Replacement of disability living allowance headline news for hours

The replacement of DLA with PIP was the main story all morning until cruelly kicked from the headlines before the evening news. Here are some collected clips and links.

Steven Sumpter on Sky News – Video (Main headline all day)

Steven Sumpter on LBC Radio at 08:05

Margo Milne on LBC Radio at 08:15

Sue Marsh on 5 Live at 09:05

Sue Marsh on Radio Leeds at 09:50

Steven Sumpter, Ema, Kaliya Franklin and Sophie Christiansen on 5 Live at 10:35

With Stephen Duckworth of Capita

Rebecca on on BBC WM

The Guardian – Three disabled claimants launch legal action against new mobility tests

The Independent – Ed Miliband attacks ‘nasty’ George Osborne as DWP faces court challenge over benefit reforms

Ed Miliband criticised the government’s welfare policies but still fails to understand what went wrong with the work capability assessment

Sue Marsh has attempted to combat some of the lies the government tell about DLA

I’m one of three people taking legal action against the DWP over the PIP consultation

Labour People’s Policy Forum

People who read my rant about The Labour Party last week will be surprised to know that yesterday I attended the Labour People’s Policy Forum in Birmingham and put questions to Labour MPs. I won’t be voting Labour any time soon but for all of the past actions and the betrayal of Labour, they are likely to be in power in 2015 and so I jumped at the chance to influence their next manifesto.

Caroline Flint, Maria Eagle and Mary Creagh

I put questions to Caroline Flint, Maria Eagle and Mary Creagh about income security and benefits. I wasn’t particularly thrilled by the answers but I was pleased when Maria Eagle told me that demonising disabled people was the worst thing that the government had done. I also asked them if they would ever consider basic income but the answer was politician-speak for “no”. (It took a few more words than that.)

In another forum Emma Round managed to get a round of applause for suggesting that Labour should apologise for ESA, the work capability assessment and Atos.

Ed Miliband at the People's Policy ForumThe main event of the day was a Q&A session with Ed Miliband. The audience was made up almost entirely of people who were not members of Labour, which I think was a brave decision especially since the first few questions were very angry. It opened with a demand that Labour challenge the Welfare Reform Act, calling it an insult to a developed country and an assault on its people. The second speaker gave a call to protect the NHS, saying “I work in the NHS, I believe in the NHS but next week I won’t BE in the NHS, I’ll work in public health. Come next week everything that we do and across the NHS is going to go out to tender.” These sentiments got applause and agreement from the audience. Questions followed about education, jobs, equality and much more.

Eventually I got to ask the question which had brought me there through the snow and despite the two hours of awful driving conditions and the resulting cost to my health. I asked Ed Miliband to scrap Personal Independence Payments and keep Disability Living Allowance. I’m afraid the answer was as vague and meaningless as I expected, but I am glad that I got to put the question to him in a public forum.

My question to Ed Miliband

Watch the whole Q&A session with Ed Miliband

The show starts about 44 minutes through the video.

uklabour on livestream.com. Broadcast Live Free

Telling the full story of benefit changes

Mainstream media has shown very little interest in covering the coming changes to benefits and the impact that this will have. There is an occasional segment on TV news and a few more newspaper articles but even after two years of campaigning few people realise what is actually happening. The common reaction is disbelief and accusations of scaremongering and exaggeration.

My idea is to create an hour long documentary film using all the professional tricks to make it compelling and informative so that it conveys the full impact of the changes hitting people who live on benefits, whether unemployed, disabled or low-income. It would use personal stories, graphics, commentary, interviews and music to tell the story. The film does not have to convey a political message, only the reality of the changes. Any positive changes that can be found should be included too. I believe that even if made as unbiased as possible the film will be devastating in its message.

To get mainstream appeal the film could be narrated by and feature interviews with celebrities, with well-known paralympians potentially being the best choice but others too.

While a spot on television would be the ideal, these days a film on YouTube can get millions of views – potentially more than would see on TV. An online campaign using very short clips and hashtags could attract viewers. To raise the chances of it being seen on TV a ten minute version could be made using materials from the full version and sent to TV stations everywhere.

I’ve noted some of the steps that I think will be required. They’re not necessarily in any particular order.

  • Find a suitable name and some introductory branding
  • Create a website for the film
  • Crowdsource a list of all benefit cuts, eligibility reductions, care and service cuts and the impact of all this.
  • Start an awareness campaign on social media to get people involved.
  • Ask people to submit short clips through Vine and YouTube telling their stories and what they expect to happen. Clips can be recorded with smartphones or webcams. Gather these clips under a hashtag on twitter.
  • Raise funds through donations  for travelling to record interviews.
  • Interested parties meet to discuss content. Further meetings where appropriate in later steps.
  • Record interviews with celebs.
  • Follow up personal stories for better recordings.
  • Create graphics and animations to explain the changes.
  • Edit together a draft version of the film.
  • Record narration of the changes.
  • Create transcripts and subtitles.
  • Meet up physically and make a final version of the film.

This is all very much at the ideas stage, please comment with your views, suggestions, offers of help etc. Lets make this happen!

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

20m in the house of commonsWhen 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]

 

Why does everyone have to work?

An audio version of this blog post is available on episode 164 of The Pod Delusion, 40 minutes in.

A lot of tasks are carried out by people not employed to carry them out. People care for relatives, cook for neighbours, run clubs for children, look after communal gardens where they live. This is the real big society. Many of these people are not in employment at all, never mind paid to do what they do.

Others pursue hobbies that might bring great joy to them and to society, or provide useful innovations applicable to other things. Writers, inventors, amateur scientists, musicians, artists – all produce things of great worth to society. When people work all hours for an employer these tasks are neglected but when people work less or not at all they are free to pursue these things.

Parents are not valued by society for the task that they do, instead it being expected that both parents in a couple will work

There is worth in a vast number of tasks that are not part of “work” and yet these tasks are not valued by people and government does not see any worth outside of a paid job.

Current attitudes to welfare benefits seem to focus on dividing people into deserving and undeserving poor. Politicians argue that we should have more conditionality in our system; that we should return to an insurance style of benefit for out-of-work benefits so that those who have not spent enough time in work cannot claim the same benefits that those who have worked for years can. They want to take benefits away from those who don’t make enough effort to find a job. The Work Programme and Mandatory Work Activity scheme send people to do unpaid work for big businesses and charities, punishing those who refuse by taking away their tiny benefits for weeks, months or even years, even though such “work experience” is often simply manual labour that requires little training and does not help anyone to find a permanent job. Many people express the opinion that those in receipt of welfare benefits should not have “luxuries” such as Sky TV or broadband, and resent such things being paid for by benefits out of tax funds, seeing themselves as personally paying for such things. Indeed, government ministers have floated the idea of paying benefits in the form of payment cards that cannot be used to purchase alcohol or tobacco which is a terrible idea.

The question that I want to ask, though, is why does everyone have to work?

I believe the answer is that they don’t.

In our modern industrial society we have driven down the cost of production through two things: exploitation of cheap overseas labour, and mechanisation and automation. I will come back to the first of these later, but what of the second?

Mechanisation has vastly reduced the need for labour. More could be done to continue this trend, but historically it has been opposed by unions because it puts people out of work. I think the time has come to say GOOD. Let’s put people out of work. Automate everything that can be automated. The remaining jobs should be divided up between everyone who wants to work, reducing the hours of all jobs until all those who want to work have the working hours that they want.

Of course doing so would leave many people without any income, or dependant on Job Seeker’s Allowance and looking for jobs that just don’t exist. (As is already the case.) These people cannot be punished for failing to find jobs that don’t exist, that is indefensible. I propose a change in the way that society thinks about people who do not work. We must stop resenting them, stop begrudging them any small luxuries that they may have, and instead pay them a decent income that allows a decent life. But that would be unfair! Why should they get something that you do not? Well there is a solution to that. Pay a salary to everyone, working or not, deserving or not. This concept is known variously as Universal Income, Citizen’s Income, Basic Income, or combinations thereof. Here’s how it would work:

Every adult citizen would receive a salary, paid to them by the government, of enough to cover basic living costs. It would perhaps be set at a level that would cover one person living in a shared house or a couple living together.

To finance this, the tax allowance would be abolished. Instead the citizen’s income would be paid tax free, and all earnings from other sources would be taxed at the standard rate from the start. Nearly all in-work and out of work benefits would also be abolished. Anyone without a job would stop receiving Job Seeker’s Allowance and Housing Benefit as those are replaced by the Citizen’s Income. Indeed, Housing Benefit to anyone who is in work would also cease.

Sick and disabled people would no longer receive ESA. They would receive Citizen’s Income too. In their case, though, they have additional expenses and a higher cost of living caused by needing to adapt things around them and inability to access some services so they would still receive Disability Living Allowance to provide for that, and care would still be funded by government.

The benefits that Citizen’s Income would bring are large. There would be no need to means-test people, and means testing is expensive. There would be no reason to track people’s efforts to look for work, and there would be no reason to punish anyone for not working – eliminating a huge bureaucracy required to do those things. There would be no stress and fear of losing benefits imposed on people who for one reason or another cannot work, no Work Capability Assessment – leading to improvements in health and quality of life.

Of course people will object to those choosing not to work, which is why we all need to approach the idea with less judgement. Although benefit fraud is tiny and the number of people who would choose not to work is low, such people do exist. There are people who do not want to work and there are people who are just plain unemployable. Under the current and proposed systems they would be punished for not finding work and ultimately end up homeless or dependant on family or charity if anyone at all. I do not think doing this is the action of a humane society. Would it not be better to let these people stay out of the workplace, avoid employing people who do not want to be there or would not do a good job? It may well be that eventually such people will decide that they do want to work and will then find a job that they want to do and pay taxes. There are many people that do want to work but only part time, and a Citizen’s income would enable them to do so where the current system would make it impossible.

Allowing more people to work for less hours might also have the benefit of making some jobs more attractive so that work currently carried out overseas or by immigrants becomes feasible to carry out locally, thus working towards solving the problem of exploitation of cheap overseas labour.

Such a system would have to be introduced alongside rent caps to prevent private landlords from taking advantage of more available income by inflating rents. I cannot pretend that a Citizen’s Income would not be very attractive to people in some other countries too, and short of introducing the idea worldwide we would have to consider carefully how to treat immigrants. (This sentence makes me uncomfortable, but I think it does need to be considered.)

Citizen’s Income would:

  • Replace the tax allowance and the benefits system
  • Make savings on means testing and administration
  • Allow freedom to work part time, full time or not at all
  • Allow the pursuit of hobbies and interests away from work
  • Produce inventions and innovations that benefit us all
  • Result in the production of books, music and art
  • Allow people to perform services for others and their community
  • Shift the balance of power from employers to employees
  • Provide security when jobs are not secure
  • Remove the fear and stress of disability assessments

The whole idea of Citizen’s Income necessitates a huge shift in the way that our society thinks but since many are calling for a rethink of our welfare system anyway I think now is the time to consider it.

Disclaimer: I am no expert, so if I have made any errors or misrepresented anything please let me know.

Further Reading

Basic income guarantee [Wikipedia]

Basic Income Earth Network

Citizen’s Income Trust

A Universal Basic Income

Global Basic Income Foundation

 

What’s the difference between 1930s Germany and modern-day Britain?

Before we start I would like to point out that I am not a historian and I am not a sociologist and as such I have done my best to present the information here as I understand it. With that out of the way, I’ll start with an overview of how disabled people were treated in Germany during WWII.

1930s Germany

Nazi Euthanasia Propaganda
A poster about how expensive disabled people are.

The Aktion T4 programme ran in Germany from 1939 to 1945. In the 1920s  Alfred Hoche and Karl Binding, part of an extreme eugenics movement, advocated killing those who were judged to have “life unworthy of life.”  In the 1930s there were huge cuts to state institutions causing overcrowding and Nazi propaganda emphasised the cost of caring for mentally ill and disabled people. In 1939 parents of disabled child Gerhard Kretschmar wrote to Hitler to ask him to permit their child to be killed. Hitler agreed and immediately set up a committee whose job was to organise more such murders – Aktion T4. When the war started parents were told that their mentally ill and physically disabled children were being sent to special treatments centres. In fact they were murdered without the knowledge of the parents. The programme was soon extended to adults, starting in Poland then in Germany. Throughout the programme Hitler knew that there would be huge opposition to such killing and so he never put his orders in writing. The one exception was a secret letter written to authorise the formation of the Aktion T4 programme, mainly because his justice minister would not cooperate without one. The programme operated in secrecy until it was too late for most people. Under the programme at least 200,000 disabled people were murdered over six years, either through lethal medication, starvation or gas chambers.

Modern Britain

Now we jump forward to Britain today. The events I describe in the paragraph above are unthinkable. No government minister, no tabloid newspaper, no man in the street would advocate such things, right?

That’s not quite true though. Most of the pieces are in place. We have propaganda pushing the idea that sick and disabled people are scroungers, workshy, lazy. This propaganda is coming from government ministers, their special advisers, and tabloids like the Daily Express, The Sun, the Daily Mail. Even broadsheets like the Times and the Telegraph have contributed. Such propaganda has even been raised by MPs in the Work and Pensions Select Committee and ministers told to stop. The propaganda is working too, with hate crimes against disabled people up in vast numbers.

We have many people fighting to legalise assisted suicide, inadvertently promoting the idea that life for some people is not worth living. Sure, we’re only asking for voluntary euthanasia, but what other factors might be in play? Pressure to stop being a burden, financial problems, cuts to care all contribute to a desire for death. If euthanasia becomes legal what is to stop people from being pushed to kill themselves? It may be overt or it may be through suggestion and through making their lives hell. (This is more my fear of how it could go wrong than any judgement on my part for or against euthanasia.)

We have cuts to local authority care budgets, starting in Worcestershire, that mean anyone whose care costs more than sending them to an institution will lose some care. The politicians argue that it’s a choice because people can choose to move to a care home or to cut some of their care provision. But what to cut? Eating? Washing? Dressing? Using a toilet? We have already seen people lose in court after fighting to not have to wear a nappy. Adults are expected to soil themselves rather than get help to use a toilet. We have also seen the loss of the independent living fund. The net result is loss of care or institutionalising people. Most care homes are run by private companies and neglect does not seem uncommon. I think more abuse and neglect is likely especially when companies are cutting costs because they have underquoted better homes.

We have sick and disabled people being  judged as fit to work and told to claim job seeker’s allowance and look for work, and we have even more seriously sick and disabled people being placed in the Work Related Activity Group. Both groups are subject to The Work Programme where they are expected to undertake unpaid work experience for large companies, and government plans are to make such work placements of unlimited duration. Work makes you free.

Under these plans anyone who is seen to not be cooperating with The Work Programme and other work related activities will see their benefit income slashed. Those on Job Seeker’s Allowance can have their entire allowance removed entirely for weeks, even six months. Those on Employment Support Allowance (e.g. too sick to work) will see three quarters of their allowance removed. Of course anyone who has been judged as fit to work or has been placed in the WRAG is expected to be capable of going on work placements even if their assessment was wrong and they are waiting a year for an appeal, and even if people are seriously harmed by trying to work. The result is that those who don’t destroy themselves trying to find jobs that don’t exist or going to endless work placements will instead not be able to afford food, clothes, fuel bills, rent and more. Many will be able to use food banks but some will not be physically able to get to them and food banks rely on charity from other people who are struggling too.

The result

Is it such a large step for disabled people to be dying? No. It’s already  happening. Reports in April claimed that 1,100 people had already died after being placed in the work related activity group. That’s more than thirty people a week. This is what Chris Grayling calls “Tough love.”

Some government ministers make policy decisions without thinking about the consequences of what will happen in practice. Others are fully aware of what will happen and just don’t care. Either way, they are often covered by claiming that their policy in itself does not harm people, even though the flaws with implementation allow people to fall through the net and come to harm. Government ignore evidence. They dismiss statistics, they blame the previous government, they claim that processes are being sorted out now, they claim that any harm is the fault of the sick or disabled or unemployed individual. The Government are hiding behind Atos and A4e who are “just carrying out orders” but they way they carry out those orders makes things even worse. Government ministers have the same attitude as many other people in power – they can say “make it happen” and the minions do the dirty work.

In 1930s Germany the government themselves ordered the rounding up and the killing of disabled people. In modern-day Britain the government can claim that it is not their fault, even that it should not happen, but private companies and the chasm of bureaucracy between various government departments are what kill people. Starvation, homelessness and neglect are what will kill people. The implementation is different and the scale is different but the attitude and the outcome are the same.

 

Further Reading

Godwin’s law must die [A Latent Existence]

Action T4 [Wikipedia]

Disabled benefits claimants face £71 a week fines for breaching work plan [The Guardian]

32 die a week after failing test for new incapacity benefit [Mirror]

Early day motion 295 [Parliament]

Work-or-starve plans for seriously ill welfare claimants might backfire [Eklesia]

Past Caring? [We are Spartacus]

 

No wheelchair for you!

My old broken power wheelchair
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.

  1. The NHS
  2. Lease one from Motability using the mobility component of DLA
  3. Buy one
  4. 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.)

Letter from wheelchair services

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?

Help We Are Spartacus respond to the PIP consultation

We Are Spartacus: PIP Consultation

The government are carrying out a consultation about Personal Independence Payments, known as PIP, which will replace DLA from next year. The consultation is our chance to tell the government what is wrong with PIP, and it could determine who qualifies for help and who does not. We Are Spartacus have come up with a survey which will help them write a group response to the consultation. Please help them by taking a few minutes to answer their survey. The survey assumes that you have seen the draft PIP descriptors, so if you have not please head to the We Are Spartacus website and have a look through the Unofficial Guide to PIP Consultation.

Read the unofficial guide to the PIP consultation

Take the We Are Spartacus PIP Consultation Survey

 

 

 

 

 

Legs, wheels and money

My old broken power wheelchair
My old broken powerchair

My electric wheelchair broke a couple of weeks ago after going up a too-steep ramp into a train, toppling backwards and then falling forwards fairly hard. That was quite inconvenient, especially when I discovered that the motors and brakes have burnt out and it will cost about a thousand pounds to fix. Since then I have had to fall back on a manual wheelchair, pushed by my wife. I can move my own wheelchair, just about, but it is still painful and exhausting for me. Fortunately I have just got a new car, so I can drive to most places and then use the wheelchair on arrival. Unfortunately, the manual wheelchair that I was given by family doesn’t fold up enough to fit in the back of my car.

I will qualify for a wheelchair from the NHS, and so I have asked to be referred to the local Wheelchair Services for an assessment. I am slightly stuck though. Walking and standing around result in high levels of pain and fatigue for me, as well as leaving me in danger of losing my balance and falling over. Despite this, I can walk around at home most of the time with only an occasional fall. NHS rules say that I can have a manual wheelchair for use outside, but because I can walk around at home I will not qualify for a powerchair even though I can’t propel myself most of the time. In fact, I probably won’t even get a self-propelled wheelchair since moving it myself can cause some pain and fatigue too, so I will end up with an attendant wheelchair, requiring someone to push me with no option to move myself at all. (See page 16 and 17 of this document for the full rules.)

Because a referral to the wheelchair service will quite likely take a few months, (I won’t be a high priority) and because I will probably get an attendant wheelchair rather than a self-propelled one, I bought a new wheelchair yesterday – a shiny new Karma Wren 2 self propel. The chair cost me £279 from a local shop called Indy Mobility. I could have found it slightly cheaper online but the staff at Indy Mobility were very helpful and put up with me for a couple of hours while I looked at all the options. They also didn’t charge me for the work done so far on my broken powerchair.

Karma Wren 2 wheelchair
My shiny new wheelchair

I was surprised how much easier the new chair is to self-propel than both my old one (and it is old!) and my dad’s one which I borrowed when my power chair broke down. That is partly because the new chair is made from lightweight aluminium but I think also due to it not being worn out. It is light enough that I can lift it into my car myself as long as I am not too tired at the time. It fits nicely in the boot of my car, as you can see in the picture below.

My new wheelchair in the back of my car
My new wheelchair in the back of my car

Wheelchairs are one of those extra expenses that disabled people can have which Disability Living Allowance is supposed to help pay for. While chairs are available from the NHS, it is quite common for them to be inadequate or to take a long time to get, even apart from cases like mine where I won’t qualify for a power chair which would help me the most. The Motability scheme which leases cars to disabled people in return for the mobility allowance from their DLA can also lease high-end powerchairs to them but I can’t do that because I already spend my DLA on a Motability car so I have had to buy my wheelchair with a credit card at very high interest. I think there are quite a few people stuck in this situation including Kaliya (@BendyGirl) who is currently trying to raise funds for a powerchair of her own. She really needs one to get around outside – just see her “deathwalk” video if you need convincing. Kaliya could use a powerchair inside as well, except that her flat does not have enough room for one. You can donate to Kaliya’s powerchair fund by sending money with Paypal to wheelchairforkali@carolineengland.co.uk or visit her blog post about it.

Karma Traveller 2 powerchair
Karma Traveller 2 powerchair

I have a possibility of getting part of the cost of an powerchair paid for by a local charity – the same one which gave me a small grant when I went to university and gave us food money last year when our benefits were screwed up. They require me to have attempted to get one from the NHS first, and so I must wait until I have been assessed before I can do that. I am hoping to take a voucher towards the cost of a wheelchair rather than a wheelchair itself from the NHS so that I can then put that voucher together with a charity grant if I can get one and buy a powerchair. I plan on getting one that is small and light and can come apart to go in my car – my old one weighed 90kg and even healthy people struggled to lift it. Indy Mobility suggested a Karma Traveller 2 which I think costs about £1,700, although I will have to find out what else is available. For now I will just have to rely on my wife to push me.

 

Benefit guilt

I recently wrote about my income in detail. I did so partly because the benefits that I receive were listed in a newspaper (My own fault) without actually explaining them, and the amounts caused a few negative comments.

Since making my income public one thing that has been bothering me is that while my wife and I now receive enough money to live on and DLA to provide for the extra costs of my care and mobility, a vast  number of my friends do not. And I feel sort of guilty about that. I know that I shouldn’t, I am getting the proper benefits for my circumstances, but I feel horrible that other people – many with greater need than me – don’t get the help that they are supposed to get.

I went through a Work Capability Assessment with Atos and I was placed in the support group. I know that I am sick enough to merit ESA and DLA but it was always in doubt whether Atos would recognise that. I can’t help wondering what would have happened if my journey to the assessment centre hadn’t been so awful. (You can read about that travesty on a previous blog post.) If I hadn’t arrived shaken, stressed and exhausted perhaps my assessment would have gone quite differently – Atos have been criticised for ignoring variable health problems and could easily have judged me differently if I had appeared well that day.

Perhaps it is chance that I ended up in the Support Group for ESA rather than the Work Related Activity Group or even found fit for work. But then my DLA was awarded on the basis of the Work Capability Assessment too, even though that isn’t supposed to happen until PIP is introduced. So is that two benefits received by pure chance? Being awarded ESA helped me to get DLA and getting DLA has increased the amount that I get from ESA, and both of those ensure that I get housing benefit too. At some point I may get carers allowance although that might lower the amount that I get from ESA.

The point is, I now have enough to live on without being in poverty and always struggling to pay the bills. Many other people are not so lucky. What I really want is for access to these benefits to be available to all the other people that need it. I have so many friends who haven’t got the benefits that they so desperately need. Friends who can’t walk, or can’t get out of bed, or can’t cook for themselves. Friends who have been through the assessments by Atos and refused on absurd grounds. Friends who are in hospital near death and don’t get benefits. I was really terrified that I wasn’t going to get my ESA, and the form filling for benefits and the assessment process itself made me more stressed which led to me being more physically ill too.

Even when people have managed to get all the benefits to which they are entitled it isn’t always enough. I need relatively few adjustments to live. A wheelchair, a shower seat. Some people need hoists and lifting equipment and wet rooms and stairlifts and bigger rooms to fit it all in… and the list goes on. Of course some of that can be paid for in other ways such as from council funds or (until now) the Independent Living Fund but many people end up sorting out their own adaptions. I talked to my GP about getting an NHS wheelchair yesterday and she suggested that it would be quicker and easier to buy one for myself. (Not that I can’t try to get an NHS one.) That happens a lot with costlier items too.

Clearly the benefits system isn’t great at the moment. It’s obvious that it needs reform to solve these problems. But – and this is an important but – the Welfare Reform Bill doesn’t solve these problems. It makes them far worse. It abolishes multiple sources of funding, it cuts the DLA / PIP budget by 20% and it restricts who can get help and who will receive PIP. Government ministers have told us that those most in need will get more help. What they are less keen to tell everyone is that the extra help for those most in need is being snatched away from those who are only quite in need. If you need help but not loads of help, that’s tough. Because the government says you’re not going to get any help at all.