Blue Badges For People Given Wheelchair Prescriptions

 Guest blog from Helen Page

I recently lost my DLA higher rate mobility and was therefore unable to renew my blue badge. This has left me really struggling - just weeks after receiving a wheelchair from my local wheelchair service. I could try and apply but would have to go for a medical and reading the criteria I wouldn't qualify. Basically because I can walk across the carpark I can't have a blue badge, even though if I can't walk around the shop.

Already this has meant that my husband has had to push me half way across a stone carpark and when I go to guiding events I won't be able to park near to the entrance so I won't be able to use my wheelchair. On a trip to Filey I was unable to park where I wanted to be which meant I couldn't spend time with my kids in the way I and they wanted. Absolutely barmey when you consider that just over a month ago I received a prescription and voucher for a new wheelchair! The wheelchair had to sit in the car because I had to climb down steps and the extra painkillers I had to take as a result have caused 2 days of side effects.

It's crazy enough that I have lost my DLA mobility which has caused me considerable stress and has meant my parents have had to purchase me a new car but losing the blue badge has been a nightmare. The decision is a farce. They didn't write to my GP initially and when I asked for a reconsideration they contacted my GP asking her to comment on my dementia presumably because I have written about my memory problems. I'm 29 years old so it's fairly clear I don't have dementia i'm sure. To top it the letter saying there would be a delay as they wrote to my GP was addressed to the wrong address and was luckily found by one of my Brownie mums in the flats nearby which have half the same name!

Addressing the blue badge situation I have created a government e-petition as it seems totally ludicrous to me that you could be given a wheelchair and not be given a blue badge. It appears that in Scotland that I would have been given one so it's not an unreasonable request. If you'd be able to sign it it would be much appreciated.

http://epetitions.direct.gov.uk/petitions/32844

Paul's #DLA Story & #PIP Fears

In all the political posturing and chest beating there has been a lot of talk about Disability Living Allowance. Most of it’s ill informed and often misleading. Cabinet members who should know better keep referring to it as a benefit for unemployed disabled people and how it’s rife with fraud (actually 0.5%, much lower that DWP’s own error rate). What DLA actually is, is a benefit that goes some way to covering the additional costs of being disabled and can be claimed, working or not. For a lot of disabled people, DLA is the thing that actually enables them to work. The planned 20% cut when it migrates to Personal Independence Payments (PIP) will mean significant numbers of disabled people losing out and, in some cases, having to give up work. An exceptionally retrogressive step.

I get DLA. I get the middle rate care and higher rate mobility. These help me cope with the additional costs of being disabled and help keep me able to work.

This is quite hard for me to write as it’s going to contain some very personal information. That’s why it’s not written in my real name as I’m not ‘out’ about everything here.

I was born with Spina Bifida, a disability caused by the spine and spinal cord failing to form properly before birth. I’m ‘lucky’, my spinal damage is relatively low down and I didn’t get Hydrocephalous which is a common condition with SB. Despite that, I’m fairly disabled and had to endure a significant amount of surgery to keep me functioning. Forty surgeries in 44 years. One of those operations was to amputate my left leg below the knee due to damage caused as a result of the reduced sensation that SB causes.

So that’s the damage, now for the effects:

·         Walking: I can walk after a fashion but it’s painful, tiring, gets me out of breath and it’s almost impossible to carry anything. Only being able to walk a short distance means I can’t walk to the bus stop or the corner shop. I can do it if I really try, the same way an able bodied person can do a marathon but, like a marathon runner I couldn’t do it two – three times a day every day. Getting the higher rate DLA means I qualify for Motability, a scheme where I give up my mobility component as the payments on a lease for a car. This means I have safe, reliable, accessible transport so I cna get to work, go shopping and even socialise like any non-disabled person. This isn’t about choice, preferring the car over public transport. This is about being able to make the journeys I need to in order to live a ‘normal’ working, productive life. It also means I qualify for a blue badge for parking. For me this is twofold. Firstly it means I can park nearer to my destination, reducing the walking. Secondly, because of my prosthesis I need to be able to open the car door fully to get out. The wider disabled spaces mean I can do that. Sometimes when people have parked too close (but within ‘normal’ parking distances) I’ve had to trust a stranger to move my car enough so I can get in. These are just the problems when I can wear my prosthesis. When I can’t I have to use crutches and things become much much harder. I also have appalling balance and trip and fall frequently.

·         Standing: The same issues that affect my walking also affect my ability to stand. The imbalance in my hips, differing leg length and spinal curve mean that standing gets painful within a minute or two. This makes waiting for public transport excruciating.

·         Damage: One of the lesser known ‘hazards’ of disability is the damage it does to your clothes. The upper edge of my prosthesis wears my trousers through at the knee in three to four months. The limited flexibility of the heel destroys socks and the insoles of shoes. If I don’t get my trousers altered to allow for the differing leg length then the prosthesis heel destroys the hem too. My gait (Trendelneburg for those interested) means I flex shoes to breaking point, scrub the soles as I walk, and catch the toe as I can’t lift my foot as I swing through. This means I get through shoes far faster than someone without my gait.

·         Continence: The big one, something I keep private and try to cover up all the time. The level of damage to my spinal cord left me doubly incontinent. As a result, I had to have a colostomy when I was 7 and an artificial bladder sphincter when I was 25. Two massive operations that damaged my stomach muscles.

When it works, the colostomy is fine. However it’s not always reliable and you never know when it will leak. As a result I have to take a change of clothes, a wash kit and spare bags with me almost everywhere I go. As I said above, carrying stuff is really difficult. This is where the car helps as I can leave this in the car most of the time. It’s normally fairly close to where I am and I can get the bag and sort things out easily. Should I lose my car I’d have to:

o   wait for a bus,

o   get on it without having been able to clean myself up and endure the stares and comments of other passengers,

o   walk home still reeking and in extreme discomfort,

o   get changed,

o   walk back to the bus stop,

o   wait for the bus,

o   Finally arrive back at work.

Assuming a not unusual 30 minute commute, this could take between 1 ½ to 3 hours depending on timing and bus frequency. It also assumes I don’t get thrown off the bus. Having my car means being able to sort things out in 15 to 20 minutes maximum. It means I can go to work knowing I’ll be able to put in a full day.

While the bladder sphincter gives me improved urinary continence, it’s only about 70-80% effective. Coughing, sneezing, lifting and laughing all make it fail. As a result I wear a leg bag. Like the colostomy, this can and does leak. These failures are unpredictable and usually involve a change of clothes. As above, the support the DLA gives me enables me to live a more productive life.

These leaks can happen at home too, often in bed which means trying to strip the bed in the middle of the night and ending up sleeping on a towel as I can’t make the bed again. If I bag laundry up and drag it, I can get it in the machine but hanging it out, bringing it in; folding/ironing it is extremely hard work due to my balance and standing problems. If I’m unable to wear my prosthesis (which happens fairly often) then this is effectively impossible. I pay someone to help me with this and remake the bed or I’d not get it done. As you don’t want soiled clothes hanging around I also do far more loads in the machine than average which costs more and also shortens the life of the clothes. Yet more disability specific cost.

·           Energy: All of the above takes an estimated 150% of the energy it would take a non disabled person. I can cook from scratch but don’t always have the energy/balance to do so safely so I have a stock of ready meals. These are more expensive than using raw ingredients which is my preference when I don’t have to preserve my energy for going to work.

This is just a taste of the key issues in my life and the stuff I have to manage to keep as functional and productive as possible. The support that DLA and associated services provide are cornerstones of enabling me to work. If the proposed PIP test goes through unchanged, there’s a chance I’d lose it all. This would severely hamper my ability to work, exactly the opposite of the Government’s stated aim.

There’s also been a lot of talk about disabled people being awarded DLA for life and how there should be regular medicals to check if they are getting better. My award was for life as SB doesn’t get better. It only gets worse as your body ages and the wonky spine and uneven muscles take more and more toll on your joints. This was before I became an amputee. Now, there’s even less chance of me getting ‘better’ as, as far as I know, there’s no record of limbs regenerating in humans. The politicians argue that reassessing me would tell me I’ve not been dumped on a shelf and been told there’s things I can’t do. I know that anyway. I work, I’ve studied, I’m involved with my community. I do what I can within my limitations and DLA is one of the things that enables that.

Those making policy have a slim grip on the reality of the issues involved and they took a cavalier approach to the consultation on the changes proposed. They ignored all the responses from disabled people’s organisations and only took a cursory look at responses from individuals. The DPO’s responses were measured, evidence and experience based. We know the system isn’t perfect, we know it needs some reform, but it needs to be reasonable, evidence based and not set the lives of disabled people back 30 years or more.

This has been a hard post to write and I’m sure I’ve forgotten issues that I just get on with everyday that take longer or cost me more. When you see someone talking about PIP or DLA, remember it’s not just about the obvious impairments. It’s about the hidden ones and all the knock on issues that all these impairments bring.

The Hardest Hit Protest, Leeds

Last Saturday thousands of ill and disabled people, their carers and supporters took to the streets in cities across the UK to protest against the cuts that are unfairly targeting them. This unprecedented event was The Hardest Hit October Action.

It takes a lot to make the disabled community take to the streets, mainly because its so difficult for us. If you had eavesdropped my twitter feed last week you would have seen my conversations and musings dominated by The Hardest Hit as we all shared protest survival strategies. We knew there would be a price to pay in our health for attending but as one of my friends put it, "protesting will hurt me but not protesting will hurt me more". 

For every one of us attending an event there were hundreds who were unable to go because they were too ill or disabled, too poor, too busy caring for someone or just couldn't use our inaccessible public transport. They sent messages of support, they were with us in spirit. 

I'm not an activist or a disability campaigner, I'm just an ordinary person struggling with some pretty serious mental health problems. I am, like most other ill and disabled people, one of the hardest hit by the cuts.
I travelled to Leeds to join the Hardest Hit protest because this Government wants to stop my benefits, remove my services, call me a scrounger and force me from my home. For many of us this protest is personal, we're not just fighting for fairness - we're fighting for survival. 

Over two hundred of us gathered in the sun in Leeds. We marched along The Headrow bringing the city centre to a standstill. Shoppers stood and watched as we marched with our wheelchairs, our Assistance Dogs, our mobility scooters, our carers, our children, our friends and our banners. Speeches were made by disability activists, charity sector workers, trade union members, NUS members, a local MP and ordinary people facing huge challenges. The message from all of them and the people listening was clear - these cuts are unfair, we are afraid and we are angry. 

There is a 'perfect storm' facing ill and disabled people. We are already struggling to survive from day to day. Our NHS services are being cut and the voluntary sector agencies who would offer us support are losing their funding. The benefits of those of us who cannot work are being cut or removed and those of us who do work are losing the practical and financial support necessary to make working possible. The additional cuts proposed in the Welfare Reform Bill will leave us and our carers more impoverished, isolated and vulnerable. On top of this, ill and disabled people are being labelled as scroungers and benefit cheats, vilefied by the media and treated with suspicion by the public. Disability hate crime is increasing, people are facing abuse and harassment on a daily basis and many are afraid to leave their homes. 

This Government has promised to support disabled people who are in genuine need - but only if THEY can define 'support', 'disabled', 'genuine' and 'need'. This is a cynical disability denying ploy to remove support from the people who need it. This Government is merely transferring funds from ill and disabled people and carers to private companies making millions from 'welfare reform'. 

One of the most disturbing things is how badly informed most people still are about this. The public still think that disability benefits are a 'lifestyle choice' and believe we are all driving around in BMWs. Sadly many disabled people and their carers are still unaware of quite how badly the cuts will affect them. The media is not listening to the disabled community, some of the Hardest Hit events attracted over a thousand protesters but there was barely any BBC television or radio coverage. The future for society's most vulnerable is bleak. We are 'all in it together' its just that some of us are deeper in it than others. 

Attending the protest left me with mixed feelings. I was proud to stand in solidarity with the hundreds on the streets of Leeds, the thousands in cities across the UK and the tens of thousands who were there in spirit.

But I was also sad and angry that this country should need an event like The Hardest Hit at all.

Guest Post by Vanessa Teal

Hardest Hit protests Today.

Today, up and down the country, sick and disabled people will be taking to the streets to raise awareness of the issues facing them in a series of "Hardest Hit" events.

After the brilliant success of the previous march in May, do please try to get along to your nearest rally. It was the largest protest of sick and disabled people in UK history.

Details of your local protest can be foundhere  http://thehardesthit.wordpress.com/octoberaction/

And if you can't actually attend physically, there are lots of tips and suggestions here  http://thehardesthit.wordpress.com/

Do please try to get along. Whether you are unwell, disabled or simply an able-bodied supporter, horrified by cuts that are leaving people terrified and desperate, please show your support.

For anyone who might be interested, I will be on Radio 5 Live tonight at 11pm discussing the events and the wider issues that make them necessary. It's a call-in show, so if you want to join the debate, I'd love to hear from you.

(Posted by Sue Marsh)

BBC Radio Merseyside

DLA and PIP discussion about the findings of the Papworth Trust's survey featuring yours truly, listen again here. Relevant section starts approx 19min 30 seconds.

BREAKING NEWS! DWP Admits Dodgy Data Use

On the same day the UK Statistics Authority say the DWP must improve the way it presents data on disability benefit claims the DWP is forced to admit that it based sweeping disability reforms affecting hundreds of thousands of sick and disabled people on dodgy data.

Anne Novis, MBE - Issues with BBC Breakfast Show interview #DLA #TBofB

I was interviewed by the BBC for the Breakfast show on DLA linked to the Disability Alliance initiating legal action re the consultation on DLA.

The crew came to me and did a long interview and filmed aspects of my home that indicated extra costs I had as a disabled person.

All well and good a great interview and interested journalist.

Then late in the day a man phoned from the BBC asking if they could use some of the interview on the BBC news, he asked me questions about my impairments which I declined to share publicly as I have multiple health issues as well as a spinal condition.

He asked how much I received in DLA so I explained about the two components and that my Mobility fund was spent on a wheelchair adapted car leased via Motability and that half my high rate care component was taken in charges for Independent Living Fund support for care so in reality I receive only £125 per month.

So I was shocked and surprised to hear him state I received this per week!

Also my surname was not pronounced properly , it became ‘Nevis’ not ‘Novis’ and the MBE I received this year was not noted on my name as it was in the morning.

Although he stated I had a spinal condition he did not state I had multiple health issues too.

It seemed to me the stance of the piece shown was different from the Breakfast show piece and so much was left out of my interview.

I had explained about the multiple impact of all the cuts on disabled people, the closure of the Independent living Fund, the anxiety caused to so many due to lack of appropriate consideration of our views on the proposed changes to DLA.

It seemed in the morning the genuine concerns of disabled people were to be heard but by the evening I became a burden too far as Maria Miller and the tax alliance focused on misuse and how ‘unsustainable’ DLA is, also the ignorance of disabled people not understanding the government stance which is oh so clear these days was also the focus by Maria Miller.

We have to ask why the approach to this information changed from the morning sharing real concerns and anxieties to the evening where the focus seemed to be more on disabled people expecting too much.

Anne Novis, MBE

Project V - (In)Voluntary Work

Final Call for DLA Consultation Submissions

There is little over a week now to send me your own contribution to the joint The Broken of Britain/CarerWatch submission to the consultation on DLA reform: rhydian@thebrokenofbritain.org

The submission will be sent off on the 10th of February by special delivery, to be certain that it arrives at the DWP by the 14th of February closing date. I will make every effort to include all evidence that is sent to me, or posted on the relevant threads in The Broken of Britain and CarerWatch forums. Having said that, please try to ensure that the evidence reaches me by the 7th of February at the latest so that I can edit the final document in time. To find out how to help me with preparing the document, click here.

The blog post below is written by Tony of the West Yorkshire branch of the Huntingdon's Disease Association. He has prepared his own submission to the consultation, and it is posted here to give you some ideas. The Broken of Britain/CarerWatch submission is being written on behalf of people who don't have the time/energy/inclination/spoons to write their own, but if you can and are confident in your ability to write, I urge you to send your own submission.

Huntington’s Disease and the proposed PIP 

HD is a genetic condition, if you had a parent with the condition there is a fifty - fifty chance you will inherit it yourself. The disease usually strikes in early middle age and involves a progressive physical and mental decline. The most pronounced symptom is the one that gave the disease its old name of Huntington’s Chorea, choreatic movements being uncoordinated and jerky. The cognitive symptoms can be many and varied and differ from person to person, as can the level of disturbed movement, the overall outcome however is always without exception an inevitable decline and death. My partner is at risk of developing the illness, her brother already has it.

Is the ‘Social Model’ of disability up to the job?

The proposed new Personal Independence Payment(PIP) will it is stated, rightly take account of the social model of disability but that model was never intended to be a universal one, there are some people with deteriorating neurological conditions such as HD for whom the social model just does not suffice. People with HD will usually have had jobs and been useful active members of society, it is their progressively worsening medical condition that has lead them to lose those jobs and to require help with their mobility and care. Of course the government should assist them to remain in employment as long as they are able but for the most part we are concerned here with people too ill to be capable of any employment. The ‘barriers’ they face are as much medical ones as social.

Is there a role for a new ‘PIP’? 

Where a PIP could have a role with regard to HD is through those people who are at risk of developing the condition. Imagine what it feels like to spend every day of your life wondering if you are going to inherit the illness that you have already seen kill your father or mother? There is a genetic test but as to be tested positive is to receive a death warrant with only the date left blank many choose not to take it. Because of the stresses the disease causes therefore, families of HD sufferers should be entitled to receive help from psychotherapy services currently almost impossible to secure on the NHS. The children of sufferers may need extra tuition to compensate them for missing school due to their caring roles. Such examples are legion and are demonstrative of some of the ‘hidden’ barriers people from HD families face in society currently, for which they receive no help.

The problem of individual assessments

With regard to personal or individual assessments of eligibility; the question has to be asked, what good purpose can this serve? The progression and prognosis of the disease are well known and not subject to massive variation. There has been an assumption, based on sound experience in the past that individuals with HD will have specific needs and the prognoses for the illness have not changed.

Having to undergo eligibility tests for any benefit is particularly problematic for HD sufferers for two reasons connected to symptoms of the disease. HD sufferers are prone to anxiety and obsessive behaviours and the two issues have an unfortunate tendency to come together around issues of benefit applications; many HD sufferers become extremely anxious that they will somehow ‘fail’ an application, and indeed they can become obsessive about it, feeding their anxiety in a vicious circle of behaviour that is incredibly distressing both for them and for relatives caring for them. The language of individual assessments is fine no doubt in many contexts but for some such as those with HD it is the prelude to a living nightmare that can not only ruin day to day living for weeks if not months, but may also through the stress involved actually worsen a person’s symptoms.

There is another reason to be very wary of individual assessments in the case of HD and that is that the condition often carries with it symptoms of denial, this is an organic aspect of the condition known as anosognosia and not ‘merely’ a psychological refusal to acknowledge symptoms. Victims of HD often simply cannot see that there is anything wrong with them; they will indicate that they can perform all sorts of tasks that are in fact way beyond their capabilities, if this is not a potential disaster area of botched assessments and time wasting appeals then it is difficult to conceive what is.

Does the PIP impose its own barriers?

It should surely be a goal of a non means tested disability benefit in a civilised society to ensure that claimants have a standard of living that allows them to live their lives in at least some comfort similar to their non-disabled neighbours, this is after all what the social model of disability is ultimately about. The current system of DLA allows for this in the case of HD sufferers, the proposed PIP however is far too narrow in its view of disability. There is for example little point in compelling sufferers to seek advice from anywhere as the only source of help for them in reality is likely to be the medical professionals they will already have been in contact with.

Finally; there is a danger within the consultation document, hidden but not entirely concealed that in introducing the PIP the government are doing exactly what they claim to be trying avoid namely placing barriers in the way of some disabled people achieving a moderate standard of life and stigmatising some disabled people who do not fall so easily into the paradigm of disability the DWP has decided it wants to help. Sometimes ‘focusing on the individual’ can become the language of the bully, the focus turns out to be intimidating, unwanted and unnecessary.

Friendly Neighbourhood Grammar Nazi's Story

I was born with a connective tissue disorder called Ehlers-Danlos
Syndrome. I also have multiple secondary conditions - Fibromyalgia,
Irritable Bowel Syndrome, Postural Orthostatic Tachycardia Syndrome,
Depression, Social Anxiety, and possible but undiagnosed ADHD-PI and
Aspergers. The EDS was a recessive gene in my family and had not been
seen for two generations. The last person to have it was my paternal
great-grandmother, who was undiagnosed until it was too late. As a
result, nobody recognised the symptoms that both me and my sister were
showing practically from birth.

We were clumsy, we had late (physical) developmental milestones, we
were constantly covered in bruises and scrapes and scars and had no
idea how we got each of them as they were so common. We were in pain
but unable to express where or why. When everything hurts, it's
difficult to give specifics and when you don't understand that
subluxations (partial dislocations) exist, all you know is that it
hurts and feels 'wrong'. When children give such vague answers people
assume they're making it up for attention. We were told over and over
that everybody gets aches and pains and it was perfectly normal. When
we didn't want to do things that the other kids did (running and
playing games of tag etc) we were told that we were being lazy and
antisociable.

These things were drilled into me from such a young age that I
believed them. I pushed myself past my limits trying to be 'normal'
and do 'normal' things. When I reached puberty my health dropped
dramatically due to the extra stresses on my body. The pain grew and
my cognitive functions began to slip. I was being abused at home by my
mother and bullied at school. Every authoritative figure I tried to
speak out to agreed with all the previous ones - I was lazy,
antisociable, rebellious and awkward. I had an 'attitude'. I could no
longer concentrate on my work. I was depressed and in chronic pain.
Every moment of every day was a struggle for me. I lost the
scholarship I had at one of the top private schools in the country as
I could not bring myself to concentrate any longer. I have always
loved to learn, I have always had a thirst for knowledge that has
never been quenched, and yet when I could no longer do my schoolwork
and I reached out to ask for help - I was just being lazy. I wasn't
trying hard enough. They knew I could do better if I just tried. Why
was I being so awkward? Why did I have to turn into such a rebellious
teenager?

I finally got a doctor to listen to me. But as a young female with
obvious mental health problems he diagnosed me with depression and
stress, writing off all my physical symptoms as aspects of these. He
gave me antidepressants and sleeping pills and sent me on my way.
Neither of those did anything for me but he continued to insist that
all my problems stemmed from stress and depression and piled more
pills on me. He also gave me a note to give to my teachers to get me
out of any trouble I might get in from not doing homework etc. The
first (and only) teacher I showed it to screamed in my face that I had
no idea what it was like to be stressed. She was a TEACHER. SHE knew
stress.

My health continued to deteriorate. Some days I was in so much pain
and so exhausted that I couldn't get out of bed. I played 'acute' sick
to get out of school. Nobody ever believed me. I hated myself for
doing it - I loved school, but was too 'lazy' to get up and go.

When I was at school, I would hide in the toilets to get out of having
to do PE. I would spent the entire lesson crying quietly to myself in
a cubicle, hating myself and feeling so ashamed for not being able to
do it. When I was caught and forced to do it, they tried to make me
run laps as a punishment for skipping the class. I'd sublux an ankle,
without realising what I was doing, try to run on it, but fall flat on
my face. My teacher dragged me up and pushed me forwards. No matter
how many times I fell, he would keep doing it as he 'knew' that I was
only faking it and he wouldn't tolerate my laziness.

I had no social life. Everyone at school laughed at me for faking
illnesses, for having so many days off sick. They made fun of me when
I tried to join in PE. They snickered behind my back during tests when
I was trying so hard to think straight that I was practically in
tears. They poked me, hard, and due to Fibromyalgia even soft pokes
hurt, then laughed at me when I screamed in pain. I was so
melodramatic, they said. They threw things at me, which left me in
tears and with huge bruises. I tried to show people the bruises, but
they insisted that I was such an attentionseeking liar that I'd
bruised myself to try to get others in trouble.

In short, my childhood and teenage life was hell. My mother abused me
at home. I was bullied at school. I had no friends and nowhere else to
go. I would lock myself in my room by sitting with my back against the
door so that my mother couldn't come in and get me.

At 16 years old, I moved out. As soon as I was legally able. I was too
young to claim any benefits. I was told that if I was still living at
home at 16 I could claim JSA, but having moved out I wasn't entitled
to it until 18. I had to work full time to afford rent. My body
couldn't take it. I had as many days off sick as I had at school and
that was too much to be able to hold down a job. I bounced from one
meaningless job to another, under constant emotional and mental stress
of not being able to afford rent and being terrified that I would have
to go back to the mother and enduring more years of abuse.

I had online friends at this time as I had discovered the joys of the
internet and how much friendlier people were when they didn't see you
faking your way out of physical jobs on a daily basis. I met up with
one of these friends in real life and we ended up falling in love
after that. He knew about my situation trying to make rent, but not
about any of my physical problems. I was still far too ashamed about
my own laziness and the lies I came up with so I wouldn't have to do
things.

He convinced his mother to let me move in with them for a VERY low
rent and when he made me the offer I happily accepted. It meant moving
about an hour and a half away from where I was but I was giddy with
excitement nonetheless. It took me a while to find a job in my new
town as I had no 'local experience' and a pretty poor work history of
jobs changing every couple of months. And no qualifications other than
very low GCSE grades. But my boyfriend was happy to continue paying
rent for me out of the JSA he was claiming.

A while later we moved out of his parent's house into a nearby flat.
My boyfriend had a full time job and I was using all my energy to keep
the house clean and applying for roughly 20 jobs a day. Whatever I
could find that I might possibly have qualifications and experience
for, I applied for. Anything that didn't require any experience or
qualifications, I applied for. It still took me over a year to find a
job. By that time I was 18 and would have been eligible to apply for
benefits, but I was adamant that I wasn't THAT lazy and when I was
offered a data entry job I took it. It only lasted a few months as my
typing skills were too good. I was too fast at it and ran out of work
for them to do. I had been clearing up an eight-month backlog.

I found another job fairly quickly - as an audio typist/medical
secretary working in mental health. I was quite pleased with this as
it was an NHS job, had good prospects for promotion and a career etc.
I'd started to feel twinges in my wrists and fingers when typing for
too long, and dealing with 'writer's cramp' but I figured this was
fairly normal. I walked the half hour to my job and back every day,
despite how much it pained me to do so. I kept telling myself that it
was exercise, and like everybody kept telling me - I was just lazy and
if I exercised more things wouldn't hurt. I kept telling myself this
over the next few months as the daily walks got more painful and the
typing left me unable to use my hands for the rest of the night after
I came home from work. Surely I would get my second wind soon. This
would start getting easier.

I started longing for the weekends - not so that I could go out
drinking with my friends as everybody else my age was doing, but so
that I could spend two whole days in bed without having to move.

I took more and more days off sick from work so that I could lie in
bed and rest. My life consisted of working and resting, there was
nothing else. My boyfriend had to force me to eat in the evenings
because if I was left to my own devices I wouldn't bother - it was too
much effort and too painful to bother with.

I was in such agony from my wrists, hands and fingers that I had to
take breaks every five minutes at work. It was five minutes of typing,
ten minutes of resting, repeat all day long. My work started to suffer
but I had been so good at my job that I was ahead of myself anyway,
nobody really noticed the drop.

I kept telling myself that it would get better and I just had to work
through this. That everybody else was working full-time without
anywhere near as many breaks as me, AND managing to do housework and
have a social life. That if I couldn't even work full-time without
taking at least one day off sick a week then there was something wrong
with me; I WAS as lazy as everybody kept telling me I was.

It didn't click that maybe my problems were more physical until my
boyfriend tried to hold my hand once, on a bus full of people, and I
burst into tears because the act of holding hands was hurting me so
much that I could no longer wear my happy face even in public.

I went to the doctor at that point, who started investigations and
advised me to stop working. I couldn't bear the thought of being even
lazier than this and having to claim benefits, so I continued working
despite the agony for another three months. By that point I'd done so
much damage to my wrists that they will never be the same again. Us
EDSers don't heal very well. I can still type to some extent but I
need to take far too many breaks for far too little writing and what
little I do stops me being able to do any other kind of work.

All of my joints hurt. All of my joints sublux and dislocate. I can't
walk very far, on days when I can walk at all. There are very, very
few activities I can do with bad wrists. When 'normal' people injure a
joint they rely on other joints to over-compensate. My upper body
cannot compensate for my lower body's problems. I can't use a cane or
crutches or self-propel in a wheelchair because of my wrists. The NHS
won't give me a power chair. I'm housebound until someone has the time
to push me around in my manual chair.

My cognitive problems and inability to concentrate coupled with social
anxiety and trouble communicating mean that claiming benefits is a
harrowing, terrifying ordeal for me. The physical problem of not being
able to fill in the forms myself is the least of my problems. The
errors in the system of lost claims and bank account numbers and
countless problems where they don't even know what the problem is
overwhelm me. I'm unable to use a phone without crying and having
panic attacks most of the time. Anytime anybody questions me about my
abilities I break down - it's so unbelievably hard not to scream that
I'm a lazy piece of scrounging scum. I put off doing things that need
doing because I don't want to cope with the tears and the break downs.
I then forget that they even need doing until the next time I dare to
look at my bank account and break down worrying and crying about how
to pay rent and buy food.

I am currently on low rate care and no mobility of DLA, despite
needing help with pretty much all my daily activities and not being
able to walk most days and only as far as the corner shop on the days
when I can (pointless, as I can't carry any groceries home). I tried
to claim ESA but failed their medical assessment with only 9 out of 15
points. I had a look at the points system online and by my
calculations I have a combined total of 72 points from both physical
and mental problems but they would only give me 9 points for not being
able to use a pen. I'm trying to claim housing benefit but am
wallowing in bureaucratic nonsense that I don't know how to handle.

I am living in poverty. I have always lived in poverty except for that
one year when both my boyfriend and I were working full-time. That
year was such a living nightmare for me that I couldn't even enjoy the
financial benefits of being able to afford take-away when I couldn't
manage to make myself food. I'd rather not eat but live in a world
that consists of slightly more than just pain and sleep.

Ned's Story

My son has complex care needs and has profound learning and severe physical disabilities.  As he's non verbal, I have to do this on his behalf.  Part of the time he is in registered care and receives Mobility Allowance.  He uses this to fund his wheelchair adapted vehicle - for hospital visits, coming back to us and social visits.  Because he is officially classed as in a 'nursing home' this is one of the few benefits he is eligible for - no Income Support etc. (we've checked all this out with welfare rights).  Mobility Allowance will be withdrawn from him under the governments Spending Review.  At the same time, the local council has withdrawn the 'Dial a Ride' scheme for lack of funds, so he will effectively be under house arrest as a result.  We've also just been told that because his existing care package is expensive it is being reviewed - it's expensive because he is very disabled - oxygen, gastrostomy, nursing care etc..

These cuts are real and affect real people, some of whom can't argue back themselves.  I do my own blog at http://nedluddcarer.blogspot.com/

Sam's Story

A brief background first, just so you know where I am with all this. I'm a 24 y/o guy with EDSIII, Autonomic Dysfunction, (unconfirmed) Marfan Syndrome (family history of it, I need more tests done), Anxiety and Bipolar II. All of these diagnoses came pretty quick one after the other in the space of about 18 months from July last year. I've always been one of those accident prone, clumsy, forgetful people. When I was growing up, it was always "growing pains" or "hypochondriac" but my body (from neck to lower back, chest, arms, legs, etc) is covered in scars. Although I have scars everywhere, my skin is still incredibly stretchy, soft, and smooth, like a silky bread dough. My condition has been unknown to me for most of my life, I've just had to get on with everything and struggle which made me very stubborn. However, since I hit 20/21, I've been deteriorating rapidly and haven't been able to physically fight it like I have been. Now I'm 24, I'm very close to giving up and letting it win.

My ordeal trying to get DLA has been a nightmare. Since I was 9 I've been using crutches as I had really weak ankles (dislocations) as well as a fused talus joint in my right foot. I have had virtually non-existent mobility for about 15 years, but I refuse to use a wheelchair as they cost too much for me and I don't want to be restricted further. But as it was only a "unresolved injury due to flat feet and weak ankles" there was nothing I could do. With the diagnoses I got last year, I made the jump to claim for DLA. After help from the welfare department at my district council, CAB and my doctors, even after tribunal I am only eligible for lower care, which personally I find atrocious and as though I've had dirt kicked in my face.

I have worked since I was 16, on and off for the local government and have volunteered for my local community (as well as finding time for A levels and MCAS qualifications). I have been self-employed (briefly) as a graphic designer when I was 18-20, however my health got the better of me and had to stop, as there was too much stress and I was physically getting worse. I went back to the local gov offices doing temp jobs until I finally got a permanent position with the County Council as a Pensions Officer, in the support team helping with systems administration for the department. I have been there about 2 and half years now and I like the job (although my work load had to be reduced due to my illnesses, mood fluctuations, etc) but unfortunately I'm still deteriorating (knees, back, neck and hands mainly) and I have been signed off long term sick. That's my history in brief, my EDS, AD and preliminary Marfans diagnoses were done by Prof Rodney Grahame at UCL with my Anxiety and Bipolar II, this september by Dr Bansal at the local psychiatric centre here in town (after many cancellations and referrals over the space of about 5 years).

I have been off sick now nearly half a year and obviously as my SSP ran out many moons ago (thanks to my abysmal sickness record) I have been claiming ESA. Last month, I think it was 11th October, I had a medical with ATOS. This medical was terrible, which consisted of a "doctor" sitting at a desk, tapping away slowly at a computer. She did some very strange tests to see how I can move (which, as you know from your own experiences, is extreme!) however, I was forced to perform certain things or be marked as "refusal to co-operate" this included bending at the knees and reaching above my head. Both actions caused me great discomfort (extreme pain from the knees, as they're so loose now they have no strength in them at all. As well as tachycardia from reaching thanks to AD) and when I got home, a panic attack. However, on receipt of my results, I scored 0. So even with crutches I can "comfortably walk 200m", with my anxiety and bipolar "cope with difficult and stressful situations and meeting new people", but I could go line by line through the report with how it's wrong. The sad thing is, I had already anticipated this from what I had heard previously about ATOS.

The most shocking thing I found, was when I was on the phone to DWP to ask about appealing, when I explained "I have received my ATOS medical report" the lady on the end of the phone asked for my address to send out the appeal forms without me asking for them. My current receipt of ESA is now unknown (I should be receiving it this monday, but according to the letter, it's been stopped) however, the lady on the phone at DWP said everything was still fine, so I'm confused. 

I'm now at a point in time where I'll be at the Royal National Orthopaedic Hospital, Stanmore, for most of December (from 6th to 24th) with only DLA care component as my source of income as my wages have run out and I obviously can't rely on ESA. Luckily, I live with my parents still (seeing as there's a lot of things I can't do anymore, I need someone with me pretty much all the time), however, as my Dad is out of work thanks to sciatica and my mum is, like me a community volunteer (she also has to take up my portion now as well as I'm too ill) we have practically nothing as far as income as all the benefits Dad receives go toward rent and council tax (and the benefits are due to go down, if I understand things right). So we're truly stuck and all these tests and hoops I have to jump through to prove that I am ill are wearing me down. My Bipolar feels more like Major Depression as I haven't had a mania episode for a while now.

The main problem is, I'm very cynical and very sarcastic, so I tend not to let others know that things are as bad as they are and everything I say seems to be taken as a joke. This whole ordeal which has been non-stop now for as long as I can remember is making me feel completely worthless and as though I don't deserve to live in this country. I can just about cope living day to day with my problems now, I can't consider working (no matter how many times I'm told I'm "too young to stop working" like that'll magically change things) let alone have hobbies or things to enjoy and even if I did, I can't afford them now on £75.80 (or whatever it is now) a month. Luckily, I have been saving here and there, but it won't last long seeing as I have a credit card to pay off...

Benefits - a lifestyle choice?

Great film from Poverty Alliance

Robin's submission to the DWP

I am very interested in how the changes will affect me, and people like me that have some need for support, but aren't very obviously (visibily) disabled, and have changed our lives to work within limitations.

I currently work three days a week, and DLA enables me to work part-time. I can't work full time because my impairment leaves me fatigued, and I need the four days of not working to balance rest and housework. Were I to not be on DLA I wouldn't be able to afford to work part time.

When I manage my energy levels, I need little support, but as soon as I use up my energy supply I cease to be able to care for myself, lose the capacity for speech, and struggle to leave my flat.

The support I require (and get) is mostly informal, from friends. I also use my DLA to pay for things like proper food (so I stay healthy), and odd costs. For example, I am Dyspraxic, and seem to wear out clothes very quickly, possibly because I bash into thing / rub against surfaces / trip over more often than a non-disabled person might. Because of sensory sensitivity I am very particular about the textures of clothes I wear. This means it can be hard for me to find clothes that are sturdy and comfortable, and I have a more limited range to choose from meaning I often can't find clothes in places like Primark.

I find point 19 on page 10 "DLA is widely perceived to be an out-of-work benefit and receiving it appears to reduce the likelihood of being in employment, even after allowing for the impact of health conditions or impairments." a rediculous reason to be changing a benefit. If public perception of a benefit is wrong, you work to change the perception, not the benefit! The reason many people see it as an out of work benefit (which, disgustingly, seemed to include some politicians) is the media reports it as such, and no one seems to challenge that.

DLA means people like me CAN work. It supports us in work, and my being in work means I need more support than if I were sitting at home all day.

As for "There is evidence that people who receive DLA have lower work expectations."  this isn't because of DLA, it's because of the challenges faced when seeking work as a disabled person! When I was looking for work it had to be local or involve a straight-forward journey of no more than an hour (ideally less), had to be part-time (three days a week maximum), not involve shift work, be in a small office with good acoustics, not involve a lot of "team work", and not require me to have a degree, as my impairment interfered with my ability to access a university education. I don't think these restrictions are atypical amongst disabled people, but work that meets our needs is hard to find.

I need to read the document in small chunks, and will email further comments as I get through it.

Demolition Of The Case For DLA Reform

Maria Miller, Minister for Disabled People, should immediately recall the Public Consultation on Disability Living Allowance (DLA) reform, and cease work on reform of this benefit. This should be done because the reasons given for DLA reform are not robust, with little evidence to support the case for reform and, importantly, no independent academic research. The use of the word ‘little’ refers to the two pieces of internal DWP papers used as evidence to build the entire case for reform – a footnote for one reference appears twice on consecutive pages. Thus the case for reform falls apart upon even cursory examination. As such, the consultation questions are deeply skewed and any answers will be likely to support wholesale reform. This is both unfair and unwise, and will cause hardship for many disabled people.

The wildest claim to support reform is that ‘evidence suggests that DLA can also act as a barrier to work’. This passage is footnoted, referring to “Disability Living Allowance and work: Exploratory research and evidence review, 2010, DWP Research Report No. 648” (RR No.648). This report also finds that “he main factor affecting the employment rates of disabled people is their disability or health condition” and that “a larger than average proportion of DLA recipients also appears to be affected by the specific types of impairment that carry the greatest employment disadvantage for disabled people” – yet these findings are not reported in the consultation paper, thus skewing discussion.

In fact, though the report claims that there exists a “perception of disability permanently precluding work is prevalent among individuals with disabilities not already in employment”, there is no evidence cited in the report that suggests DLA could be a barrier to work. The section and all references to it in the consultation paper could be interpreted as an attempt to misdirect, and should be removed forthwith. Further, it should be noted that the consultation commits the statistical crime of confusing correlation with causation. Whilst RR No. 648 does provide evidence that low employment is correlated with claiming of DLA, this in no way implies that one causes the other.

It could be suggested that the lack of evidence pointing to a need for reform has meant that misdirection was used in an attempt to convince the public that DLA reform is necessary. In particular, the graphs presented as Figure 1 and 2, on page 8 of the consultation paper, used to show the DLA caseload increasing at an alarming rate, are flawed in many ways, not least in the fact that no baseline is established for when take-up of DLA by people with disabilities plateaued after its introduction in 1992/93. There are further issues regarding the number of Pensioners as the report ignores demographic trends to show that there is a dramatic increase in claims by people over State Pension age. This is particularly questionable since a Pensioners’ eligibility for DLA would usually depend on their receipt of DLA prior to this – otherwise, they would be eligible for Attendance Allowance. This is not made explicit in the consultation paper.

Figure 2 is also misleading as it could be read carelessly as showing that 8% of the population claim DLA. I am loath to interpret this as intentional misdirection but it is, at the very least, a sloppy drawing of graphs. Another example of sloppiness is the first sentence of paragraph 15 of the first chapter, on page 7 of the consultation paper, reading “In just eight years, the numbers receiving DLA has increased by 30 per cent.” This sentence is utterly meaningless and a misuse of statistics although, once again, I do not wish to interpret this negatively. Yet another example of the spurious use of statistics is Table 1 on Page 9 which presents the “Distribution of current caseload by rate combination”. This table appears between two paragraphs – 16 and 17 – arguing that the current system is too complex and the benefit is not understood. This is an odd, and potentially misleading, place for this data to be displayed.

Beyond misuse of statistics, sloppy presentation of data and lack of evidence, there are further points to be queried. Whilst RR No. 648 does give evidence that DLA is complex and not understood by all claimants, as suggested in paragraph 19 on page 10, this is surely grounds for improving the current system rather than expensively replacing it with an entirely new one. Likewise the assertion, in paragraph 18 of page 9, that there is no system to check that rewards remain correct. The statement that “Two-thirds of people currently on DLA have an indefinite award, which means that their award may continue for life without ever being checked to see if it still reflects their needs” is a rhetorical tautology. Indefinite awards are given to claimants with conditions that will not improve. Whilst it is not unreasonable that medical advances in the treatment of a certain condition should prompt re-evaluation of those cases, this could be achieved by augmenting DLA rather than replacing it.

The core argument of the consultation paper is that DLA is a benefit not fit for purpose. Paragraph 9 on page 6 of the consultation paper states that: “DLA is a benefit that provides a cash contribution towards the extra costs of needs arising from an impairment or health condition.” The arguments presented in paragraphs 14 and 15 of page 8, claiming that the benefit is not fit for purpose, do not touch upon the original purpose of DLA or offer any argument as to why it is failing to meet its original purpose. The information presented is that the DLA caseload and expenditure is a “lot more than was originally expected” and the aforementioned misuse of statistics on the increase in DLA claims. No arguments are presented as to why this means that DLA is not fit for purpose. The only way an argument can be construed is to look at the issue with a preconceived idea that there is an acceptable level of DLA claims prior to evaluating the health and impairment of claimants.

Finally, paragraph 2 betrays this preconception by stating: “We believe that now is the right time to reform DLA”, yet offers no qualification or reasoning for this belief. Paragraph 3 continues by saying that: “We must ensure that our resources are focused on those with the greatest need”, with no qualification or definition of the term “greatest need”. This could be pointed to as a suggestion that those with “lesser needs” will have to struggle unsupported with their impairment, and that the definition of needs is at the whim of the Secretary of State for Work and Pensions.

The arguments above demolish the case for reform presented in the consultation paper, dealing with each point made in the consultation paper. It raises serious questions about the competence of the Minister responsible and the Secretary of State that a consultation paper for reform has been based on such a shocking lack of evidence, preconceptions about benefit claims and abuse of accepted statistical methodology.



Rhydian Fôn James (mathematician and economist)

D's response to the DLA PIP reform paper

D says...

I’ve just read the DLA reform paper…

First thoughts were, why fix something that isn’t broken? According to the report, 9% of the population claim DLA. The Office Of disability Issues estimates that 10% of the population are disabled. I’m not sure if that 10% includes people like me (I’m guessing not, otherwise I imagine the number would potentially be higher. I’d perhaps argue that even though I’m covered by the DDA legally, I’m not ‘disabled’). So, assuming that it’s roughly correct the ‘right’ number of people seem to be claiming. There are people claiming who shouldn’t be, people trying to claim for ludicrous things and getting aggressive and abusive about it. However, this is a minority and is likely matched (if not exceeded by) the people who don’t claim, either because they don’t know about it or, (try telling the Daily Mail this) don’t want it.

Secondly, the way the paper is written makes it sound like all a claimant has to do is say they are disabled and they get a big fat handout. This is not the case. The vast majority of the paper states new measures that are already in place:

• 6 month qualifying period? Yep
• Assessment of what you can and can’t do? Yep
• No process to check the award is correct? Yes there is, awards can be (and frequently are) fixed term (people can get better or learn to adjust- DLA is for needs arising from a disability, NOT from the disability itself)
• Scored on a proxy of care needs and mobility needs (the report on one hand criticises this and on the other confirms PIP will have the same approach!)
• Successful use of aids etc should be considered? Yes, DLA already does
• Individuals responsible for reporting changes of circs? Yep

DLA isn’t inherently broken. Yes the process is difficult and the forms are a pain. But… it’s a self assessment benefit. The DWP need as much information as they can possibly gather. It needs to be accurate, it needs to be detailed and it needs to give a picture of what the person can do, can’t do, how they do things etc. I expect it is difficult to fill in and can be unpleasant but it’s necessary. The other way to do it is to have an assessment that seems to be deeply unpopular, costly and unnecessary.

The flip side of this is why do people find it difficult? Have DWP asked? Have they considered researching the issues and discussing possible solutions with disabled people and communication experts? Why not consider that?

Any money saved from not reforming the whole benefit but refining it could be spent where it is most needed, on educating people (both disabled and non disabled) that being disabled doesn’t make people useless or stupid; it just makes them approach tasks in a different way. So many people are amazed that a blind person can use a computer for example. Or that a blind person can navigate round a room or sit on their own without a sighted person following them round like they are made of glass. You can even talk to disabled people, you won’t catch their disability!

Some of the approaches of the reform are laudable- signposting people to further help and advise? Brilliant idea- why aren’t DWP doing it now?!  Making it more straight forward and easier to understand, yes yes yes! Again, this should be does as a routine lessons learned exercise as often as necessary.

With regard to being objective, then I imagine the process/assessment is. In fact its perhaps too impersonal. You are a file, a sheaf of paper. Do the DWP care that that sheaf of paper is sat on a shelf about to run out of payment? And its coming up to Christmas? And reducing or stopping that benefit impacts the other? No? Then why the hell not? This is a person’s life we are talking about!