disability | A Latent Existence

Sneaky Work Capability Assessment rules judge you fit for work based on imaginary help

January 17, 2013 By Latentexistence 19 Comments

There are new regulations for Employment Support Allowance about to come into force on the 28th of January. These regulations were proposed only six weeks before they will come into force, leaving very little time for the impact to be considered.

Worse, these regulations make drastic changes to the assumptions made during the assessment that will result in even more people being refused sickness benefits or told to take part in work-related activity.

Doc Hackenbush explains the change (Click to enlarge)

The two big changes are:

An assessor can consider what mobility aids, equipment, medical treatments or medicines might help the claimant return to work, and then, without consulting them as to whether the change is suitable, they can judge them fit for work or for work related activity based on them making that change. This completely ignores things like side-effects of medication, suitability of adaptions and mobility aids, or even if such help is available to the individual. This could already happen to some extent, such as with wheelchairs, but will now apply to a far wider range of changes. This also raises the huge problem of medical treatment without consent, since refusing to take a drug that could help a person return to work, even for very good reasons, could lead to benefits being withdrawn.

The second huge change is to how the the assessment considers the relationship between mental and physical health conditions. Where previously any disability or restriction could be applied to any activity, whether it was caused by mental problems or physical problems. These new regulations will strictly separate the two such that one set of questions considers purely physical restrictions, and another set purely mental restrictions. You may be completely unable to perform a task due to mental illness, but be considered able to physically and therefore able to full stop. This equally applies to side effects of medicines. For medicines that treat mental health conditions, only the impact of side effects ON mental health will be considered. Crippling physical side effects caused by treatment for mental health will be completely ignored when deciding that a person can work.

These changes will pull the rug from under the feet (or wheels) of hundreds of thousands more people who are struggling to live, never mind to earn a wage. Make no mistake; whatever the intention of these changes, this is a cut in support.

What you can do

The clearest analysis of these changes that I have read is from Ekklesia. Briefing on ESA Regulations [Ekklesia] I recommend that you read this.

Please write to your MP urgently to oppose these new regulations. You can find and contact your email through Write to Them. My own communication with my MP will be available on this blog later today.

Please share this and other blogs about this subject on Twitter with the hashtag #esaSOS as well as on Facebook and anywhere else you think suitable. A tweet of your own will have far more impact than a retweet.

Please also add your signature to the War On Welfare petition to call for a cumulative impact assessment of this government’s welfare reforms.

The continuing saga of my electric wheelchair

January 3, 2013 By Latentexistence 1 Comment

I have to use a wheelchair for most journeys outside of my home and car. Because I do not need one inside the home I do not qualify for any help at all from Worcestershire Wheelchair Services even though an NHS occupational therapist has agreed that I need it, and I get High Rate Mobility Allowance and a Blue Badge for parking because of my inability to walk. I use my DLA to lease a Motability car and I bought my own manual wheelchair which I can only self-propel about as far as I can walk.

My current power wheelchair

I would benefit greatly from an electric wheelchair because at the moment I require someone to push my wheelchair. With an electric wheelchair I would be able to visit places without my wife. My wife intends to go back to work and I won’t be able to go anywhere without her that requires walking more than few metres from my car. Even the medical appointments will be difficult.

After all the drama detailed in previous blog posts here, here and here I applied to a local charity that provides grants for people in and around the area including helping with mobility. They aren’t a disability charity and so they don’t have a great understanding of my problems. They seem convinced that because they have purchased mobility scooters for several people with my illness, that I should be able to get buy with a scooter too instead of an expensive electric wheelchair. My correspondence with them has dragged on for months since I first applied. When I first looked at a suitable chair to obtain a quote I asked about a second controller which would enable an attendant to operate the chair if I were too exhausted to. (This can happen after a long day.) The charity administrator immediately panicked on seeing this in the quote and demanded that I get my doctor to write a letter saying that I could safely operate a power wheelchair. This despite the fact that I drive a car! I had the second controller removed from the quote anyway when I realised that it cost about £500 extra but they still insisted. Obtaining that letter took three months, after which I was sent another letter which I detail here.

Dear Mr Sumpter

Further to your application for an electric wheelchair, we have now received confirmation from your Doctor that you are suffering from ME and would benefit from a mobility vehicle.

However the electric wheelchair you have requested has been quoted by INDY at £2410.22 [This is the price with 2nd controller] which is greatly above what trustees would normally consider for someone with your health grounds. In similar circumstances they have purchased a Aerolite Scooter in the region of £800 which easily fits into the boot of a car.

In order for Trustees to consider your request we would ask that you obtain a report from an independent Occupational Therapist as to why such a specialist chair is necessary for your condition.

I did contact my NHS Occupational Therapist but she declined to provide such a report. I have no idea where to go to pay for a report or if that is suitable so this is where it has stopped for the last two months. I have already considered and tested mobility scooters. They are unsuitable for several reasons:

My size 12 feet do not fit within the footplate of the more affordable smaller scooters and instead sit awkwardly across different levels of the scooter.
The seats on all the scooters that I have tried do not give enough support to my back, leading to pain.
Stretching my arms out to the handlebars puts pressure on my wrists leading to increased pain, and using the arm rests causes me to slouch forward, hurting my back again.
I would have to leave it outside some shops, which is no good as I cannot stand and walk for long enough to queue or browse the shelves for what I need.
I cannot take a scooter on a bus. They’re not allowed.

Squeezing onto a mobility scooter

A larger scooter would solve part of this problem including footspace and seat height, but would cost more and still hurt my arms and hands. The one I tried was also too heavy for me to lift into my car and possibly too big to fit. A proper electric wheelchair would have a good seat, proper arm support, a controller suitable for the level of pain in my hands, enough space for my feet, would be allowed in shops and other places, and could go on buses.

Since my application I have actually bought a second hand electric wheelchair for £300 but while useful on occasion it is far too bulky to go in my car and the batteries are nearly worn out and will soon require expensive replacements. If this local charity insist they will only pay for a scooter then there really is no point in my getting one. I’ll have to use my current chair until it dies for journeys on public transport and will have to have someone with me to push when I go out in my car. I’ll be writing to the charity with all of my reasons and I will also suggest to them that they purchase a slightly cheaper electric wheelchair, although finding one that is both cheap and reliable will prove tricky.

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Filed Under: Illness Tagged With: disability, mobility, powerchair, scooter, wheelchair

What’s the state of ESA?

December 24, 2012 By Sue Marsh 30 Comments

This won’t be a short post, but it is a crucially important one.

I have never written about something on this blog that I couldn’t prove to be true. If I didn’t have evidence that I could show you online, I didn’t write about it.

I’ve had many conversations with Labour MPs or peers or journalists or managing directors or trade unions that I couldn’t share, but each one added to my overall understanding of ESA (Employment Support Allowance)

Today though, I think it’s important that I try to lay out very clearly what I feel I “know” about ESA, WCAs, Atos, the DWP and the current political situation.

I’ve dismissed those I judged to be fools along the way, the way we all do every day as we decide to trust someone or not, to believe something or not. I’ve made my judgements from meeting people, from talking to them. I like to “see the whites of their eyes” when I can. I research people, I try to “know” them and what makes them tick.

I’ve judged evidence and analysis along the way and tried always to get as close to a truth I could prove as possible.

I’ve dug into the history of welfare reform where I could. I’ve tried to find out what was going on with Labour at the time, when were Atos brought in? What was Unum’s involvement, who designed ESA? Which DPOs and charities were involved?

At every stage, with every decision, every speech, every article, I’ve tried to think of the people who read my blog. I’ve tried to ask what we need to change and why. How to change it. Who are the real enemies? Why? What methods of demanding change are effective?

Of course, my judgements may not have been yours. I have absolutely no way of actually “knowing” if I was right or wrong, too naïve or too cynical, biased or balanced but the following summary is where I feel we are in my heart from everything I’ve read and everyone I’ve met.

There are so many things that so urgently need changing about ESA, forgive me if I forget any here. For every bullet point, the section in italics is my opinion on where we currently stand.

Medical evidence from own GP or consultant rarely taken into account

One of the most shocking statistics disclosed about WCAs was that DWP decision makers only refer to medical evidence as well as the Atos decisions in 2% of cases. Harrington recommended that medical evidence should always be considered and there has been progress- 8% of decisions are now overturned by DWP decision makers, suggesting they are referring to medical evidence much more. This has not yet been rolled out everywhere, so we might hope to see the figures improve further. However, the ideal solution would be for decisions to be taken by an independent doctor, based on all the evidence available.

Descriptors used to assess fitness to work are far too narrow and not based on real life. They discriminate against those with mental illness, long term chronic illness, learning difficulties and more.

No assessment can ever be fair or functional if the descriptors are wrong. ESA descriptors are so wrong, they need totally fundamental reform. I got the impression that something shifted in the early part of this year. Government suddenly decided to go ahead with a trial of alternative descriptors (you can see them here) that were much fairer and broader and more rooted in a real life test. Though far from perfect, I believe they would give much more realistic results and provide much more opportunity for HCPs to make informed decisions.

The timescales to test these new descriptors is very quick for government. They will be trialled alongside a panel of expert decision makers to see how accurate they are. This process will be run by civil servants and if they are a notable improvement on the current descriptors, government do say that they will be implemented.

We can help make sure the new descriptors are fairly trialled and the results accurately reported by keeping an eye on the trial, communicating with the charities responsible for writing the new descriptors and making sure that this isn’t somehow quietly shelved while we’re not looking. However, if all went well, we might be looking at the introduction of the new descriptors by 2014.

Disability assessment centres are not all accessible to disabled people, often with no parking (!?!)

This is something that Atos has pledged to change as soon as they can. Whether might choose to be sceptical, but they have said on their blog and elsewhere that they are committed to quickly making all centres fully accessible.

We can make sure they do this by writing to them and saying how important it is, urging them not to delay and telling them your own stories of trying to access an inaccessible centre.

The Support group is too narrow and far too difficult to get into.

Support group numbers have been steadily rising. Last year the government had to find an extra £1 billion due to paying more people than they had predicted going into the support group. The figures are still rising and suggest they will continue to rise as the Harrington changes are rolled out. Grayling has said that they are “intensely relaxed” about this rise in Support Group numbers if it means those in genuine need are getting help and certainly, there doesn’t seem to be any evidence of this rise being suppressed or restricted.

Once the latest figures are adjusted to take account of appeal decisions, around 35% will end up in the Support Group, around 42% in the WRAG and 23% fit for work. This is a huge improvement on the shocking days of new-claim only ESA stats, where just 6% were going into the support group, 18% into the WRAG and a full 77% of claims not resulting in any award of ESA.

There’s still a long way to go. I would argue that the support group should be bigger than the WRAG and that 23% is too many being found fit for work, but there really has been great improvement.

Sanctions of any kind, but particularly time limiting bad health to one year, are inappropriate for people with serious illnesses or disabilities.

Sanctions and penalties are most beloved by this government despite no evidence at all, anywhere in the world that they work. They have totally refused to listen or compromise at all over this and I can’t see that they will. The public are currently very supportive of sanctions and mostly believe they should actually be tougher.

However, workfare, work providers and some of the reality of sanctions have taken a hit this year thanks to the work of people like Johnny Void and Boycott Workfare, with big companies experiencing a strong public backlash leading them and charities to pull out of workfare and other failing schemes.

More to the point, the way the government has set up the “payment by results” scheme, means that small providers who tend to get good results are going to the wall while less targeted, less successful large companies are unable to hit the targets set. The reality is, most sanctions will either never be used, or will be quietly abandoned as the government realise they either cause too much embarrassment or the scheme collapses totally because none of the providers are getting paid.

Decisions take far too long. Appealing a wrong decision can take well over a year.

This is only getting worse with backlogs growing, targets for re-assessment falling further behind and tribunals taking longer. Soon, as the government realise that it is, in fact, impossible to actually assess 2 million people and keep on assessing them indefinitely. They cannot achieve accurate assessment rates assessing 11,000 people a week. There simply aren’t the HCPs to do the job.

Assessment rates need to fall by around half and government must accept that the whole process will take longer then they predicted. When assessment rates DO fall, the appeal rate also falls drastically as shown in Kettering who have implemented all of the Harrington changes enthusiastically. Getting the decision right first time, by taking the necessary time with each claimant saves the taxpayer millions and the person being assessed trauma and unnecessary waits for tribunals etc.

There is strong anecdotal evidence that Atos and the DWP are now pre-assessing many as unable to work without calling them for assessment. This is exactly what we always said they would have to do. It is how the original IB system worked and though the government are clinging on to the rhetoric, they are realising we were right all along and there really IS no point in assessing people who will never get better and who clearly will never work. This is a big win, but you’re unlikely to hear about it.· Healthcare professionals (HCPs) used by Atos to assess disability do not have to be doctors and do not need to have any specialism or prior understanding of the condition the claimant suffers from to make a decision.

Atos have pledged “mental health champions”, up and down the country, claiming that they will make the assessments fairer for those suffering from mental illness. This is welcome, but unless the assessor has some knowledge of the conditions they are assessing they cannot possibly make an accurate decision. Atos might consider other teams of expert assessor for other conditions. Though it might mean claimants travelling further to be assessed, if specialist teams were more accurate it would be a small price to pay. All HCPs should have a working knowledge of either general medicine or the speciality of the person they are assessing.

Reports written by HCPs are inaccurate; often bearing no resemblance to what the claimant reports was actually said.

This still seems to be shockingly common. The DWP have said in principle that all assessments can be recorded, but in reality are blocking the process. Until someone being assessed for ESA is afforded the same basic rights as a criminal, and assessments are recorded, claimants cannot make sure this doesn’t happen.

As both Atos and the DWP have said that assessments can be recorded and have pledged to get working recording machines into assessment centres, we can make sure people get accurate HCP reports by keeping the pressure on the DWP to provide these machines in every centre. This is one area that I know is under great pressure legally too. Having the law on our side can only help.

Questions are misleading, seemingly designed to “catch people out”

A longer assessment using the improved descriptors, should make this less likely, but there is a culture of suspicion between state and claimant that must be talked from the roots up. All the time ESA is only designed to catch the cheats, it will never serve those in genuine need.

Mail containing highly personal and sensitive information on forms is opened and sorted by a third party.

Mails used to be opened by the Royal Mail, sorted and only then sent on to Atos. Once the DWP finally accepted that the practise was commonplace, they have now pledged to stop it. We can make sure they do by keeping the pressure on.

Correspondence sent to the claimant is threatening and frightening.

This is one area where Atos have seemed very keen to make improvements. They have redesigned their website to make information more easily available, less frightening and more sensitive. They now have a patient charter and say that they will work hard to make the whole claimant experience more customer focussed and compassionate.

They would like people to advise them on how to do that, what we would like to change etc. Of course, we can refuse to make things better right at the point where Atos are asking how to, but that feels a bit like a four year old having a tantrum. We’re grown ups and we can’t change things if we don’t explain what needs to change and why.

Language used by politicians and press to discuss those claiming ESA is derogatory and demeaning. Scroungers, skivers, feckless, festering – we are called all these things. Journalism is often lazy and full of inaccuracies.

For some time now, we haven’t been unheard. Just two years ago, no-one was writing about ESA at all, other than to remind the public that we were all scroungers who could be working. Now, the Guardian, the Mirror, the Independent, Private eye, Political Scrapbook, Left wing blogs and even the Spectator are running regular stories about the failures of ESA and the WCA. Channel 4 have run some fantastic sections on the failures of ESA and even the Daily Mail have allowed blogs about ESA written by the indomitable Sonia Poulton.

Slowly but surely, things are changing. Bit by bit we are [persuading those that matter to persuade the public that we are right and the government are wrong.

It is frustratingly slow. The public have to read things many times over before they accept them and we still have a long way to go. But things are totally different now to two years ago and momentum is building in our favour.

ESA had cross party support. There was almost total political consensus that it was good policy.

From my own point of view, this is what I most wanted to change and the thing I’ve worked hardest on. All the time we still have a Labour party blind to the suffering of sick and disabled people, they are not a Labour party. It has been achingly slow with disappointments and faux-pas at every stage. It pains me that I have had to drag Labour to every concession kicking and screaming, that some in the party still think ESA is right. It hurts me to remember some of the judgemental speeches and thoughtless, unfounded coalition policies they originally supported.

But as I wrote here Labour have made real steps in the past year to put the mistakes of ESA behind them. They are now saying they are listening and travelling the country discussing sickness and disability policy with those actually affected. They have laid out a set of “rights” they believe sick and disabled people should be able to rely on and they have admitted ESA is a mess and isn’t working . Byrne’s Beveridge 2 speech was a turning point in which Labour started to dare to say the word disability again. I DO believe Labour are listening. They realise that we face very grave threats, that we are not just the usual suspects making a fuss. It’s up to us to tell them what we need. We can’t sit at our keyboards complaining then refuse to say what we want.

The EDM raised by John McDonnell was signed by 114 MPs and became the 3rd most signed EDM Every day a new Labour MP or even a Lib Dem or Conservative join the growing chorus of MPs opposed to WCAs. Again, it’s slow and it’s frustrating, but we’re getting there.

It is also now Lib Dem policy to oppose WCAs despite their actions. This might not help now, but could come in very handy in the event of a future Lib/Lab coalition,

Once the political consensus is broken, it gets much harder for the government to get away with leaving ESA a shambles.

Jon Cruddas, the head of Labour’s policy review, has promised to make sure anything we send to Liam Byrne and Anne MacGuire goes to the very heart of discussions over future policy. I believe him because he’s a good guy who’s written articles about sickness and disability that sound just like mine. He is a politician who really understands our issues.

I honestly believe we have a chance if we just make sure we tell Labour what they have to do and keep the pressure on them to do it.

But we have to tell them.

It’s pointless expensive and unnecessarily distressing to constantly re-assess those with disabilities so severe and profound that they will never work.

(Dealt with under delays and appeals above)

The help & support politicians say people with serious illnesses and disabilities will get to find work is totally inappropriate and ineffective. It conflates disability benefits with JSA (Jobseekers Allowance) Most people who lose ESA have not found work.

As I’ve argued here and here it is no good sorting out all of the problems above if there is no work sick and disabled people can actually get or do. The work provision is woefully inadequate, the system is not going to make work pay for us and we need to totally re-design the help and support government provide. If you can take part, please leave your comments below the articles and let politicians know what you need to work and what that work should be

The public were unaware of all these faults and generally thought ESA was a good policy.

Sadly, this is the area where we still have the most work to do. Most people still don’t know what’s happening and disability is not an issue they think about often or that interests them much. If we are sitting around waiting for people to wake up and say “Oh, this is terrible, we have to stop it!” they aren’t going to do that any time soon. Think how long it took for Tom Watson to expose phone hacking? It took years to spill over into genuine public outrage. There isn’t going to be a revolution.

All we can do is chip away, every day, telling more and more people, getting them to tell even more people. Slowly but surely, opinion will change.

If you look at all I’ve written above, we’re well on the way to winning most of the points above. If we haven’t won, we’re at least at the place where we’ve won a seat around the table. We’ve made massive progress since 2010 and the truth is that with new descriptors, accessible centres staffed by respectful courteous experienced staff, more paper assessments taking place, higher support group and WRAG numbers a commitment from Labour to make rights a reality for disabled people and to really listen to what we need we have all the ingredients of success. With Atos claiming that they are willing to improve assessments implement the Harrington changes and allow assessments to be recorded we’ve come a huge way in two years.

Of course we still have a long way to go, of course it isn’t enough but I think it shows for itself how successful a strategy of engagement and lobbying can be. We would have achieved none of this without sustained and often boring small changes, bit by bit, day by day, chipping away at everything that is warped and wrong with ESA. The government become more and more isolated by the day as the BMA, every main charity, Atos, the press and the opposition parties edge further and further away from supporting ESA.

This might not be the way everyone would do business but I don’t care about saving face or an ultimate glorious win that may never come.

I want to ACTUALLY win and that means compromise, boring detail, hard work and disappointments.

The proof of the pudding will be ESA in 2015. Tragically that will be too late for many, but better to win slowly but surely than to never win at all.

First published at Diary Of A Benefit Scrounger.

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Filed Under: Welfare Tagged With: ATOS, disability, esa, Sue Marsh, welfare, welfare reform, Work Capability Assessment

If you can only walk twenty metres you’ll get no help

December 21, 2012 By Latentexistence Leave a Comment

When PIP starts to replace Disability Living Allowance next year anyone who can walk just twenty metres will not qualify for help with mobility. Twenty metres is less than the distance most of the disabled parking bays at my local Tesco are from the door. It’s really not much. Hundreds of thousands of people will no longer get a mobility allowance and as a result will no longer be eligible to lease a Motability car. One day it might be you that needs this.

The government has also left out the phrase “safely, reliably, repeatedly and in a timely manner” from the PIP regulations. This means that if a person can do something just once, or can push through pain to do it, they might not get help and can’t even challenge it at tribunal.

These are just two of the largest problems. Please write to your MP and ask them to fix this urgently. I can’t stress enough how urgent this is. You can contact your MP at Write To Them

There is lots more information at We Are Spartacus.

Please also sign the (Stop the) War On Welfare petition which is calling for government to do a cumulative impact assessment on welfare reform. A great many changes are being made all at once and yet the government have not stopped to consider how they will affect people when taken all together.

This is the message that I sent to my MP, you can use mine as a starting point for your own if you are stuck. Remember that MPs pay more attention to unique messages.

Dear xxxxxxx,

I am writing to you about the new Personal Independence Payments (PIP) which will soon replace DLA. It has emerged following the publication of the PIP regulations last week that there are many problems with the regulations, two of which are extremely serious.

Under PIP a person who can walk just 20 metres will not be eligible for the mobility component of PIP. That is an astonishingly short distance. Even the closer disabled parking bays at my local Tesco are twenty metres from the entrance. This decision will deny mobility allowance to hundreds of thousands of people who rely on it, and an estimated 100,000 people will lose their Motability cars in the first year alone as a result.

I also note with alarm that the phrase “safely, reliably, repeatedly and in a timely manner” has not been included in the regulations. This phrasing is extremely important, since a person may be able to do something once but then not again for hours – effectively meaning that the activity cannot be done, but PIP will take no account of that.

Government ministers claim that the vulnerable will be protected. I hope that you can see why I am so concerned about PIP and how this will leave people trapped in their homes without transport and denied support for even the bare minimum of activities that they must perform. Please can you give me your assurance that these regulations will be amended so that disabled people can continue with their lives.

Sincerely,

[Name and address]

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Filed Under: Welfare Tagged With: benefits, disability, dla, pip, welfare, wow

Reassessing chronic illness

December 14, 2012 By Latentexistence 2 Comments

A thought occurred to me this morning. I know a hell of a lot of people who were labelled with the wrong diagnosis for years before receiving the correct diagnosis. Several people I know were diagnosed with ME before later discovering that they have EDS. Others have been told that their symptoms are somataform disorder (All in the head) and all further symptoms ignored even when life threatening. (Even somataform symptoms can be life threatening.) Plenty of people accumulate conditions and symptoms but never receive a further diagnosis for it, instead having everything attributed to the first illness or ignored. For example I had burning pain for a couple of years before being told that it was diabetic neuropathy rather than being caused by my ME.

Given that original diagnoses may be wrong, new symptoms may be missed, new tests and new treatments become available, and new research is undertaken, it makes sense to me that after a long period of chronic illness people should get a chance at uncovering new diagnoses and accessing new treatments. I would like to see patients automatically being offered a chance to start again with a blank slate after a decade of serious illness. A new GP (or perhaps two or three) would assess the patient, new tests would be run based on the latest research, and referrals to new specialists could be made. The latest treatments could then be offered. This could be life-changing for a huge number of people. It would be important for this to happen without referrence to notes except where life-threatening treatment needs to be maintained and without patients pointing the doctors towards their preferred diagnosis. There would also have to be patient choice and other safeguards at the heart of this.

The scheme would be expensive, of course, but it could well also pay for itself in replacing ineffective treatments with treatments that work and in enabling people to restart their lives. And in any case, MPs seem adamant that all articles and disability changes often enough that we have to be reassessed for benefits every year, so I don’t see how they can complain about the cost of this scheme.

What do you think?

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Filed Under: Illness Tagged With: chronic illness, disability, illness, sick

Iain Duncan Smith is proud of getting people off benefits

November 23, 2012 By Latentexistence 22 Comments

“We’ve heard enough from you.”

Owen Jones confronted Iain Duncan Smith with the names of two people who have died as a result of the work capability assessment. He did not react well. I urge you to watch this video of the last part of Question Time, particularly the last minute if you want to see what IDS is really like.

“Hang on a second, we’ve heard a lot from you. Let me tell you something. I didn’t hear you screaming about two and a half million people who are parked, nobody saw them for over ten years, not working, with no hope, no aspiration, we are changing their lives, I am proud of doing that, getting them off benefit is what we are going to do.”

Iain Duncan Smith is proud of getting people off benefits. Never mind that there is no work for them to go to even if they can, and that the way lives are being changed is by sending people further into poverty and homelessness. Not only that, but he thinks that being “parked on benefits” and left alone is a bad thing. Well those of us on permanent sickness and disability benefits do have hopes and aspirations. We hope to not have too much pain today and we aspire to getting the care that we need so that we can undertake something entertaining that isn’t lying in bed waiting to die. We probably don’t aspire to being a rich Tory, which is probably similar to being dead in the head of Iain Duncan Smith. As for nobody seeing sick people, now they are being reassessed so frequently that they are committing suicide. Winning an appeal at tribunal often leads to an immediate call to another assessment.

My wife has just received her FOURTH ESA50 in 2 years and her second in 4 months. SHE HASN’T EVEN HAD THE DECISION FROM HER LAST ONE! #wca

November 21, 2012 11:24 am via TweetDeck ReplyRetweetFavorite

@crazybladeuk

Wayne Blackburn

Dead people don’t get benefits – cartoon by @dochackenbush

Disability hate – from people who should know better

October 29, 2012 By Latentexistence 1 Comment

I’ve just been told about this rather disheartening incident involving my dad this morning.

My dad has a friend called Ray. Ray is blind and physically disabled. He has a guide dog, and uses a walking stick too. My dad has serious spinal problems and also walks with a stick. Both of them are entitled to use blue badges for disabled parking.

My dad and Ray went to McDonalds for breakfast this morning. This particular branch has just two disabled parking bays. This is not normally a problem but today when they arrived both were in use. One of the cars, though, contained a woman and a child with a blue badge on display who were sat eating food from the drive-through. My dad had to stop and let Ray and his dog out in the road and then park in a standard bay with further to walk.

My dad stopped and pointed out to the woman that she was blocking a disabled parking bay causing problems and risk for them and that this wasn’t necessary since she wasn’t getting out of the car and could therefore park in a bay further away from the restaurant. (He does this himself when he is not getting out.)

She was immediately hostile, announcing

“You don’t pay for my car.”

My dad pointed out that this wasn’t the point, but then she noticed his walking stick. At this point she actually threatened to physically hurt him, finishing with

“Walk away know while you still can, old man.”

My dad sensibly left it there.

This incident makes me sad because not only was this abuse of a disabled person but it came from the mother of a disabled child who really should know better. The rules for parking don’t explicitly state that she shouldn’t use the bay but they do say that you shouldn’t sit and wait for a non-disabled person and that consideration should be given. (See below.) Even so, she was hostile and abusive when there was no need to be. It also makes me sad that the woman’s first reaction was to defend her possession of the car, clearly related to public attacks on Motability in recent months.

Who can use the badge?

The badge is for your use and benefit only. It must only be displayed if you are travelling in the vehicle as a driver or passenger, or if someone is collecting you or dropping you off and needs to park at the place where you are being collected or dropped.

Do not allow other people to use the badge to do something on your behalf, such as shopping or collecting something for you, unless you are travelling with them.

• You must never give the badge to friends or family to allow them to park for free, even if they are visiting you.

• You should not use the badge to allow non-disabled people to take advantage of the benefits while you sit in the car. Although it is not illegal for a badge holder, or a non-disabled person waiting for the badge holder to return, to remain in the vehicle while the Blue Badge is displayed, consideration should be given to using a car park whenever possible.

• It is a criminal offence to misuse a badge. This includes people other than the badge holder taking advantage of the parking concessions provided under the scheme.

Taken from The Blue Badge scheme: rights and responsibilities in England, page 8

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Filed Under: Welfare Tagged With: abuse, disability, hate

The Paralympics tell us nothing about most sick or disabled people

September 1, 2012 By Latentexistence 7 Comments

I’m struggling to believe that I have to say this, I really am, but here goes:

The Paralympics tell us nothing about most sick or disabled people.

No, really, they don’t. The athletes taking part in the Paralympics, just like those in the Olympics, represent the elite. They are the people who are lucky enough to have time for training, money for equipment, the physical ability to push themselves that far. Just as you could not expect any person who is not yet disabled to run as fast as Usain Bolt or to dive with as much skill as Tom Daley, you cannot expect a disabled person to run like Oscar Pistorius or swim like Ellie Simmonds.

For sick or disabled people the struggle is not to get to Paralympic standard but to achieve the same standard as most people who are not disabled. That’s what disabled means. For whatever reason the combination of the way that society is arranged and the impairment that a person has means that they are unable to function in the same way as most. Disability makes everything harder. It makes things more exhausting. It makes things more expensive. It makes things take longer. Sickness and disability can require everything that a person has and still not allow them to function. For many when the impairment is too great no amount of adjustment or struggle can overcome that, although technology and the efforts of those around them can provide other means for a happy life.

For a lucky few that sickness or physical impairment is not a barrier to Paralympic greatness. Even then, though they may be able to run or swim or shoot they might still not be able to dress themselves or wash themselves or cook for themselves. We should celebrate their sporting abilities, but we must not think that sporting ability tells us anything else at all about Paralympic athletes or any other sick or disabled person.

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Filed Under: Politics Tagged With: cuts, disability, paralympics

Mental illness is more disabling to me than physical illness

August 1, 2012 By Latentexistence 12 Comments

I have reached the point where mental illness is more disabling to me than physical illness. Before I became depressed I was physically ill with ME, diabetes and migraines and I was limited by fatigue and pain but I could write, I could repair computers, and I could focus to read or watch TV, as long as I planned around my illness. With regular rests and flexible timing I could engage with the world and get some things done. Now, though, depression and anxiety steal my focus for hours at a time and prevent me from completing even the simplest task. I start writing blog posts and manage one line. I start watching TV and manage 2 minutes of a half hour episode. I start games then give up. I drive to shops or friends and then can’t get out of the car. I look at my forms for help with power wheelchair costs and freeze up. The phone rings and I pull the duvet over my head.

My physical and mental illness seem to feed off each other too. If I reach a point of (even more than normal) exhaustion then I will also become overtaken by despair. Depression and anxiety also make it impossible to work towards improving my physical health. I need to get a routine and start pacing my activity but mental health problems mean that I can’t even think about doing things when I need to.

I’m not sure that I have a point in this blog post other than wanting to rant a bit. I suppose if anything my point is that depression is not some minor inconvenience. It is a real, crippling illness that will destroy a life just as effectively as any physical problem.

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Filed Under: Depression, Illness Tagged With: anxiety, depression, disability, illness, mental health, sick

No wheelchair for you!

June 6, 2012 By Latentexistence 8 Comments

My old broken powerchair

I wrote back in March about the death of the power wheelchair that I had been given and my quest to obtain a new one. It was old but it served its purpose in letting me go further from home and use public transport without requiring another person to push my wheelchair. Since my ability to walk is fairly limited I do need a wheelchair when I am out of the house. There are four ways that I know of to obtain a manual or powered wheelchair.

The NHS
Lease one from Motability using the mobility component of DLA
Buy one
Get a charity to buy one

It should be obvious that buying one is not really an option for most people living on sickness and disability benefits. Many people who need a high end power wheelchair do lease one from the Motability scheme however that option is not available to those who already use their DLA to lease a car through the scheme, or who do not receive DLA at all. In some circumstances a charity might be willing to foot some or all of the bill for a power wheelchair. Specialist charities for certain diseases or impairments might do this although in practice most do not have this option either. In my case there is a charity that helps people in the area that I live in who might be able to pay for part of the cost of a power wheelchair for me but since charity funds must be carefully looked after they require me to need a wheelchair but be unable to get one from the NHS before they will help. That leads me to the main option, to ask for a wheelchair from the NHS.

Soon after my power wheelchair broke an occupational therapist referred me to Worcestershire Wheelchair Services and I was told that I would get an assessment but that I would have to wait a long time. In the meantime I bought a manual wheelchair using my credit card. I have a bankruptcy in my past because of my illness so that credit is at an interest rate of 34% APR.

I knew when I was referred for a wheelchair assessment that I would not qualify for a power wheelchair because I only need a wheelchair when out of the house but that was OK because once I had an assessment I could turn to my local charity. As I understood then from other doctors and therapists I should qualify for a manual wheelchair, although probably one with small wheels that required an attendant to push it because self-propelling a wheelchair soon hurts my arms as much as walking hurts my legs. (This is why I purchased a self-propel chair, since I would like to be able to turn myself around even if I mostly have someone pushing.)

Then, today, I received this letter from Wheelchair Services. (Click to enlarge.)

The letter informed me that I would not receive any wheelchair from the NHS because in Worcestershire they are

“Currently only able to supply wheelchairs to people who meet higher level needs i.e. to those clients who have a permanent mobility problem, who are unable to walk and who require a wheelchair within their own home.”

So, because I can walk or stagger around at home, I will not receive any kind of wheelchair to help outside where I cannot walk more than a few metres or stand up for more than a few seconds – not even a manual wheelchair. They won’t even visit to assess me. There are also many people who need a power wheelchair but are unable to get one from the NHS because they, like me can walk to some extent around their own home. In a lot of these cases they would use a wheelchair inside if only they could fit one in their home, but because they cannot they too are denied any help from wheelchair services. I know of several people who are currently trying to raise funds through donations to purchase their own power wheelchair because of this.

I’m not too worried about this in my own case because I have the manual wheelchair that I bought, and I have my wife to push it much of the time, and I still hope to get help from a local charity. I am far more worried about all the other people who haven’t been so fortunate and have no chance to buy a wheelchair, no charity help, no car and no one to offer lifts. I struggle to understand the justification for the NHS in Worcestershire not giving a wheelchair to people who need one but only when outside. If applied nationally, this policy would trap tens or hundreds of thousands of people in their own homes, unable to go out to medical appointments, to buy food or to visit family and friends. I don’t know how long this policy has been in place in Worcestershire but I hope that it is the only area doing this.

Worcestershire Wheelchair Service informed me that their qualifying criteria have been this way for a number of years due to low funding. Worcestershire is not looking like a good place for a chronically sick or disabled person to live right now; Worcestershire council are planning to remove funding for care at home for a large number of people and send them to live in care homes instead. This is a huge backwards step, a removal of freedom for a lot of people and reverts to the old method of locking those with disabilities away from society. This policy on wheelchairs will ensure that more people are trapped at home and so require care from the local authority, which in turn may put them into a care home.

Are we as a country really so short of money that this is the route we want to take?

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Filed Under: Welfare Tagged With: cuts, disability, dla, funding, nhs, politics, powerchair, welfare, wheelchair

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