This blog post is here to collect some of the comments that I have left on other sites recently. Mostly for my own record in case I want to re-use any of them, but feel free to read them anyway.
The Welfare Reform Bill will, according to the Parliament website, replace means-tested benefits with a new Universal Credit. This is a huge change which in theory I am in favour of, except that I believe that the government have got the implementation and the details very very wrong. The website lists these other key areas where the bill will change things:
- introduces Personal Independence Payments to replace the current Disability Living Allowance
- restricts Housing Benefit entitlement for social housing tenants whose accommodation is larger than they need
- up-rates Local Housing Allowance rates by the Consumer Price Index
- amends the forthcoming statutory child maintenance scheme
- limits the payment of contributory Employment and Support Allowance to a 12-month period
- caps the total amount of benefit that can be claimed.
During the Committee Stage, the Government amended the Bill to provide for the establishment of a Social Mobility and Child Poverty Commission.
That all seems quite well-intentioned and innocuous, however the detail is a lot less reassuring. I probably can’t do any better at explaining why than this blog post which I recommend reading – So The Welfare Reform Bill Doesn’t Affect YOU!?!
The aspects of the bill that most worry me are those that impact on sick and disabled people. Those aspects are:
- Limiting contribution based ESA to one year for people in the WRAG, after which people may only claim income-based ESA if their partner earns less than £7,500 per year. People who have paid their National Insurance and have become ill but are expected to regain some ability to work within two to five years with the right support will receive contribution based ESA for one year. After that they will be made dependant on any partner or family earning over £7,500 per year and have no independent income unless they live alone.
- Introducing frequent assessments for everyone receiving PIP, even those who will only get worse, or cannot get better, and including those made worse by assessments.
- Making PIP much harder to get by redefining disability. (Expecting to save 20%) People will be considered able to wash themselves if they can wash only above the waist. I am sure that everyone wishes to clean their genitals and anus. As a diabetic I am supposed to pay very careful attention to looking after my feet, but if I can’t wash them, I won’t get help with it. Changes to the definition of mobility are worrying too.
- Stopping the practice of treating people disabled from childhood as having paid NI – meaning they will never get contribution based ESA and so never have an independent income
- No longer pay for spare rooms in social housing, even for disabled people with a proven need such as a separate bed for a partner or carer or a space for mobility equipment or for treatment of some kind.
- Prevent access to other support by removing PIP from many people. DLA / PIP is a gateway benefit which allows access to things like the blue badge parking scheme, a free bus pass, or proof of disability to access support from energy companies and others. When many people do not qualify for PIP they could lose these things.
There are a whole host of problems for people who are on a low income or unemployed. The bill will:
- Introduce sanctions – stopping benefits for four weeks, three months, or three years. Punishing people by removing their income will make people homeless and may drive some towards crime. Unfortunately the range of things that you could be sanctioned for is more than just fraud.
- Punish people for making mistakes on benefit claim forms.
- Send people on unpaid work experience (“The Work Programme”) and sanction them if they don’t go or if they don’t get a good report. This is the same work programme that has people doing unpaid shelf stacking or washing floors alongside people getting a proper wage for the same job. And a mere 20% of people on the work programme get any kind of employment out of it.
- Sanction people who don’t improve their appearance when told to. To what degree changes can be ordered is not specified.
- Charge parents for the use of the Child Support Agency after breaking up. £20 – £50 fee, plus 7 – 12% of ALL income. An extra income tax for not having a partner, or for having escaped from an abusive relationship. Charges are likely to cause people to ignore the CSA – which is the government’s intention – but probably in favour of no support at all.
- Limit total household benefits to £26,000 per year. (Except when on high rate PIP?) The main problem with this is that people in expensive places like London or Brighton will be forced to move away, potentially leaving family behind and losing local support such as care or child care.
- Abolished the social fund, which pays for emergencies and provides crisis loans.
- Introducing vouchers to pay for particular costs – potentially where you can buy your food, clothing, energy and so on will be dictated to you.
- Force both people in a couple to look for work in order to qualify for Universal Credit. Since Universal Credit replaces housing benefit, low-paid (minimum wage) families will no longer have a choice to send one parent to work while the other cares for the children. Both parents must work.
Some useful links
My report from the Invisible Invincible protest is now on The Pod Delusion podcast. Unfortunately it had to be cut by quite a lot to fit the available space, but you can read my original text below. It is largely based on a previous blog post with some added explanation.
My report starts at 15:17 in to the podcast. An MP3 file is available for download via The Pod Delusion website.
There have been lots of articles and blogs about things that are wrong with the Welfare Reform Bill, but strangely there doesn’t seem to be one complete list. Please comment below to help me create such a list and I will update this text as comments come in. The Welfare Reform Bill will
- Replace DLA with PIP, introducing a 20% budget cut and regular assessments.
- Limit contribution-based ESA for people in the WRAG to one year, after which people may only claim income-based ESA if their partner earns less than £7,500 per year.
- Reduce child tax credits (not sure how exactly)
- UC will not cover spare bedrooms in social housing.
- Charge parents for the use of the CSA after breaking up.
- Limit total household benefits to £26,000 per year. (Except when on high rate PIP?)
- No longer count disabled children as having paid national insurance contributions.
- Abolished the social fund, to be replaced at the whim of local authorities.
Since an article in the Evesham Journal has published the amount of benefits that I receive without any explanation as to why I receive them or what they are for, I decided to talk about it here. This is what my wife and I receive in benefits each week at the moment.
- £158.55 Employment Support Allowance
- £74.63 Housing Benefit
- £18.35 Council Tax Benefit
- £100.70 Disability Living Allowance
- – £105.95 Personal Allowance
- – £20.25 Enhanced Disability Premium
- – £32.35 Support Component
- – £49.30 Mid-Rate Care Allowance
- – £51.40 High-Rate Mobility Allowance
The ESA Personal Allowance covers my wife as well as myself. If I were not married then the Personal Allowance would be £67.50, however my wife does not claim Job Seeker’s Allowance since she is caring for me as a full time job. She has been told that she may still be required to attend a work focussed interview. She saves the council thousands of pounds per year in care charges by looking after me.
Our rent and council tax are not paid every week of the year. Total annual amounts are Band A Council Tax, £960, and rent for a one-bedroom housing association flat, 48 x 74.63 = £3582.24.
Disability Living Allowance is not a replacement for income. It is an extra amount to provide for care costs and to allow me to have some mobility by spending it on things like a wheelchair or a car. Our equivalent annual take-home income without DLA is £12,786.84 and with DLA is £18,023.24. If my wife were able to find a job as a science teacher then she would earn a salary of about £27,000 per year, which would easily make us better off after tax even without claiming tax credits, contribution-based ESA and DLA which we would still be entitled to. However, I would then need someone else to look after me.
I need to make it clear that although I am fortunate enough to receive full support for my illness and disability, a great many people do not. For an example, consider Sue Marsh who has one of the most severe cases of chron’s disease in the country. She has had 7 major life saving operations to remove over 30 obstructions (blockages) from her bowel. She takes chemo-shots every two weeks that suppress her immune system, and exhaustion, pain and nausea plague every single day of her life. She has osteoprosis and malnutrition. She has had major seizures and a stroke. And yet she was inexplicably turned down for Disability Living Allowance.
My claims for ESA and for DLA were difficult and were always in doubt despite my severe illness. It has taken me well over a year to sort out secure housing and income, and on the way to that my wife tried her best to take any and every job available. Although she is a fully qualified science teacher she was unable to find teaching work (even supply teaching) and so took work cleaning and cooking whenever it became available. Because of the sporadic and unpredictable nature of this work we were overpaid housing benefit in 2010 and 2011 and repayments for this are now taken from us every week. We were also evicted from our privately-let home possibly because of our sporadic rent payments, and just about scraped into social housing because of my illness and disability. My health is so bad at this point that my wife has to look after me full time.
With the advent of the Welfare Reform Bill and Personal Independence Payments which will replace Disability Living Allowance things will get much harder. I am much less likely to get PIP, and the process to find out will be hard and will have a negative impact on my health. Between ESA and PIP I am likely to be reassessed far more frequently and with much less chance of being awarded the help that I need. I am very afraid for my future and worried that I will be put into the Work Related Activity Group and have my mobility and care allowances taken away, simultaneously requiring me to work but removing the last bit of support which might allow me to do so.
I hope that by making this information public that I will add to people’s understanding.
Many of you reading will already know what I was doing on Saturday, but I want to get this written up anyway. So here goes.
My alarm went off at 6:30am. Being a chronic insomniac, it was pure luck that I had actually got to sleep by about 2am and so had had some sleep before hand. Strangely I find it easier to function after four hours sleep than after seven, if not for very long, and so I forced down a double dose of painkillers and coffee and managed to get washed and dressed – no small feat for me at any time of day. The I bundled myself into my powerchair and we were off.
First stop was a bus into Evesham. Karen and I walked/rolled to the bus stop and waited in the cold. Eventually the bus arrived (We knew it would be wheelchair accessible this time because Karen had phoned to check the day before) and we travelled twenty minutes or so into town. Then we had to go on half a mile from the bus station to the train station. I had pre-booked assistance to board the train but not tickets, so we went via the ticket office to buy the tickets. £74 of tickets, which went on credit. Protest is costly, in more ways than one. Trains to London actually depart from the other side of the platforms and my chair wasn’t going to go over the footbridge and so we left the ticket office and went around to the other side via the main road, which took a few minutes. After a few minutes wait in the very cold waiting room (people in wheelchairs are told to arrive half an hour before the train is due, as well as to book 24 hours in advance) the train arrived. Unfortunately when I found the car which I had been booked into, it turned out to be beyond the end of platform. The train manager looked a bit harried as we walked all the way to the other end of the train so that he could put us in first class where there was another wheelchair space. The next hurdle was that there was hardly any room to manoeuvre on the way in to the train and I got stuck trying to get past the luggage space. I had to get out of the chair and the train manager actually lifted it clear of the obstruction, all 90KG of it. Once we were underway I settled down with a coffee and tried to eat the bacon roll which we had brought with us, and I wrote a blog post to explain why I was protesting.
In London I got off the train after a brief delay while the ramp was taken to the wrong end of the train, and we made our way out to catch a bus to our meetup location. I must say that I am very impressed with the wheelchair ramps on London buses. There is a button next to the middle door to alert the driver of a wheelchair, and then after passengers have disembarked the doors close again while the motorised ramp is lowered. Then the doors open and allow the wheelchair to board, with plenty of space to get to the designated wheelchair spot. I wish these buses were everywhere.
We got to the McDonalds where we were meeting far earlier than we needed to but we started to bump into other people arriving for the protest anyway. I was pleased to recognise someone that I had seen at a march in Birmingham the previous June, and even more pleased when I realised that it was in fact
@pseudodeviant who I knew from Twitter. It turns out that we had met, and had been talking to each other online but not realised who we were! We were approached by John Domokos, a video journalist from The Guardian who interviewed us both about our reasons for protesting. The first of many interviews I would do that day. After a few minutes I met and talked to one of the organisers of our protest about our plan. The number of wheelchairs and other disabled people hanging around outside was making us a bit conspicuous so he suggested I go to meet up with another group a short distance up the road. I was really please to find people from UK Uncut waiting there to assist us, including some people that I had been talking to over the internet for more than a year but had never met. There was much chatting and smiling.
Then just before twelve we all moved off towards Oxford Circus. Volunteers from UK Uncut waited for the lights to go red and then ran across the Regent Street crossing with a chain, locking it at both ends. A line of people disabled people followed rapidly and took up their places along the chain. I was near the back of the line as I was waiting for Karen to return with food for me (I’m diabetic and had realised that I would miss lunch) so I rolled into place right at the end of the line across Regent Street, actually still on the pavement. We all locked on to the chain with D-locks and a cheer went up. We had done it!
After that events were hectic and a bit of a blur to me. Being on the end of the line I was the prime target for hoards of journalists. I did interviews with more than I can remember. I did pieces to camera, for podcasts and radio, talked to journalists scribbling notes, to people from the BBC, The Guardian, The Times, LBC, to more than one team from each of those. I talked constantly for two hours, and my head was spinning. I did a live piece for the One O’Clock news on BBC London radio. The noise of the crowd and the samba band was quite overwhelming and it was only adrenaline from the audacity of what we were doing that kept me going. In between the journalists I met people who I had been talking to on Twitter for months. A great many people seemed to recognise me, which frankly I found quite scary! I also was very pleased to meet Laurie Penny, if only for thirty seconds or so. Throughout the protest people from UK Uncut and others constantly checked if we were OK, offered tea and coffee, and kept us updated with what the police were saying.
I was quite impressed with the police, the Met were calm and pleasant and smiling, which was unexpected. They did pull up with sirens blaring, but then who doesn’t like a good excuse for blues and twos? Two police vans stopped in front of the line and blocked us from the rest of the junction and a row of police lined up in front of the vans facing us. Police did try to take down a banner that was being held across the Tube entrance, and there was a Met cameraman carefully videoing us all, no doubt for the database of protesters that they deny keeping. After about an hour the police made an announcement. I haven’t got a clue what they said, because it was completely incomprehensible, even without the sign-language interpreter that one of the other protesters asked for!
As we neared half past one it seems that the police were getting a little impatient. They informed some of our group that they would tolerate us if we moved aside to only block one side of the road, otherwise they would “take appropriate action.” I almost wish I could have seen what that appropriate action was, because I don’t think the police had any idea. No doubt they had disturbing visions of what the many journalists there would say about police dragging away people in wheelchairs, blind people, people on crutches. And it’s not as though their vans had wheelchair lifts or spaces.
By the time the police had made their feelings on this matter known many of us were quite cold and uncomfortable. This protest was extremely draining for most of the people involved. Although many of us wanted to stay until forced to move, the fact is that most of us could not, and so we all agreed that we would leave at 2pm. In the end it was really chaotic. We all unlocked from the chain and a speech was made, but then no one quite knew which way we were going. Some people had mentioned adjourning to a pub to get warmth and food but as no one knew which one that didn’t happen quickly. We actually ended up milling around in the road and chatting until the police started to look quite stern at about quarter past two.
On the way to the pub there wasn’t room on the pavement for all the wheelchairs, so they ended up in the road. We were in a walking pace procession right down the road in Oxford Street. Eventually it became possible to get on to the pavement but some stayed in the road and a few minutes later some police vans came speeding down the wrong side of the road and then crept along next to the crowd. Eventually everyone reached a pub and tried to cram inside, although it wasn’t possible for everyone in wheelchairs to get in. Several other people and I ended up in a pub next door for an hour or so before moving across to the first pub were we were finally able to get some food and seats.
We had a lovely time in the pub and I met yet more people who I previously knew only through Twitter. I stayed far too long for my own health but I had already condemned myself to days in bed in pain and not moving and this was a very rare opportunity to meet people and so I pushed through with help from copious painkillers.
Eventually Karen and I left the pub and returned to Paddington station. The train back to Evesham is only every two hours and we had more than an hour and a half to wait. We passed the time sitting in a coffee shop at the station and I began to zone out from exhaustion and the strong painkillers that I take. At this point the crowds and the noise of the station seemed like distant things and I was floating in a haze of opiates and tiredness.
When we went to find our pre-booked assistance for boarding half an hour before the train was due to leave the manager told us that Evesham station was unmanned after lunchtime, which we already knew, but he also didn’t think there would be any staff on the train who could place the wheelchair ramp for me instead of station staff. This caused me to panic a bit but the station manager called another manager who called the train driver who thought there might be staff on board after all. I went to board the train, which is where we discovered that the train did not have a wheelchair space at all. I eventually ended up blocking the door area with my wheelchair for the whole journey. I am quite surprised that the assistance booking line were not aware of the situation with the station staff, the train staff or the type of train. I was really uncomfortable so I moved to a seat next to Karen, and after Oxford I moved to an empty double seat where I tried to stretch out to relieve some of the pain. I crashed completely at that point with horrific burning and aching pain in spite of my double dose of painkillers. I was in so much pain that I was crying, and trying to hide it from the other passengers.
When our train arrived at Evesham sometime around midnight I had passed out from pain and exhaustion. Karen tried to get me to move back to my powerchair but was unable to wake me up. My memory of this is hazy but I know that I did stir a little and try to stand but could not, and I ended up on the floor of the train and then slumped across the arm of my wheelchair. I understand that a stranger on the train helped Karen to lift and drag me into my chair. Unfortunately when we arrived the ticket inspector could not unlock the ramp at the station. She had been given the code for the lock but it did not work. My family had come to meet me at the station to drive us home and so I was carried off the train into a manual wheelchair by my brother, mother and wife, apparently dropped near the edge of the platform on the way. They also carried my extremely heavy powerchair off the train. Between them my brother and my wife got me into the car and then from the car to my bed, although I was almost completely unable to move.
And so that is where we are now. I am still in bed at the end of Monday, 48 hours later. I have managed to visit the toilet a couple of times, and I eventually managed to change my clothes this afternoon, but I’m in a lot of pain and I can’t really do much. This is all completely in line with what I expected and I am doubtful if I will be spending any time out of bed before next weekend. This is what the protest cost me, what I knew it would cost me. All I can do is hope that the politicians notice and reconsider their policies.
This video is my personal update from Sunday afternoon.
This is my live interview with BBC London radio – 1pm 28/01/2012
You can find more links to news stories about our protest in this previous blog post Welfare Reform Bill protest news links
This is the email that I have just sent to my MP ahead of the Welfare Reform Bill activity in parliament this week.
Dear Mr Luff,
I am writing to you once again about the welfare reform bill, which as I am sure you know will return to the commons on Wednesday.
I have received your previous letter dated 11th January 2012 and I am sorry to say I feel that your response was inadequate. In that letter you assured me that the the changes to DLA are the result of one of the biggest consultation ever carried out by the Department of Work and Pensions; however I must inform you that the report which I sent to you and asked you to read proved without a doubt that the government had not only ignored the results of that consultation, but had completely lied about the results in order to claim support where there was none.
You may be aware of a protest that took place at Oxford Circus in London this Saturday just passed. I was one of the people involved in that protest and as a result I have been interviewed by LBC, The Guardian, The Times, The Sunday Times, and many more. I was interviewed live as the top story on BBC London Radio news. I can safely say that there is a lot of interest in our objections to this bill and that the people affected do NOT trust either Iain Duncan Smith or your government. If you care to look I have included links to many of the news stories on my own blog, a link to which is at the end of this email.
I have many objections to the Welfare Reform Bill. By the government’s own admission, the change to PIP will remove support from a great many people. The cumulative effects of this change, and other proposed changes, will be to leave people dependent on more expensive and more acute services. In the end this will cost the government far more than is saved, and will lead to people moving out of communities and back into care homes and institutions.
There are a great many other things wrong with the Bill but what is even more concerning is that way that the government has lied – and I use that strong word quite deliberately – and misled the public to promote their position. They have ridden on the back of scrounger rhetoric from the tabloids, rhetoric which Anne Begg of the Work and Pensions select committee said was being fueled by careless press releases from the DWP. I would go further and suggest that the DWP and the ministers involved are deliberately providing incomplete and out-of-context information to provoke these headlines such as “75% are faking” and other similar attacks.
In short, I do not trust the government, I believe the welfare reform bill to be an irresponsible, mean, penny-pinching and harmful piece of legislation that was drafted without thought or care for the evidence of its impact. I urge you to pause this legislation and review its impact, or at the very least, do not overturn some of the meagre efforts that the Lords have made to mitigate some of its worse effects.
Live interview with BBC London radio – 1pm 28/01/2012
My personal update on health and my journey home
You may recall last summer I made a video highlighting the difficulty that I had in getting between the village where I live and the local town in the electric wheelchair that I had been given by a relative. Following that video I was informed that a new wheelchair-accessible bus service would be starting up between the two places. Fantastic timing. However, since then, I have been quite seriously ill and unable to even go out in my wheelchair and I have been fortunate enough to have my father help drive me to medical appointments. Today I decided to take the new bus in to town for the first time since it started.
The new bus route 552 out of Evesham and it’s accompanying bus 553 which goes around the loop the other way are advertised as running low-floor wheelchair accessible buses on the timetables and when my wife spoke to Henshaws, the bus company the runs the service, she was assured of that fact.
Unfortunately this is what happened when I tried to board the bus today.
As you can see, it is in fact rather inaccessible for a person in a wheelchair.
The bus driver was very apologetic and tried to be helpful. She explained that the usual bus for that route was undergoing maintenance and that it had been substituted with an older bus for the day. She told us that the 553 which goes the other way around the loop was the usual accessible bus but would take a long time to arrive, and suggested that we could also try another bus that passes through the village, the 247 run by First Group. We decided to try the 247 but the bus stop for that service is actually at the top of the hill more than half a mile away. The 247 also does not use accessible buses all the time and so it was only a chance that I would be able to get on it.
Fortunately that bus was wheelchair-accessible. The bus driver helpfully told us that only his bus was accessible today and told us when we could get his bus back from the bus station. Here’s me on a wheelchair accessible bus for the first time.
So what should I take from all this? Well obviously things are improving. The introduction of a (normally) accessible bus service proves that people are making an effort, and hopefully by the target of 2015 all bus services will be accessible all of the time. However, at the moment travelling in a wheelchair is thoroughly unpredictable. If a bus needs maintenance, no one thinks anything of swapping in a bus that wheelchair users can’t get on. If there is someone in a wheelchair already on board the bus, then tough, there is no room for another one. Other people have told me about problems with getting people to move out of the wheelchair space on the bus, and in many areas the buses are decidedly not wheelchair accessible.
What is worrying about this is that with the proposed Personal Independence Payments under the Welfare Reform bill, it is assumed that because of accessibility laws there is no problem travelling as a disabled person now, and therefore disabled people do not need the extra money to help with travel that DLA provided. This is definitely not the case. Now that I receive DLA I have ordered a car through the Motability scheme and using that will get me to where I need to go reliably and on time, without the possibility of not being able to get my wheelchair into it one time out of ten, or suddenly having to wait for a different car. Clearly the world is not yet equal for disabled people and government ministers are deluded if they believe otherwise.
Myth: DLA can be claimed just by filling in a form.
Fact: Some people might only fill in a form to claim DLA, but decisions makers demand strong evidence to award the benefit. That evidence might come from the claimant’s GP, or consultant, or other specialist in their disability. It might come from an occupational therapist or social worker. Many people send supporting evidence with their claim form, but if they don’t the DWP will write to medical professionals and ask for it. If nothing is available, the DWP will send the claimant to a medical assessment – and they might well do that anyway. So the claimant might just fill in a form, but the decision needs a lot more evidence than that. Renewals may be treated differently.
Myth: DLA is awarded for life.
Fact: DLA is awarded for life ONLY if the disability is for life. Some cases are obvious. Missing limbs, progressive diseases. They don’t get better. They get worse. There is no point in repeatedly assessing people with such disabilities apart from to see if they have got worse, and in that case a simple letter asking the patient if they have got worse would suffice to determine who to reassess. People who have variable conditions or illnesses that might improve get awarded DLA for a limited time after which they have to reapply. In my own case I have been awarded DLA for two years, and more recently for five years. Not for life.
Myth: People on benefits get free cars.
Fact: People who are unable to walk or virtually unable to walk get the higher rate mobility component of DLA. This is worth about £50 per week. They can spend it to improve their lives however they wish. Many people use the money to buy a wheelchair or a car. There is a scheme called Motability which is run by a charity, NOT the government, and people who receive high rate mobility can choose to lease a car or a wheelchair through them, paid for out of their own DLA.
The Motability scheme (remember, paid for by people who use it) purchases new cars and leases them to its customers. Most customers pay the entire £50 per week of their mobility allowance to the Motability scheme for three years to lease the car. That is £7,800 in total. At the end of the lease the car is sold. If the payments and the sale price together are not expected to match the purchase price, the customer pays the difference in advance. So it is perfectly possible to have a high end car, but unless it has a high resale price, the customer could be paying hundreds or thousands of pounds extra for that lease. And they don’t get to keep it.