Every Child Matters - Guest Blog From Eilidh's Mummy

1/31/2012 12:30:00 pm BenefitScroungingScum 0 Comments

Originally posted here and reproduced with thanks

Looking Under The Lid - The BioPsychoSocial Model - guest blog by @margojmilne

1/31/2012 11:25:00 am BenefitScroungingScum 0 Comments

Like many others, I've been anxiously watching what's been going on in the House of Lords with the Welfare Reform Bill. After all, it affects my future, very directly. I couldn't help but notice Lord Freud, the WRB's sponsor in the Lords, referring to a document he'd shown to "certain" of the Lords. He was using it as the justification for the Government's change from the social model of disability to the biopsychosocial model in drawing up the Bill. I wrote a post recently about the differences between those two models.

Anyway, it seemed a bit unfair to me, if they got to see it and we didn't. With the help of Twitter, I managed to get a pdf of the document in question. It's Models of Illness and Disability, by Gordon Waddell and Mansell Aylward - both from the Centre for Psychosocial and Disability Research at Cardiff University. The Centre is funded by Unum Group, whose relationship with the DWP has long been - well let's just say "interesting". A good place to start in learning more about that is here.

Now, there's certainly a lot I disagree with in the report. But it might surprise you to learn that there are things I agree with too. There's only space here for me to point out a few of the things I found, so I'm sure you won't be surprised if I concentrate on the things I disagree with!

The report starts by describing the medical and social models, and some of the limitations of each. Unfortunately, the authors seem not to have understood the social model in the first place! They describe it as applying best to those with permanent physical impairment, learning disabilities, and severe medical conditions. In fact, many people with learning difficulties and medical conditions (as well as those with mental health conditions) have argued that the social model, with its emphasis on societal barriers rather than personal experience of impairment, fails to represent their experience of disability.

The authors also, when talking about the social model, use the term "disability" interchangeably with "impairment". The social model sees impairment as an actual physical, sensory, mental or intellectual variation from the norm, and disability as the as the exclusion that arises through society failing to respond to those variations. They are not synonymous.

Waddell and Aylward then attempt to apply the social model to mental health. They have said earlier, however, that "mild to moderate" conditions often have symptoms without objective findings, which would mean there is no impairment. It's necessary to have an impairment to be disabled.

Aylward and Waddell speak constantly about "health conditions" and "healthcare". There seems to be no recognition that many people on disability benefits have disabilities (that are not also illnesses), and have no more contact with health professionals than able-bodied members of the public

They also talk about free will and personal responsibility, and point out (and this is fair enough, in my opinion) that if sick and disabled people receive benefits, they have to fulfil their side of the bargain by deciding if it is reasonable for them to return to work.The corollary is, however, that benefit decisions must be made with "understanding and compassion".

With recent decisions from Atos including finding a man in a coma fit for work, and requiring a terminally ill man with dementia to attend a "Preparing For Work" interview, it could surely be said that the government has breached this contract.

Fairness demands that rights and responsibilities work both ways, say the authors.The onus is on society to provide the necessary opportunities and support before imposing responsibilities on sick and disabled people. Well, those opportunities and support are certainly not in place as yet.

The biopsychosocial model (which I'll refer to as the BPS model from here on in) was only ever intended to deal with about 2/3 of people on ill-health benefits, with what they refer to as "common health problems" - things like mild to moderate mental health problems, musculoskeletal problems, or cardiorespiratory problems. Waddell and Aylward argue that such problems are very different from the severe medical problems and permanent impairments for which the sickness and disability system was originally designed.

A key underpinning of the BPS model is that work is good for you, and for your health. Now, I do agree (I AGREE WITH THEM ON SOMETHING!) that being out of work is bad for your health, but it's not quite as simplistic a relationship as they suggest. Just about every illness is more common the lower down the socio-economic ladder you slide, and benefit claimants are right at the bottom footing the ladder for everyone else. People working in unskilled jobs have very slightly less risk of getting the majority of conditions than benefit claimants.

The beneficial effects of returning to the job market generally outweigh the risks, say the authors, as long as there is a realistic chance of obtaining a "good" job from the perspective of promoting health and well-being, preferably locally.

In the present economic climate, even able-bodied candidates with "clean" sickness records cannot find work.What chance do we, as sick and disabled people, have? Pretty much zero.

The authors argue that medical treatment for "common health problems" focuses on symptoms rather than treating the cause. I would reject this claim. Depression, for instance, is now treated with medications that correct biochemical imbalances in the brain.

They discuss mental health problems specifically as being BPS disorders. Severe mental illness is the minority: the majority of sickness absence for mental health issues, they say, is for mild to moderate conditions like depression and anxiety. This bit made me rather angry! Having had severe depression and anxiety in the past, I can confirm it's no walk in the park..

So. Conclusions. I'm not over-impressed by the report - it's slack in its use of language, and its understanding of the preceding models it discusses.We can also see how the Government has cherry-picked from it, used the bits that serve its ideology (working is good for your health, etc) while ignoring the bits that don't suit (benefit decisions must be made with understanding and compassion, society must provide opportunities and support before imposing responsibilities on disabled people, etc). And the BPS model was only ever supposed to apply to 2/3 of "health problems" anyway, not all. Overall then, a resounding Fail, I'd say. Must try harder.

Oh - and must stop trying to apply this nonsense to the millions of distressed, vulnerable people up and down the UK who will be affected if this blancmange of a Bill goes through.

Thanks to Margo who's excellent blog can be found here

Email Your MP To Support Lords' Amendments to #WRB

1/30/2012 09:53:00 am BenefitScroungingScum 3 Comments

As many of you will know, the Welfare Reform Bill returns to the House of Commons on Weds, Feb 1st. Ministers have assured us that they will overturn all of the modest amendments we've fought so very hard to achieve. They will do this by using the archaic and undemocratic processes of financial privilege and the Parliament Act. All we can do at this stage is appeal to the consciences of our constituency MP's. Ask them to look very carefully at the amendments and if you wish to personalise the template letter explain to your MP how you as their constituent will be affected by the WRB.

We have until wednesday to persuade those MP's who have heard our arguments for many, many months that we're not asking for the world, we're not seeking to wreck their bill, we just need the bill to be safe. We understand how exhausted everyone is, but this is vital if we are to stop all our hard work from being undone at the brush of an arrogant pen. Please take action now!

PS: Sorry for the formatting. It turns out that two spoonies, with one functioning laptop and no functioning body parts or brains find it a tad tricky to format properly!

"Because I'd rather die than go back into an institution"

1/29/2012 10:31:00 am BenefitScroungingScum 11 Comments

Yesterday saw a daring campaign led by disabled protest group Disabled People Against Cuts with support from UKuncut. Wheelchair users chained themselves together across a road blocking the link between Oxford Circus and Regent Street in central London.

Video footage is available here from ITN and this powerful, moving film made by the Guardian's John Domoko's. There wasn't a great deal of mainstream media coverage, perhaps because unlike the student protests or riots there was no violence or mess left behind, just organised 'delicate disruption'.

The protestors chained themselves together at approximately midday*, and were soon surrounded by slightly bemused looking police officers. It was heartening to see Sky News report the views of protestors, and include the statement from one gentleman that he 'wished no animosity to the police' but to explain the sweeping cuts to disability services, from social care, to the scrapping of the ILF, to welfare cuts meant his ability to live independently was at risk and that he'd "rather die than go back into an institution" This report was particularly moving because the gentleman speaking appeared to be old enough to have either lived in institutions or to have grown up with the threat of being forced to live in one.

There were no reports of arrests; the Met police appeared unsure as to how to deal with the situation, and from the coverage available online they seemed extremely reluctant to intervene further than politely requesting people to move. Watching I could only think back to a conversation with a Met police officer I had about this around a year ago, where he explained that if disabled people wanted to protest then many of the Met would want to support them. (obviously this is not a formal view of the Met police!)

However, moving 20 wheelchair using protestors would have been a problem as there were no accessible police vans to put people into, and there was a particular comedy moment when the police tried to issue instructions via loudhailer and were politely asked if they had a British Sign Language interpreter available. They did not!

At 2pm, having made their point the protestors unchained themselves and dispersed.

This protest was only in part to do with the welfare cuts. They are just one of the issues currently creating a 'perfect storm' facing disabled people. Regardless of your beliefs about the deficit and welfare cuts, this protest was particularly intended to highlight how the media representation of disabled people has changed over the past few years, that public perception of disability has altered as a result of that to be less sympathetic to the needs of disabled, sick and older people, and that in the past 12 months alone disability hate crime has risen by a horrifying 75%.

It was incredibly powerful and moving to see the disabled community coming together to protest in this way after the successes of campaigns like The Broken of Britain, Where's The Benefit and the more recent Spartacus Report. Although people did not know each other before these protests the sense of unity, community and belief that if one of us is hurt, all of us are hurt was strongly evident throughout the day.

* time corrected thanks to @sisyphusa 

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

1/26/2012 12:34:00 pm BenefitScroungingScum 5 Comments

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

Professor Paul Gregg at TUC Seminar 23.01.2012

1/25/2012 11:57:00 am BenefitScroungingScum 2 Comments

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?

Updated: Transcript below with huge thanks to Indigo Jo Blogs

Note: this was transcribed from a YouTube video which is incomplete at both start and end. A PDF is available here.

… OK, it shows the proportion of the working-age population in reliance of state-funded benefits, and you can see that the UK is very much at the lower end of the distribution. One thing I’m always ticked by in this in a sense is that, if we took out the fact that we have a maternity leave system in this country, we would have lower welfare reliance than the US. Also note in passing that we have lower reliance on disability benefits than the US, and yet at times [it’s] argued that we should be focussed on the US model as a welfare reform, with that “get tough” kind of message; in fact, we have no welfare reliance problem relative to other developed nations. We are one of the best performing, if you like, in that particular [?].

Finally, this is the picture of the proportion of the population reliant on the “big three” welfare benefits over the last 30 years or so, and I think it’s well known that the proportion of the population that is reliant on welfare is in long-term decline in the UK. It’s gone up in the recession - OK, that’s what recessions do, they push people out of work and some of those people rely on welfare. But the long-term trend, certainly relative to the mid-1990s, is for a steady decline in the proportion of the population reliant on welfare. That seems to be substantively driven by two processes. One is the improving financial rewards given to work under the previous government through tax credits, which profoundly changed the employment rate of lone parents, and the labour market was performing better in its mix, if you like - it was less focussed on certain sections of the population, it was broader in its regional reach, it was broader in its educational reach, there was less concentration of worklessness on certain sections of society, which improved the welfare picture.

Now, in that picture, you will see the one group where welfare reliance was not declining ahead of the previous recession or the current recession (depression might be the better word, actually) was that for reliance on disability-related benefits. The focus on disability-related benefits by the last government was very much late in the day. It focussed initially on the long-term unemployed, particularly youth unemployment, it pushed a lot next on lone parents, trying to push them into work; the disabled was the last group that got any serious attention in thinking about welfare reform under the previous government.

I just wanted to talk a little bit about what the dynamics were for reliance on disability benefits. It’s that the reliance on disability benefits were incredibly lagged from things that were happening in the past. OK, so this is the picture of those who had been reliant on benefits for more than two years, then five years, then ten years — this is because data’s become available more recently, so we can’t get the full historical picture. The point I want to make is that the overall picture of stability on disability benefits was masking the fact that, at the shorter durations, and at each stage that we go through it, that the decline was going on, was that reliance on disability benefits was declining in all durations except the very long-term reliance - five, ten years plus, and if it’s ten years plus, we’re talking about fifteen or twenty years. Now, this rise is a historical artefact of what was happening back in the late 1980s and early 1990s: this is a historical echo from what was happening 20-odd years ago in the welfare system, OK? And this is why, in the last recession (as in any recession), reliance on welfare increases, and even increases among the disabled population with something of a lag , and it seems fairly clear to me from the 1980s experience that what happens in the recession is that firms disproportionately push out people who are marginal to their workforce, and that includes people who are sick and disabled. There is an “exit push”, if you like, where disabled people are “managed out” of the workforce in times of recession where firms are under acute financial stress. This seems to be happening again - less marked than last time, but generally the employment picture is less marked than last time with loss of jobs, but it seems to be happening again, you can see the kick-up, this kind of pushing out of people, new claims rising as a result of the economic cycle is something that occurs; it seems to be a deliberate act of response to poor labour market conditions by firms, and that’s one of the reasons why we’ve got this long period of relatively high welfare reliance amongst people with disability benefits; they’ve been pushed out, stayed out, no way back, you get this steady build-up of people with long claims dating back, as a historical artefact, from a long time ago.

To say that slightly differently was that, if you look at it as a steady state of where it’s going, we were in a situation where reliance on disability benefits was in sustained decline, that we would have moved from something like 2.7 million to something like 2.2 million before this process of reform started and before the current recession.

Right, I view - and this is kind of my take on things - is that not only are we trying to move into a situation where we want people with disabilities and long-term health conditions to be able to work, and to be able to move back into work (and let me emphasise in passing that half the battle is trying to stop people from leaving work in the first place, and that’s really not received as much attention as it should do; if we’re really serious about holding people in work when they have disabilities and long-term illnesses, then we’ve got a major problem with the fact that people are able to be pushed out and “managed out” of the workforce in a way that doesn’t apply to some other groups). Putting that aside, if we’re trying to build a system where people are able to come back into the world of work, we’re in a situation which is radically different from JSA for the regular unemployed. We need a system where a coalition is built of support and engagement around the individual, and that refers to their personal care and support; it refers to an intermediary, acting in a sense to negotiate that process of returning to work that’s currently occupied by work programme providers (and maybe that’s going to work, maybe it isn’t, we don’t know yet), and crucially it needs the employers to be part of that process.

That employer relationship in this kind of process, in my view, needs to be negotiated by the intermediaries. Intermediaries need to be working alongside people with disability and health problems, negotiating relationships with employers to bring the match, if you like, together because it’s not going to happen organically for obvious reasons. Secondly, the match needs to be a willing match. We can’t have a situation where people are forced into jobs which are potentially damaging for their health, forced into situations where the job isn’t flexible enough for them as an individual, even if it’s flexible enough for the employer. It’s got to be built around the individual and the person who best understands the individual is, surprise, surprise, the individual. That means we can’t have compulsion to take jobs; we can’t even have compulsion, in my view, to look for jobs. This is an engagement process where people need to be supported, brought along, agreeing where they want to go, stating where they want to go, they need to lay out the vision of what they want to happen and the processes, the support services they want, including intermediaries and employers, to make this vision a reality.

That’s kind of what I was trying to articulate when I wrote about this; that this is a very different model to that used for regular unemployed people in several dimensions. The first dimension, in a sense, is that the support and engagement needs to start straight away, whereas with regular unemployed people, it starts after a period of time; and secondly, it’s got to be an entirely voluntary process where a relationship is established with an intermediary to discuss, inform, to set about the process and try to move people forward and take them into the labour market. That, as I said, involves employers.

Now the problem here at the moment, as I see it, that we are in serious danger of undermining the potential positives of that process, which is a point Kaliya [Franklin] made. What’s going on at the moment, in what I’ll call the welfare reform process, is making it, in my view, substantively harder to build that positive agenda of trying to help people move back to work. There’s two major reasons for that …

Now, I think I may have jumped ahead of myself a bit; I just want to say one more thing, I’ll come back, sorry. The use of statistics at the moment is really pissing me off. We’re getting this kind of statistic that only 7% of people being tested by the WCA are being found incapable of work. Well, the true figure is about 30% of people tested by the WCA are being found eligible for ESA after appeals (it’s about 25% before appeals) - this is new claims, not the people being re-tested - but something like 40% are never tested at all. They leave the benefit before the testing process starts, and that’s a natural process of some people on disability benefits having short-term conditions and they return to the labour market. So, something like 60% of the population being tested are being found eligible for benefits, not 7% of those tested being found incapable of work - these are profoundly different statements.

Secondly, and this is a paradox I find interesting, despite the language that all these people are somehow being caught out by the new kind of test, is the number of claims of people for ESA has barely fallen one iota, and the reason is - the new test is different from the old one, it’s pushing about 10% of people over the line that makes them ineligible for ESA related to incapacity benefits, but as I showed before, the number of claims is rising because of the recession, and this means that at the moment, we’re in a kind of stasis - the recession, which is, I think, [leading to] deliberate managing-out of sick and disabled people by employers, is offsetting the counter-force of the WCA test making pushing people over the line and making them ineligible for ESA.

Finally then, just talking about that in a little more detail, so that’s what I think is happening in terms of the WCA test, but there’s two things I think are deeply regrettable in this process. The first is, of those people being pushed across the line, we know absolutely nothing of what’s happening to them. At no stage in the process, and this is the previous government that’s at fault here, have we set up the kind of tracking mechanism to say what’s happening. Is it the case that people’s conditions are deteriorating because of the stress of not being able to get access to the welfare systems that are suitable for them? Are they moving into work? We simply don’t know. We simply also don’t know whether it’s different across different kinds of conditions, and one of the things we could easily be doing at this stage is trying to work out which part of the conditions people are presenting with, the system is failing. And yet, none of this information is being gathered, used, analysed, and I think it’s just completely unacceptable that you’re taking a group that are very vulnerable, you’re introducing a new system, you don’t properly test what is happening to people as they go through the system, you aren’t following people, and we have, in a sense, policy-making by an iterative process of reform and scream. They introduce a reform, everybody screams, they change something, everybody screams. They change something again, and each time they say “we’ve changed it, it’s fine now”, but at no stage is it actually tested to prove that things are fine. I think this is entirely the wrong group to be trying to make policies on the hoof. This is something you’ve got to work through, you’ve got to prove the concept’s working, you’ve got to materially follow people and what’s happening to them as they go through the process, and then, and only then, do you start trying to deliver that to a population that have been reliant on sickness and disability benefits for a long period of time. I also think it’s extremely strange that you’re taking a group that have been on welfare for a period of two or three years plus, and typically a lot longer, taking them out of incapacity benefit, not putting them in ESA, and really not offering them any kind of additional support or recognition within the welfare system to try and help them into work. Anybody who’s been out of work for that length of time will struggle to find work; people with health problems are only going to struggle more.

Finally, I think there are two deep contradictions in this process, where I feel we are undermining where we should like to try and go. We want a process which is engaging people, which is supporting people, carrying them through so as to make work a viable possibility for them. That requires a relationship between the intermediaries and the individual, a positive relationship, and the hostility of the reform process that’s going on and how it’s treating people is only going to cause those who get onto ESA to entrench. “I’m not going to risk anything by trying to make a positive engagement on the road back to work; it only puts what I’ve achieved at risk.” It brings the shutters down; it makes the whole engagement process almost impossible. The scream of people as they’re going through this process is only going to make the realisation of a positive agenda of moving people back into work harder. And echoing that point in a slightly different way, the process of moving people, as part of an engagement process of moving people back to work under the Work-Related Activity Group is going to take two to five years. The contributory ESA is being capped at one year.

TUC Seminar, Kaliya's speech

1/24/2012 06:45:00 pm BenefitScroungingScum 12 Comments

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.