My PIP Diary Part Two – The Battle Through Paperwork Mountain

First published Huffington Post 06.04.2017

A black and white negative photo of a DWP PIP form with a pen laid over it, as if it was being filled in.

In the first of my PIP Diaries I explored how finding myself thrown into the process of being reassessed for the new Personal Independence Payment made me feel. After being placed on an indefinite award for the so called “disability benefit” Disability Living Allowance that PIP replaced way back in the 1980’s, it was a shock to have to re-examine my life and abilities. I was stunned at the number of comments on the piece, and how it touched a nerve with so many other people who were either going through the process or had gone through it. The comments from that group were rather doomed ladened, and so as a large brown envelope fell through my front door I found myself filled with dread.

Before I regale you with stories of forms and piles of evidence to be scanned, I must point out that both DLA, and PIP are not out of work benefits. You can work and be in receipt of PIP. In fact they were created to help people cover the extra costs of being disabled which can mean many disabled people are able to work thanks to getting them. So when I say that I am rather good at filling in forms as it has always been part of my job, I’m not admitting I’ve spent a life on the benefits fiddle. As a youngster I worked in the benefits system, helping people make their first claims for dole and supplementary benefit, and learned how to fill in forms in a manner that ensures you give the right information. After that I worked in the media, helping create schedules for filming days and I now create audits and training guides around inclusion and accessibility. Thus forms are one of my key skills. Yet even I found my pen hovering over each page, unsure what to put.

Each double page covers an area of your life, things like getting washed and dressed to managing money, yet it isn’t exactly helpful in what you should put. You are asked do you need help? Yes? No? Sometimes? What on earth does sometimes mean? Once a day, once a week, once a month, or maybe once a year? Or is once a day a yes answer? Would once a year mean a no? There are pages of this. Next to the “simple” yes, no, sometimes questions, there is a page for more detail if required. I’d guess that if you didn’t fill this section in you would get very far. Yet how do you complete this to explain complex medical issues and detail the ways you are helped to live? As I said I’m really good with forms, yet with each page I got more and more nervous. Was I doing this right? Finally I finished, and had to just hope so.

A black and white photo of Mik Scarlet's face peaking over a pile of letters from his doctors and surgeons.

Next I collated medical letters from the various specialists involved in my medical treatment. Some are years old as why keep seeing experts, costing the NHS money, when I cannot be cured and my situation is static? Will the assessors understand that not seeing a specialist is not a sign of being cured or healed, but that a condition cannot be treated any further? More worrying is as I read through each letter I noticed that my diagnosis and prognosis varied wildly. I sat, shocked as I realised that there was no clarity around my medical condition. In fact some were so dangerously wrong I’ve had to get in touch to arrange an appointment to correct the errors urgently. As I scanned each page I felt a growing wave of fear, as while I understand where the errors lie, how could the assessors? With some actually contradicting each other, another fear gripped me. While I placed my forms and supporting docs in the envelope ready to send to the DWP I felt sure I would end up requiring a face-to-face meeting with one of the dreaded assessors. Thinking positively, this might hopefully allow me to clear up exactly what my medical issues are and what I can and cannot do, with or without help. Or not! As I slipped the stuffed envelope in to the post box I felt numb, with no idea what would come next.

Thus ends the second of my PIP diaries. I’m still shocked at how exploring my life in the mirror of what I cannot do has hit my confidence. I also now am gripped by a fear that a benefit that ensures I can work, as it funds my car through the Motability scheme, may be taken away from me. With the horror stories of people with obvious impairments that equally make walking impossible losing their PIP funding it is a real possibility. Of course looking on the bright side, with my medical records having so many mistakes in them, I’m damn lucky I’m here at all!

With that cheerful thought I shall leave you, ready for the next installment in my PIP dairies. Will I have to face the dreaded assessors? Will they visit me at home or will I need to battle my way to their lair? All this and more next time.

Photos Mik Scarlet 2017

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My P.I.P. Diary – The Saga Begins

This the first in a series of diaries charting my journey as I am assessed for the new Personal Independence Payment.

A negative image of a letter from the DWP, informing of a PIP reassessmentIn 1981 my spine collapsed, leaving me paralysed. After I came out of hospital I applied for two benefits called Attendance Allowance and Mobility Allowance. I was assessed by a medical expert, who interviewed me and liaised with the medical professionals helping with my treatment to ensure they understood my case. I was awarded an indefinite award of both allowances as it was clear my disability was one that would never improve. Years later these benefits were combined into Disability Living Allowance and my award was ported across as my impairment was still would never get better, and in truth it would only get worse over time.

This Monday I received a letter from the DWP which I had been dreading. I am to be reassessed for eligibility for the replacement to DLA, Personal Independence Payments or PIP. I immediately rang the number on the letter and was helped through the first part of my claim in a very helpful and friendly manner. I am now waiting for the forms to be posted to me, which I will then need to fill in detailing every detail about my current abilities and medical conditions. I will also need to collect a large amount of evidence to support my claim. I plan to write about this process in future columns here on the Huff. In this article I wanted to explore how having to examine my physical abilities and list how they impact on my life is making me feel, something that is left out of the current debate around the roll out of PIP.

After so long as a disabled person I have got totally used to my life. I have a wonderful wife, who has been with me for 21 years, who helps me with day-to-day stuff. Our relationship works amazingly well, despite the fact that she does things for me that she would not do if I was not disabled. We work so well together that neither of us think about this kind of thing at all. Well we didn’t think about who does what for whom until now. Now I have to prepare to list everything that I cannot do, or need help doing and then list how my wife Diane helps me. I will need to get every doctor and medical professional to write letters outlining my medical issues, what treatments I have had and am still having and how these impact on my life and abilities. I am stunned at how I feel about this examination of my personal life.

I found myself filled with waves of sadness and self doubt while I was in the bath. I need help getting in and out of the bath as my shoulders have arthritis, meaning I find it hard to weight bare unaided. I could have a shower put in, but baths stop the spasms in my legs which cause me a great deal of pain. I also need help washing my back as my shoulders lock and once I’m out of the bath I require help with drying and Diane holds me up as I dry myself, in case I slip during the drying process. I have never told anyone this. Not even the medical professionals in my life, as I feel this is personal. Yet this is just one element of what my wife does for me every day. I was shocked at how long the list of things I need help with actually is. So there I was, sat in the bath feeling awful as I mentally listed everything Diane does for me, and the guilt was palpable. The feeling that my wonderful wife was burdened with me washed over me like soap. I have never felt like that before.

What is most tragic is that the money I get in DLA does not even go to Diane. She does all these things for free, out of love for me. Instead the mobility element goes towards paying for my car, which I lease from Motability. The care element I use to pay for things like wheelchairs. Just one of my current wheelchairs cost me over £5000. I buy new tyres on a yearly basis, which comes to around £60. A new cushion is over £250. Wheels are over £1500 per pair. The list goes on. And that’s just my wheelchair. The disability charity Scope calculate that disabled people have on average extra costs of £550 per month, and that is what DLA and PIP are meant to help with. Not totally cover, but help towards.

As I was helped out of the bath, I admitted to my wife how I was feeling and she hugged me. She told me I was not a burden, yet I can’t under estimate how much beginning the PIP application process has impacted on my confidence and mental health. And the saga has only just begun…

First published on the Huffington Post 22.03.2017

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Has the everyone just started taking crazy pills?

Just when I thought the topic of disability and sex couldn’t get more media focus, something else catches their attention. Alongside the proposal from Becky Adams to open a special “Disabled Only” brothel that I explored in my last blog there is now the story of Chris Fulton who is looking for a solicitor who will help him fight for vouchers from the NHS to pay for disabled people to visit sex workers on the state. I can’t even begin to explain why this is a non-started of an idea. But I will try…

Disabled people who have impairments that effect their mobility or their ability to carry out daily activities easily already get payments through the DLA, which is soon to change too the PIP payments. It’s our choice how we use those payments, so if a disabled recipient feels that they need to visit a sex worker they can use some of that money for that purpose. To claim that sex is a human right opens up a can of worms that might lead to many other members of our society demanding that they also have the right to visit sex workers of the NHS. I’m sure this idea will drive those people who believe the propaganda that disabled people are already getting loads of free stuff from the state into a rage. A visit to the Daily Mail online will prove me right I feel.

Of course at the minute disabled people are facing a mirriad of cuts and changes in how their lives are run. One of the biggest is the closure of the Independent Living Fund. The fund used to provide funding to cover the costs of paying for Personal Assistants, who allowed people who need help with dressing, washing and eating to living independently. These costs are now going to expected to be covered by local authorities, but there is no legal expectation for them to do so. This means that many disabled people are facing the prospect of a future in residential homes, after living their lives in their own homes totally independent. Surely this is the kind of thing that people like Chris should be campaigning for? How can you use your hooker vouchers if you can’t get dressed, washed or fed?

But even if you ignore that bigger issues, how would this work? Who says who is so disabled that they are entitled to use the voucher scheme? Would the government get in Gok Wan to cast his eye over the claimants to decide who isn’t sexy enough to get laid? Or even worse, would Atos being hired to run Sex Capability Assessments? Would you need to be assessed by a panel of Atos experts before you could claim for a freebie sex sessions?

Then would those pesky fraudsters start trying to get the vouchers even though they weren’t entitled to them? Would non-disabled people be greasing down their hair and acting all disabled in the attempt to get some free sex? Or would sexy cripples try to down play the gorgeousness as they feel they should also be entitled to some extra sex? Maybe the BBC’s Saints and Scroungers could run a sex special exposing those terrible people who are really able to get themselves sex but who have pretended to be unshagable to defraud the state.

In all seriousness, is state funded sex the real answer to the way disabled people are considered by society? I would hope that we would campaign to change the way we were thought of by the wider world. More disabled people in the media, more opportunities to find work and accessible housing and an end to the targeting of the benefits that allow disabled people to live an independent life would all be campaigns that might help a little. Now it might seem a bit like a “Giz a job” idea, but I really feel that more strong, confident and attractive disabled people in the media would help loads. It would show the non-disabled world that their stereotype of disability is wrong and create role models for disabled people. I know that I have met loads of disabled people who have told me that seeing me on the TV back in the 90’s gave them the confidence to dress up, go out and have fun. Whether we like it or not, that is how most people meet a partner. I must also admit that I used to get a lot of steamy fan mail when I was a kids TV presenter. All those mums watching TV with their kids had no problems with the idea of sex with a wheelchair user that’s for sure.

Disabled people want equality in choice and experience. Expecting the state to pay for us to have sex is so far away from this dream it hurts. On top of that it damages the way society sees us further. I want the wider society to start seeing disabled people are great protective partners and not tragic charity cases that all have to pay to get their bits felt.  So come on folks, let’s stop shouting about such silly ideas.

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Don’t read this… read that

I did plan to write a blog about the various proposed changes in what assistance disabled people get via benefits and care packages, but I actually feel that everyone would do better to visit the Disability Now website, or read the current issue of the magazine. The team there have put together a series of fantastic articles that really explain the planned changes.

Disability Now

I must congratulate Ian Macrae and his team at DN for their superb work helping anyone who might be effected by the proposals to understand what is ahead. Well done.

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"Scapegoat – Part 2"

Further to my last blog, I recently attended an event where I met a fellow disabled person who was the card to hold when playing disability Top Trumps. Not only was he a wheelchair user who had a weakened right arm, but he also was loosing his sight due to Macular Degeneration, and his hearing too, and he was also Dyslexic and Dyspraxic. So he was Physically & Mobility Impaired, Hearing Impaired, Sight Impaired and had a Learning Disability… and he had just had his Disability Living Allowance stopped, and he didn’t even get the full amount in the first place!. Now if this guy is considered to not be disabled enough to fulfil the criteria for DLA then who the hell is?

It’s plain that there is a plan behind this new policy on disability benefits. Many years ago I worked as a Fresh Claims Clerk in Luton dole office. There was a kind of unwritten policy there that every now and again a group of claims would be stopped and then we would see who could spare the time to come in a spend all day sorting out their benefits. Yeah it did weed out some fraud, but it caused a great deal of upset for the majority of legal claimants. This policy looks like is being applied to disability benefits. Surely only those who are in real need will battle to ensure they keep their benefits? But what about those people who are too disabled or sick to be able to spend time on the phone, attending offices and filling in forms? Or what about those who have a disability that means they can’t understand what is happening?

The thing that makes me most angry about this new Tory policy is while they are hammering the disabled they don’t seem to care if their members act like Barnet council has recently. Brian Coleman and his fellow Conservative councillors on Barnet council have awarded themselves huge increases in the allowances, some of nearly 40%. Now whatever your views on this bonanza pay day, I feel that the fact that this they are members of the same party that is telling us we all have to tighten our belts and prepare for job losses and massive cuts in services does have an element of hypocrisy. If a disabled person get the highest rate of Incapacity Benefit and DLA their annual income is around £11000, but Mr Coleman is now earning an annual wage of £113,735 (plus the pay from any private sector jobs he holds of course). Both is from the public purse, yet who is more deserving? Let’s not mention the massive pay packets and bonuses of company bosses and bankers. So this government really is attacking the poorest while ignoring those who could easily afford to put more into the public purse.

But what really upsets me is this attitude that if a disabled person is not working or fighting to find work they are a useless drain on society when society isn’t exactly an equal playing field. I recently spent a day with a fantastic group of young disabled people at a charity called HertsPASS. They help disabled people get ready to try to go into the work place, and are staffed almost entirely by disabled people. It was a real eye opener to see how much these young people wanted to work, and an inspiration too. Especially as they knew the barriers they would be facing as they as they tried to become independent and employed. One of the guys there worked as an advisor to companies on issues of access, yet he had been waiting for 6 years to find a flat where he could live with his PA. So since he left college he had been forced to live with his parents. He had finally found somewhere and was going to be moving in soon. We also discussed how few clubs and bars and other places a young man who had just left home might want to visit were accessible to him where he was going to live. So even though he had managed to find work, and was now doing what the government says all disabled people should do, he still didn’t have access to the same experience of living able bodied people have. Surely the way to get disabled people into work is to move towards making all of society accessible. If the policy was to create fully integrated education, make the built environment out there fully accessible and change in attitudes towards disability and difference then everyone would be playing on a equal playing field, and would get the same chance to work and the same rewards from it.

This week it was brought home to me when I attended an event at Shape in Kentish Town that examined the portrayal of disabled people in the past. We looked at paintings and engravings of disabled people from the 18th & 19th centuries and discussed what the portrayal might mean. Most of the people who looked at made a living as side show exhibit. Some made a good living showing their amazing abilities despite their disabilities to Royalty and Nobility while others appeared in Freak Show style events. Some where event the property of the people who ran the event. Yet if we examine how they lived they could almost fall into the hoped for future of disabled people that this government is championing. They all worked, and paid their way. So what if hey had no dignity and had to live off the attitude towards their disability? So what if they had no security? Could it be that this government is forgetting the Tories old love of Victorian Values and going for Dickensian Values instead?

Whatever, I worry that if these changes are being put in place by our government after such a short time in office will we end up with a situation that means we look back on the past, and the discrimination we faced, as a golden Utopia?

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We’re for the Chop… or "My Life as a Scapegoat"

If I’m honest the subject of this blog has me shaking with a mixture of anger and sadness that is making it a little hard to know what to type into my keyboard. However, I feel it is so important that I challenge the hypocrisy of the current scapegoating of disabled people that I have to write something. I just apologise if it is a little ranty and rambling. Whatever, here goes…

The last government started the process of changing the mind set of the British public towards disabled people. We went from being valid members of society, who were given certain benefits to offset the way we were disabled by both our medical conditions and the way our environment does not cater for our needs, to work shy scroungers who were defrauding the state of huge sums of money when we should have been out there working no matter how difficult that might be for us, like all the salt of the earth able bodied voters. That or being whisked off to a clinic to be assisted in suicide. The saddest thing was that this change in the way we were talked about worked too. People in the street stopped seeing disabled people as people they should have compassion for and we became some kind of useless waste of space.

Blue Badges are a perfect example. Once they were seen as something given to people who had a medical need for them and were a kind of benefit that was deserved. Now they are seen as an unfair freebie that have become the target of thieves. There is even a website for people wanting to buy stolen Blue Badges, that gives advice on how to gain one illegally.

The new Con-Dem government has really taken the gloves off on disabled people. It seems those of us with disabilities are to be the target for many of the deficit busting savings our new chancellor outlined in the recent budget. Not only is Incapacity Benefit, or Employment Support Allowance as it is to become, in their sights even though we live in a society where the workplace is not accessible to many disabled people so working is out of the reach for many of us, but also Disability Living Allowance is also now under the knife.

Lets just examine those benefits shall we? Incapacity Benefit was where all people with any medical problem was placed under the Thatcherite Tory government to massage the unemployment figures during the last recession. Many disabled people were told that they were “unemployable” due to their disabilities and so this was the benefit for them. Huge numbers of disabled people began a life on benefits. Invalidity Benefit, as it was then called, was slightly more than Unemployment Benefit, mainly due to it being a dumping ground payment, but still wasn’t an amount that meant those claiming it were on easy street.

Disability Living Allowance came into being when Attendance Allowance and Mobility Allowance were combined. These were payments towards the extra costs incurred by disabled and sick people when living day to day. Mobility Allowance, or the mobility component of DLA, is there to pay towards travel costs, and as we still live in a society where our public transport is barely accessible to many disabled people, cabs and specially adapted cars are still the only means of getting around open to many. Many people like me who get the Mobility component, give the entire amount towards paying for our Motability car. (no we do NOT get a free car!) As Motability is one of the largest buyers of cars in this country, cutting this benefit will impact on our struggling car industry. Attendance Allowance, or the care component of DLA, covers other costs. Anything from paying to have someone to accompany a disabled person when going out, to paying for things like gloves that I use when wheeling about are meant to be covered by this benefit. Neither benefit is enough to make any recipient rich, and due to the way entitlement is assessed they are not open to fraud.

But it is not benefits being targeted that most annoy me. It is the fact that disabled people still do not have real equal rights legislation. The Disability Discrimination Act is a toothless piece of law that anyone can get round, as long as they can prove that to bar disabled people from the same treatment as the rest of society is “reasonable”. This wonderful word, included in our equality law only, means that you can pretty much do as you like when it comes to disabled people, as we are the only group who faces discrimination due to the environment. The changes we need for equality are structural changes to the world we live in, they cost money and so during this time of recession is it reasonable to ask struggling businesses to implement a program of expensive works to their premises? Most would claim not, and they would win in court. The other reason why the DDA is a useless law is that all other minority groups, when they face discrimination it is an act against the crown. For disabled people, discrimination is an act against the person and so we have to take out private prosecutions using our own money. This why so few cases have gone to court, and another reason why the changes we need to make the UK a more equal place have been so slow in happening.

Even if the British Isles was a wonderful world of accessibility, the last problem with focusing on the benefits disabled people are entitled to is the recession itself. As the numbers of unemployed are going up, in a repeat of the era of Thatcher, who exactly is going to be rushing to employ all these terrible scrounging cripples? I can’t see many employers rushing to take on someone who not only has no work experience as they been on benefit for years due to a disability, but who also needs them to possibly change their building’s access and change their work practises? Don’t forget that someone with a disability will need to have the fire escape procedures changed to ensure the business complies with Health and Safety and fire regulations. And that’s just one little problem. In a time where millions of able bodied people are searching for work, the idea that disabled people are going find joining the work place any easier than they did in the past is a joke.

So now we are rushing towards a new dawn for disabled people, where we are to all be reassessed for all our benefits, whatever the cost of that procedure is to the tax payer, and some will be expected to battle to get a job in a hostile work environment and thus end up on a different and lower form of benefit, and the rest will be scarred by the fear that this scapegoating of disabled people causes. For all of us, it spells the end of the feelings of pity and sadness that we once caused in the general public, and that we hated, to have them replaced by much worse feelings, deep resentment and mistrust. Personally I think this government should hang their heads in shame. If they were going to give us real equal rights laws then maybe, just maybe these changes could be justified. As it stands they are picking on the members of society that have the least ability to fight and protest. It smacks a little of the early policies of Nazi Germany, and we all know where that led.

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