his talk has recorded we missed a little bit at the start and end when the battery went.


Volunteers needed to provide transcripts of this video and my speech so that the deaf community can access this information too. If anyone can help please organise in the comments thread?

TUC Seminar, Kaliya's speech

I also (with his permission) videoed some of Professor Paul Gregg's presentation and will upload that tomorrow. Unfortunately the battery ran out so missed some of his speech

Update 27.01.2012 Thanks to the fabulous Margo Milne we have a transcript of my speech 

TUC Seminar, Kaliya’s speech
Chair: It gives me great pleasure to present Kaliya Franklin, who is a prolific blogger and internet campaigner and now report author, representing the views of disabled people and campaigning for their rights. As Richard said we’re very sorry that her colleague Sue Marsh isn’t able to be here, but it’s great that they were both willing and able to be on the platform today, and I’m sure Kaliya will have a huge amount to tell us about her views on the government’s reforms and the incentives that are being phased in to enable or disencourage disabled people back into the workplace and into working. Thank you.

Kaliya: Thank you. I hope you’ll realise the laptop, but we wanted to record this part of the event for those disabled people who can’t be here, so that they can also participate.

I’ve been asked to talk about how the government are creating perverse incentives in the Welfare State, so, for the last 40 years or so, we’ve had what was very much a cross-party political consensus, and public consensus, about improving the lives of disabled people, that we’ve moved away from a presumption of institutional care into community living. But in the last two years, the situation has changed dramatically, and a great deal of that progress has been lost.

In a time of widespread financial austerity, most societies look for a group to demonise, and under the last few years, which started under the Labour government, and intensified when the Coalition came to power, the big demons in society have been benefit claimants, and particularly disabled people. There’s been a move towards blaming the individual for their own failings in not entering the workplace, rather than the understanding that we had some years ago, that there are barriers in society that disabled people can’t cross without significant support, that we should have as of right.

We’ve moved from a position of seeing people contributing to society in a whole variety of ways, whether that’s just from being an active part of their own community, or voluntary work, or providing employment to others, to this very determined focus on full-time paid employment as the only way that people are seen as contributing to society. But at the same time as we’ve seen that move, we’re seeing very much a tightening, a withdrawal, of the things that disabled people rely on to enable us to participate, and it’s a situation that was at best a couple of years ago bordering on crisis, and now we don’t expect it to take long until it falls apart.

One of the important things to note is the difference between what we would describe as “DDA disabled”, so Disability Discrimination Act disabled, and “DLA disabled”. Estimates vary, but there’s between 10 and 20 million people in the UK living with disabilities, long term health conditions, so that covers a whole age range, it’s young people born with disabilities or at the other end of the spectrum people who’ve developed dementia or age-related disabilities.

Disabled people and sick people particularly, we don’t tend to be the most visible members of society, most of us don’t have wheelchairs or white sticks to pinpoint us, many of us have invisible or fluctuating conditions, mental health conditions, mild learning disabilities that are not readily apparent, and one of the big things to note, particularly with the sickness side of things, is that we don’t leave the house very much. This is the first time I’ve been anywhere that isn’t my doctor’s or a hospital appointment since October. The authors of the Spartacus Report, we call it from-bed activism, because the authors of the report all worked on that from our beds or from our sofas. We weren’t able to go out and meet each other. Some of us have never actually spoken to each other in person, but we’ve been able to embrace new media and new technology, so that the disabled community and the sick community can network and link with each other to combine and share our skills in a way that even five years ago we simply wouldn’t have been able to do.

One of the first perverse incentives that’s come about is Clause 52 of the Welfare Reform Bill. Now Clause 52 removes a presumption which was there to protect young people within the welfare system, so if you were under 19, and so severely disabled when you left education that you were unable to work, you were presumed to have National Insurance Contributions, and that also applied to disabled people who became that sick or disabled under the age of 25, had they been in higher education, and it was important for many reasons, probably the most profoundly in the message it sent out to the wider public and community, that disability, by crediting in National Insurance Contributions you were considered to be equal and a participating member of society. And the Government have made a great deal of the fact that a relatively small percentage of young people will be impacted by the removal of this presumption, and that’s because the burden is very deliberately being pushed on to the family by the Government, so if you are the parent of a profoundly disabled young adult, they will no longer qualify for contributory benefit in their own right, they will only qualify if the family qualifies for means-tested benefits.

So at a time where we’ve seen that some of the very sensible recommendations about social care in the Dilnot Report haven’t been implemented, and the understanding from Dilnot that it was benefits such as contributory ESA and Disability Living Allowance that would paper over the gaps in the system between the failings of the NHS and the social care services. Now that’s going to be removed, and we’re going to see families in the situation where they may be completely unable for that disabled adult to remain at home, and equally the young disabled adult is going to very much struggle to move into independent living, which should be their right, they should not have to depend on their family for everything, care, their finances, so that particular concern, and it links into the concerns that carers have, that nobody’s factored in how Carer’s Allowance will work as part of Universal Credit.

We’ve also seen some very deeply deserving decisions by local authorities covering social care in the last couple of years. What perhaps many people weren’t aware of is that social care was being rationed and withdrawn for the last five years of Labour Government. For example, I used to be entitled to a care package, and then I was reassessed, and I’m no longer entitled, so the support that had been in place to help me with the practicalities in day to day life which I needed to remain, so that I stood any chance of ever considering paid employment or part-time voluntary work, was withdrawn, making things vastly more difficult.

Now I’m probably at the higher-functioning end of more severe disability. But what we’re seeing are decisions like one by, I think it was Kensington and Chelsea Council, in the case of Elaine MacDonald, where the local authority had deemed that it’s perfectly acceptable to remove night care from someone who’s not incontinent, and replace that care with incontinence pads that this person would be left in every night, because that covered, from the local authority’s viewpoint, social care provision. We’ve also seen a gentleman in Birmingham, where their local authority tried to reband all the criterias of care, and they wanted to create a new category, called super-critical, for which they would only provide care to people in that. And to give that some sort of context, we’re talking about people who, it’s not safe for them to be left alone, they may choke, they can’t feed themselves, they can’t necessarily swallow properly, they can’t clean up their own waste products, so as a society, what we’re saying is we don’t have enough money so we’re going to leave you lying in your own urine.

One of the things that the government said was a perverse incentive and justified as a reason to halve the Disabled Children’s Tax Credit eligibility was that they said it was perverse that children got more than adults, because once they’re adults, they won’t get it, so let’s take it off them while they’re still children. Now, the Government likes to talk a lot about what’s fair to the public, and what’s fair to the taxpayer, but they’re not very keen to talk about practical impacts of these decisions which the vast majority of the British public will not deem to be acceptable.

Moving on to the decision to get rid of Disability Living Allowance, and replacing it with a new benefit called Personal Independence Payment. The Government tried very hard to sell that, as a justification for the numbers of fraudulent claimants, and have been deeply misleading at many points, particularly over the consultation that they had for disabled people, which was why we felt we had to produce the report Responsible Reform, the Spartacus Report, because the Government very clearly cherry-picked the responses that they wanted, and refused to issue, refused to publish, all the responses, so that we had to use Freedom Of Information Act requests to get them, and although we have requested all the individual responses, we expect that the Government will refuse to provide them, because they are going to say that they can’t analyse them for data protection purposes, and it wouldn’t be cost effective to do so. So they’ve tried to say that the consultation report that we produced was misleading because we only looked at 10%, but what we actually looked at was the group responses, from all the different organisations, the charities, the DPOs, so the 500 responses we were allowed to see actually represented huge numbers of disabled people, because for example one of those responses would have been from Scope, who consulted hundreds of thousands of people.

So the House of Lords have voted that DLA is going to go, and the Government have had to come out and admit that this means that half a million genuinely disabled people, with no suggestion that they’re fraudulent, will lose access to this benefit. Now as we know from Dilnot and from lived experiences of disabled people, DLA is the only thing that is papering over the cracks in the system in any way. For people like me, who’ve had their social care support withdrawn, without the money from Disability Living Allowance I can’t buy in the kind of things that I need to replace that support. The Government have made a great deal about how society should replace that provision. I’m possibly the only person in the country who lives in a community that is a Big Society community. My neighbours take it in turns to bring meals in, they’ll come in if I’m having a bad day and make drinks, or clean the kitchen, but it’s not a sufficient replacement for a social care package to enable me to participate in the wider world or employment, but what it does do, in combination with DLA, is stop me from slipping back further and ending up in a much more critical category, so that the local authority would have no choice but to provide an expensive support package. But if I’m reassessed as not being entitled to Personal Independence Payment, once the impact of the reduction to the 30% average rent to Housing Benefit comes in, I will no longer be able to afford to live where I do, I’ll have no choice but to go to the local authority, and they will have to rehouse me and provide a care package that currently the cost of DLA means they’re getting away with not having to do.

It’s also really important to note that amongst the disabled community the people who are in work are heavily reliant on Disability Living Allowance to meet the extra costs of their disability. Now, we’ve already seen that Access To Work, the criteria for entitlement for equipment that an employer will have to provide is being reduced, rules are being changed so that people are having to respond to reassessments for Access to Work in an amount of time that they simply aren’t capable of dealing with, and there have even been farcical decisions like Jhaspal Dhani, who was told that he was in a senior position at his organisation, so even though it was a DPO that didn’t have any significant funding, they should be made to bear the cost.

Going on to time-limiting of contributory ESA, had the Government actually thought this through and set a means-testing limit for time-limiting that benefit at £26,000, so it was the same as the means-testing cut-off throughout the Welfare Reform Bill, then there might not have been such a strong opposition to it. But means-testing all of this stops at seven and a half thousand pounds, so if you are employed as a full-time shelf-stacker on minimum wage, and your partner has multiple sclerosis or motor neurone disease and is not fit to work and is entirely dependent on you, after one year, regardless of whether their condition improves or not, their contributory ESA will be removed, and this is perhaps one of the most perverse incentives in the Welfare Reform Bill, because the consequences are that either the working partner will have no choice but to drop out of work and the entire family will rely on the benefit system to keep going, or what we’ll see increasingly is families splitting up and being forced to live apart, increasing more welfare dependency.

At the same time as the welfare situation, what we’re seeing is perverse increases in NHS waiting times. There’s already a problem with lack of equipment provision. For example, I have some mobility, so I’m not entitled to a power wheelchair, probably because I’m stubborn, and I insist on the right to retain my mobility within my own home. But without a power wheelchair, and without access to a care package and PA, it prevents me from being able to access the world in a reasonable way, let alone whether I could access employment.

We’ve also seen deeply concerning change in the media coverage of disability and benefits entitlement. This was looked at recently by the Glasgow Media Group, and there’s also been a 75% increase in hate crime targeted at disabled people in the last 12 months. And as disabled campaigners, a lot of the anecdotal reports we receive is that the abuse people hear has altered, so whereas a year ago they might have been an effing spaz when they were screamed at in the street, now they’re an effing benefit scrounging spaz. So we feel that this is very clearly linked to the coverage. We’re also seeing a push to legalise euthanasia at a time when support of welfare is being withdrawn, which means that whatever your beliefs about the rights and wrongs of voluntary euthanasia, people will be forced down that road because they cannot get the financial and practical support that they need.

So essentially what we’re seeing is the perfect storm, which threatens to undo all the progress of the past 40 years. As disabled people, we feel that we’re in a closed pit, where the walls are closing in on us. Everything we rely on for support, and to participate in society, is being made harder and harder to access, at the same time that the conditions pushing us into a model of full-time paid work are becoming more and more punitive. And if we continue down that road, then although it sounds like hyperbole, we expect to see many more deaths linked to these cuts and welfare reform, a vast increase compared to the number there have been already, because disabled and sick people will see that they have no alternative and feel that life is no longer worth living.

Chair: Thank you very much indeed Kaliya for an extremely comprehensive assessment of the possible effect of the Government’s welfare reforms and for sharing very honestly your own experiences and those of other people as well, I think that’s something, it’s all very important to be reminded when we look at the statistics of the individuals that are behind every single one of them.

TUC Seminar on Monday. Free to attend #spartacusreport

 After three months I'm finally leaving the flat to go somewhere other than my GP's or physio....so a trip to London could be a tad ambitious even with a PA. But assuming no-one shuts me in a tradesman's cupboard, or makes me use a pallet lift as 'access' I'll be speaking (ok, croaking) at the TUC seminar on monday afternoon. It's free to attend so anyone can come along, but you do need to register in advance if you're attending. Hope to see some of you there!

 

 

A positive agenda for disability and employment

Date Mon, 23 Jan 2012

Time to from 14:00 to 16:00

Location Congress House

Cost Free

Description
Disability benefits are in the headlines - cutting benefits for disabled children, making people undergoing chemotherapy prove they aren't 'fit for work', time-limiting benefits for hundreds of thousands of disabled people. Disabled people are getting angry, but the Government has yet to take notice.

The seminar will be chaired by Nicola Smith, Head of the Economic and Social Affairs Department at the TUC; speakers include -
- Prof Paul Gregg, author of Realising Potential, the 2008 report on conditionality and support in the benefits system.
- Benefit expert (and adviser to the last Government) Declan Gaffney.
- Leading bloggers Sue Marsh ('Diary of a Benefit Scrounger') and Kaliya Franklin ('Bendy Girl').
- TUC economist Richard Exell, former member of the Disability Rights Commission.

This seminar is free, but seats will be reserved on a first-come - first-served basis, so please book a place in advance, at:http://disbilityandemployment.eventbrite.co.uk or register below.

Agenda
2.00 Chair's welcome: Nicola Smith
2.10 Paul Gregg: 'Incapacity benefit reform under Labour and the coalition'
2.30 Sue Marsh & Kaliya Franklin: 'Perverse incentives and how the government is creating them in the name of reform'
2.45 Declan Gaffney: 'Disability and employment: time for a new realism'
3.00 Richard Exell: 'A Social Model of Incapacity'
3.10 Q+A to a panel of the speakers
3.55 Chair's concluding remarks
4.00 Close
Briefing document (300 words) issued 19 Dec 2011

Travel Tube: Tottenham Court Road http://www.congresscentre.co.uk/location.asp

Accessibility Congress House is accessible. More details: http://www.congresscentre.co.uk/facilities_disabled.asp

Contact for more information
Please visit the link below to register

http://disbilityandemployment.eventbrite.co.uk/

Radio 5 Live interview - Maria Miller, Kaliya Franklin, Louise Bolotin & Jane Young #spartacusreport

So How Am I? By Sue Marsh #spartacusreport

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 borrowenergy, 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.

This is the reality of sick and disabled people fighting back. I can put it in very stark, unemotional terms, but that is what it takes. There is no doubt at all that some of us did this knowing that our lives were at risk. What on earth is happening in 2012 when sick and disabled people will go to such lengths to be heard???

Yet most of our media sit comfortably in their glass and chrome towers, desperate to be convinced that we are just a few snatching, greedy, shirkers. All we want is to "protect our special interest group" or "not take our share of the pain" You could see the irritation last week when they were forced  to report that all may not be well with the welfare reform bill. Most took the government line. "But Sue, you must agree that DLA needs reform?" When I knew they didn't have the first idea why it might - hadn't read the research, hadn't done their job.

They ignored the coalition we built, they ignored every major charity backing the Responsible Reform report and issuing press releases and statements in support. They ignored the rush of Blairites to confirm that actually, some very bad things are happening. Not one did a serious piece on our research. Not one. they all wanted "stories" - the soldier with his leg blown off refused benefits, or the cancer patient who dies just hours after being found fit for work.

We wouldn't give them. We refused. Because that's not what the Spartacus Report was about. There were at least 5 serious news stories in it, and if that wasn't enough misery-porn for them, then our story will just have to wait.

I'm "in the best place" - antibiotics and saline drips and painkillers are oozing into my blood. Everyone is very kind. The nurse who admitted me knew who I was and actually grabbed my wrist to check my name - "Are you Sue Marsh??? You??"

I have no idea if we will be able to do what we did again. We knew it was unsafe. At some point, we need the more able to take some of the load. We need them to see what is being done in their name. We need them to act. Because we can only act for so long.

Clause 80 - AMENDMENT 50e #spartacusreport

On Friday, I went to the House of Lords.

(For a second may I digress? It was utterly beautiful. For a big fan of history, a politics geek and art lover, it was almost too much stimulation at once. I sat on a bench!! Hopefully archaic looking guards with big swords aren't on their way to cut off my head for that?)

Anyway, back to terribly grown up, sensible stuff.

I went to meet "The Amendment Lords" (7 yr old asked if they were Jedis and what colour light sabres they had.)

With a clutch of emails of support from charities and groups and of course, every one of you there with me in spirit, I explained why we felt there had to be a pause to PIP.

-I explained how worried we were that legislation would pass with so few details decided. I said we had lost trust in politicians to act with transparency - and even integrity. Leaving so much in their hands to decide under secondary legislation, later, means we don't actually know how the law they are passing will affect our lives. Or the lives of our carers. 

-They asked me what the single biggest concern was. I hope you agree that I suggested it was fear over another ESA style mess. I argued that unless assessments were designed by disabled people and took all medical evidence into account, they would just add to the disaster we already face with WCAs (the assessments used to decide Employment and Support Allowance)

I suggested that in any case, the ESA assessment process was already creaking under the strain of the sheer numbers of people the DWP want assessed. In my opinion, the DWP would find it impossible to train enough extra people to assess 3.2 million DLA claimants anyway. I suggested a paper assessment as a first stage, and only once all medical and social evidence had been considered should an assessor decide whether or not to conduct a face to face assessment. 

Most importantly, I begged them not to roll this out until we could make sure we had a policy that would work. 

ESA is a three year experiment using real people as guinea pigs. The DWP admitted there were serious problems with it, yet maintained it was better to modify the ongoing process rather than pause it while they got it right. That means that every day, for three years, vulnerable people have been let down, denied support they need and been forced through stressful appeals. While we wait for Harrington to decide our futures, every day, people are suffering. 

We can't let that happen again. 

***********

This morning, the following amendment has been tabled :

Clause 80 - Amendment 50E

BARONESS GREY-THOMPSON
BARONESS WILKINS
LORD LOW OF DALSTON
BARONESS CAMPBELL OF SURBITON

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.

We have just 7 hours to make sure that as many peers know about it as possible. To show them that it has a coalition of support difficult to ignore. Charities, politicians and journalists are all ready with statements and letters and articles. TV interviews are lined up all day. We have done all we possibly can to make sure that if the Lords decided to table an amendment expressing our concerns, we would be able to tell peers about it. 

The reform of DLA will cost £675 million. Half a million disabled people will lose support. We have made a very strong case in our report, Responsible Reform, arguing that ill conceived reform will simply end up costing the taxpayer hundreds of millions more in costly appeals and further strain on NHS and social care budgets. 

Please, write emails, tweet, contact journalists, blog, plead and persuade. Use evidence, tell them how it will affect you, urge peers to attend the debate and vote for amendment 50E. 

We MUST get this right. Lives and futures depend on it. The lives of those very same "vulnerable" people the Government have pledged so publicly to protect and support. 

We are just asking for reform to be safe. At the very least, surely that is not too much to ask?

Lord Freud's Letter to Peers re #spartacusreport & 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.

As the previous consultation took no account whatever of the opinions of sick and disabled respondents, we have no reason to believe that future ones will be any more transparent. We remain very concerned that legislations will be passed without these "detailed requirements" and call for a pause to PIP until it is clear exactly how it will affects us. 

Responsible Reform further suggests that we did not take into account responses we received to that first consultation. I completely reject this. Can I make it clear; this report has only considered 10% of the responses we received and only those from organisations. All consultation responses, over 5,000 individual submissions, have been thoroughly and appropriately considered in the Government's analysis and have been used to inform the design of the new benefit and supporting processes.  


The Government received 5,500 responses to the consultation. Of these :
• 500 were from groups representing millions of sick and disabled people throughout the UK. 
• 2,500 were template letters. We reject the idea that people sent template letters to the Government just to congratulate them and argue that these will almost certainly show some concern over the proposals in 100% of cases. 
• Given the overwhelming opposition to the plans for PIP expressed by the 523 groups who responded (national charities, local authorities, local charities and disabled people's organisations) representing millions of disabled members, it would be remarkable if the 2,500 individual responses were entirely in support. However, we have put in a further FOI request for all 5,000 of the remaining responses - information that we would anyway, expect Lord Freud to make public in support of Lord Freud's claim that "All consultation responses, over 5,000 individual submissions, have been thoroughly and appropriately considered in the Government's analysis and have been used to inform the design of the new benefit and supporting processes."

The reform process for DLA/PIP remains open, consultative and with a real focus on co-production at all key stages. We have worked with disabled people and disability organisations and continue to do so; my Ministerial colleagues, Departmental officials, and I meet with them on a regular basis. We consulted informally with disabled people and disability organisations in advance of the formal public consultation, and we have developed the assessment process for the new benefit with an independent group of specialists in health, social care and disability, as well as some disabled people.  

"Meeting" does not confirm co-operation or engagement. In our experience, disabled people and their organisations are increasingly frustrated that their opinions are ignored. In particular, whilst some form of assessment is supported, we can find no support at all for the ESA-style assessment proposed by the Government.

This has not been a passive relationship. The comments, input, advice and guidance has led to changes to both the assessment criteria and the overall policy, most notably that we will not remove the mobility component of both DLA and Personal Independence Payment in residential care homes. 

An enormous coalition of disabled people their organisations and major charities are saying that they DO feel this has been a passive process. There are many, many elements of the welfare reform bill that we are all warning will cause real hardship. Removing the mobility component of DLA from those in residential care homes is just one proposal that would have been unworkable and discriminatory. There are many more and the Government have refused to consider alternative proposals. The assessment criteria remain a cause for deep concern across the disabled community and are still far from workable.  

The Department has also established the Personal Independence Payment Implementation Development Group, which meets regularly and involves over 50 organisations of and for disabled people. This dialogue is crucial as we design and develop delivery arrangements. The Department has also adopted the principles of user-centred design for Personal Independence Payment that places customers at the heart of the design process to ensure their needs are reflected in the way policies are delivered.  

This response does not address any of the serious concerns raised by the Responsible Reform report. (Spartacus Report) That this letter fails to comment on the use of misleading statistics to justify reform, fails to comment on the repeated warnings that proposals for PIP may breach international and UK equality laws, and fails to understand what is leading to the growth in DLA caseloads is of great concern. They still do not explain where or how they decided to cut 20% from the DLA budget or look at the impact that this will have on disabled people. 

It is what Lord Freud does NOT address in this letter that we believe ought to give peers the greatest cause for concern.  

My Ministerial colleagues and I are personally committed to making Personal Independence Payment an effective, efficient benefit that targets support where it can help those facing the largest challenges in leading an independent life. It is in everybody's interest to make sure that disabled people and their representatives are involved as we design a solution that achieves those goals. I believe my Department has and is taking the right approach to achieve that, and we will continue that open dialogue as we during the implementation period and beyond.  

[signed]  

"Lord Freud"

Minister for Welfare Reform  
• Response on behalf of the Responsible Reform report by Sue Marsh and Kaliya Franklin