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Posts Tagged ‘dla

Definition:
Fear of Brown Envelopes – a state of anxiety caused by receiving a dark manila DL envelope, with a return address of the Department of Work & Pensions (DWP).

Without exception my disabled friends are united by concern about benefit cuts, often worrying about bad news. At Christmas bonus time, or when the new tax year starts, people tweet to remind each other not to panic when something ominous and brown lands on their doormat.

Many disabled folk are also scared of being “reported” – programmes like “Saints and Scroungers” and “Benefits Street” don’t help the public perception. Even if it is completely unfounded, when a report is made (by someone hiding behind anonymity) the disabled person’s benefit claim is re-assessed. Why, if we are legitimately disabled, do we fear re-assessment? For that, you need to consider the difference between Disability Living Allowance (DLA) and the newer Personal Independence Payment (PIP).

Many people with a long-term condition which is unlikely to improve, like me, are on an ‘indefinite’ DLA award. When I was assessed, it was awarded on the basis that walking 50 metres – while then sometimes was possible without mobility aids – would be dangerous for me, and/or cause me pain, which needs me to rest and recover as a consequence. I’ve always described this as “the less I do, the better I am”. However, the newer PIP system merely asks whether I can “mobilise” a distance of 20 metres, by whatever means. Of course this lower criterion is intended to reduce the number of awards made, and save the government money. Sod the fact that it’s further than 20 metres to my nearest shop, bus stop or postbox, and I often can’t park within 20 metres of my doctors’ surgery or hospital clinics either.

There are other issues with PIP which are well documented elsewhere; such as the cost to bring in PIP (supposedly done to save £1.2bn a year, it’s actually costing £1.6bn more); despite only 0.5% of DLA claims being fraudulent (according to the government’s own figures) they intend PIP will reduce disability claimants by over 20%; as well as the ridiculous suggestion that 20m is as far as anyone needs to be able to move. So now you can see why many lifetime DLA recipients fear they will not be awarded PIP at reassessment. It is clear that many people will still have their disabling condition, but will lose the support that benefits provide.

And if somebody, maliciously or well-meaning, reports a disabled person to the DWP, that person will be reassessed. Not against the criteria of the award they currently hold, but against the new, harsher, criteria of PIP.

This next comment may sound silly, given that friends, neighbours & even strangers tell me how confident and strong I am – but I too harbour that fear. In fact I thought seriously before writing this blog, hoping nobody with ill-intent is reading. My DLA is my only income – for everything else I rely on my husband’s support. And I depend upon it. Not only is it important for practical things, but I also need it for self-esteem: to validate the fact that it isn’t my fault that I can’t work, that I am in genuine need, that the state recognises this and supports me with a small amount of money (which I use for minicab journeys and extra hours for my PA-cum-cleaner) .

So, when I go out to the corner shop of an evening, sometimes just popping out quickly without my stick, if there’s an unfamiliar face hanging out on the street corner, or a car parked nearby with someone waiting in it, it *always* crosses my mind that they may be spying on me. Waiting for me to slip up. I wonder if my limp is obvious, or if it’s too dark for them to see the grimace on my face or the way I’ve stuffed a fist into my back to keep myself upright through the pain. Watchers don’t know that I’m only going to the nearest shop (less than 50 metres) for a single lightweight item. Or that if that shop has run out I have to return empty handed, because the next shop, just across the road, is too far for me to visit and return from without going back for my stick. And they certainly won’t know how much I’ll have to rest afterwards (after all, nobody sees you behind closed doors, only for the limited time when you’re well enough to get out and about).

Maybe this sounds like a pity party, but I assure you the fear is real. Some day, all DLA recipients will be transferred to PIP, and I’m worried that I’ll be one of the genuine disabled people who will lose out. After all, somebody will, and I have the disadvantage of “looking normal”. And if I lose my highest rate mobility allowance then I lose my entitlement to a blue badge, meaning I won’t be able to park in a space wide enough for me to get in and out of the car door. I’d also lose many other local travel benefits. And as well as the mobility aspect, there are my care needs too – currently I have a wonderful PA who keeps me and my house straight. Without these things I – a strong, independent and often outspoken woman – could end up stuck at home, feeling isolated and increasingly depressed. If it could do that to me, imagine the impact on someone less confident or unable to advocate for themself.

If you’ve read this far, you’re probably wondering what the point of this article will be. Well, this was all triggered by an incident yesterday. I was feeling quite well for a change, and decided to do something productive with the energy. So I loaded the dishwasher, as a surprise for my husband and in an attempt to make the kitchen a little less grungy. It took perhaps a minute to shift a few bowls and pans from the worktop to the machine underneath. Partway through, it began to hurt. When I finished, I had stabbing, burning pain in the back of my pelvis. I went to sit on support cushions, to double dose my meds and rest. It took nearly an hour before the pain had subsided to a point where I could get up again.

One minute of activity. One hour of rest as a result. You can see why physical disability often leads to depression. Then I realised: this happened in private, without witnesses. Nobody else would ever know, they only have my word for it. And because I “look normal”, why would any person who sees me think I am less than able to undertake even such simple routine chores?

So I too, like so many of my disabled friends, live in fear of brown envelopes. This should not have to be the case.


If you have been interested by this article, I encourage you to consider sharing it, and to remember that you can never tell how someone is feeling just by looking at them.

I often read ignorant comments in newspapers – or even whole articles – which clearly do not understand the disabled person’s situation nowadays. Perhaps these commenters do not count any disabled people among their friends and so have no personal experience or understanding. Don’t worry – I’m here to explain the basics and explode some disability myths!  Let’s start with some very commonly heard misunderstandings.

 
We get a free car

  • No! However, if the disabled person qualifies for Disability Living Allowance at the highest rate for Mobility (i.e. can barely walk or not walk at all), then they may opt to give up this money in return for use of a car via the Motability scheme. It’s essentially using their DLA mobility assistance for a hire-purchase car rental. Even then, any but the most basic models of car will require a deposit which the disabled person is required to pay, and you have to go through this process every three years.
  • Not everyone who is disabled with mobility problems will qualify for the higher rate of mobility DLA, so they do not have the option to get a Motability car.
  • Those who do get DLA may need it for other things – for example I spend mine on minicabs to get around. The higher rate is £54 a week (in 2012) and this doesn’t go far enough if you have other transport and mobility needs to pay for, so not everyone will want to give this money up in return for a Motability car.

Truth: There is no such thing as a ‘free car’. If a disabled person gets DLA at the higher rate for mobility then they can opt to give it all up to pay for a Motability car, but they may have to fund a deposit out of their own pocket to get the car that they need. If they give up the mobility component of their DLA then of course they don’t have it available for other needs.

 

We all have a carer (aka “Hello love, who’s with you?”)

  • No! Many disabled people live entirely independently, on their own.
  • Other disabled people live independent lives with the help of Personal Assistants (PAs). Note the term PA – the difference is that while a carer may take on a very medicalised, nursing role, a PA will do whatever the disabled person independently asks them to help with.
  • We don’t all qualify for care or assistance. For example because I can wash myself (albeit with aids) I don’t qualify for any help from social services, even for other tasks that I need help with such as preparing food or cleaning safely.

Truth: Some disabled people employ Personal Assistants to enable them to have an independent life; some have carers (in the medical sense) to tend to them; some have long-suffering spouses who muck in as necessary despite being unpaid; and some do not have, or don’t need, anyone to help them!

 

We get a wheelchair if we need one

  • Not necessarily. And those that we do get provided can be too basic – heavy and hard to manoeuvre or lift into the car – for our needs. To learn more, please read my previous article ”Your legs came for free – why don’t my wheels?”. My own chair cost over £2000 but the NHS only contributed £700 towards it, the cost of the more basic model that they would fund. This despite Wheelchair Services agreeing that the £2000 wheelchair was what I really needed. I had to pay the rest.
  • There are charities such as Whizz Kids who try to plug the gap and provide the chair which is actually required. The existence of these charities proves that people do not always get what they need through the NHS.
  • Even when a wheelchair is provided through the NHS it can take time. My first chair took 8 months from first appointment through to delivery.

Truth: People who need them will usually be offered a wheelchair but it might not be one they can lift, or propel safely. Many people revert to buying their own, with their own money or if they are in England they may get a partial contribution from the NHS (known as the ‘voucher scheme’). The difference in cost can be many hundreds of pounds, or in the case of powered wheelchairs, thousands.

All of the above points can be summarised as a belief that “we get the help we need” and as you can see, no we don’t! We don’t all get care, there is no such thing as a ‘free car’, and often the NHS can only provide a basic model of wheelchair.

Things are set to get even worse for disabled people when the Welfare Reform Bill takes away more of our funding, removing DLA and reducing the entitlements for those who cannot work. But that’s a whole other story!

Now to a few points about people’s conditions.

 

We all want to “get better”

  • To understand what’s wrong with this statement, you need to understand the difference between the medical model of disability (which says “What’s wrong with you and how can we make you normal?”) and the social model of disability (which says “What access barriers do you have and how can we remove them?”). (For more information see this page on the BFI website.) However, what you need to know is that the social model is preferred nowadays, and so disabled people’s differences do not mean that they are somehow “broken” and need to “get better”. We just need any barriers to our access to be removed, so we can be equal!
  • Many Deaf people see their deafness as part of their culture, and those people use the term “Deaf” with a capital D. There is a whole Deaf community, and they have their own pub nights, discos, churches etc. Deaf people do not necessarily see it as a part of themselves which should be changed if it can be. This means that cochlear implants can be very contentious among d/Deaf communities.
  • Some people who were born with their impairment – for example someone with Cerebral Palsy – will just see themself as “me”. It’s the way they’ve always been, and if the impairment was removed they wouldn’t be “them” any more. This also applies to some people with mental health conditions which influence their personality. So not everyone would want to be “fixed” even if it was possible.
  • Other people will see their impairment as being static, so no matter how much effort they put in, it would not improve. For those people there is no point in hoping for a cure.

Truth: Not everyone with an impairment wants it to be removed or “fixed”, even if that was possible (which of course is not always the case). Of course it is a matter for personal choice – some disabled people are forever searching for solutions to improve their condition, but others are not. This area can be a minefield for the non-disabled person to negotiate but if in doubt, defer to the opinion of the disabled person that you are dealing with. This also shows why it is not correct to ask “what’s wrong with you?” – the answer might be “Nothing, I’m fine!”

 

We are contagious

  • Most of the causes of impairment cannot be caught. Of course there are some cases where the cause of impairment is a virus e.g. HIV. Even then, you can’t catch it from talking to us or normal discourse.
  • There will be other examples where the original cause of impairment was a virus such as measles, or perhaps a virus has triggered a chronic fatigue condition, but this was in the past and the person is no longer contagious.

Truth: Generally not! It is very rare that the disabled person has a contagious condition. Don’t let the fear of contagion put you off talking to or spending time with a disabled person. However if you have good reason to be suspicious, and a real need to know – for example if you work as an assistant to the disabled person – then just ask the person concerned if they are currently contagious or if there is any contact that you should avoid. Other than that, carry on as normal.

 

It’s ok to ask “What’s wrong with you?”

  • No, it’s very rude! It is none of your business why someone is disabled. Just because they may seem different or use an aid does not make them public property!
  • As above, not everyone believes there is something ‘wrong’ with them

Truth: You should avoid this kind of question as it can be offensive. If you need to ask the disabled person about their impairment, e.g. so you can provide a service to them, then you should ask them about any access needs they have (and focus on how to address these needs, not what the ‘cause’ may be). Read about the Social Model of Disability and then focus on how you can remove any barriers to their access.

 

If  you can walk, you can’t be disabled

  • Not true – there are many “invisible disabilities”. For example there are conditions which cause pain, or would limit the ability to walk far, which you cannot detect from looking at someone – lung or heart conditions for example, or joint pain. Worse, people with invisible disabilities often live in fear of being judged or even reported by neighbours who don’t understand their condition.
  • Plus of course, not all impairments are physical! People can be disabled by mental health conditions such as bipolar disorder or agoraphobia.
  • There are also variable conditions. Someone may be able to do an activity one day, but not the next. Indeed, sometimes undertaking an activity (like going for a walk) might mean that they then have to take time to rest and could not manage to walk for a few hours or even days. You don’t see the rest time as it takes place behind closed doors.

Truth: If the person self-identifies as disabled, then they probably are! You certainly cannot tell from looking at someone whether they are in pain, or will have to rest when they get home. To be honest, it’s probably none of your business.

That’s cleared that up! Finally a couple of myths on a hot topic…

 

We don’t go to work

  • That’s just not true. I know disabled people who work and if you think about it, maybe you do too. How about the actor Verne Troyer (Austin Powers’s Mini-Me) or the reporter Frank Gardner?
  • In fact some disabled people rely on their Disability Living Allowance to enable them to work – perhaps it pays for their transport to get there, or for ready meals when they are too exhausted after a day’s work to make food safely.
  • There is also a scheme called Access To Work, run through Job Centre Plus, which exists to remove barriers to disabled people working. For example it can provide specialised seating, or even an assistant if necessary, so that disabled people can work where possible.

Truth:  Disabled people do work, but perhaps not in proportion to their non-disabled counterparts, or perhaps they have invisible disabilities so you don’t know that the person at the desk next to you is actually a disabled person.

 

We are all on benefits

  • No – not everyone qualifies. Whether it is Disability Living Allowance for everyday needs, or Employment Support Allowance for those who can’t work, these benefits are very hard to qualify for, or to prove entitlement. Many disabled people do not qualify for a disability benefit.
  • Not everyone who is entitled to a disability benefit will claim for it. There are many reasons for this, from someone who is in the lucky position to feel they do not need the money, through to the fact that the forms are long and daunting and emphasise what you cannot do – some people find this too hard to face. For more information please see my previous article DLA – just a form filling exercise? If only it was that easy!

Truth: Not every disabled person you see will be on benefits, whether that is due to not being entitled or just not choosing to claim. But in any case, bear in mind that disability benefits should be there for anyone who needs them, as they cover the additional costs of living that we have to bear – no matter what our backgrounds. Also, the fraud rate for disability benefits are very low – about 0.5% – do you really begrudge some extra money to people who genuinely need it?

 

I hope you’ve found this article helpful and will share it with your non-disabled friends and colleagues – whether they voice it or not, I bet they’ve wondered some of the questions above at some point! If you can think of any more myths about disabled people which need exploding, please leave them in the comments section. I’ll be delighted to read them.

Today on Twitter you will see many disabled people and charities saying “I support the #SpartacusReport”. So what is this report and what does it mean?

The Spartacus Report is a piece of research, released today, entitled “Responsible Reform”. It looks at responses to a government consultation about replacing Disability Living Allowance. The report was funded and written by disabled people, and we feel it belongs to us.

Disability Living Allowance is an essential payment, made to people with disabling conditions to compensate them for the additional costs of mobility, and/or care. It is paid whether or not the recipient is able to work, and in many cases makes the difference between being able to leave the house – and go to work – or being stuck at home. For more information on how essential DLA is to people, see my previous articles The real difference made by DLA and DLA – the gateway benefit.

In December 2010 the government opened a consultation on replacing DLA with the Personal Independence Payment (PIP). They had already said that 20% of DLA payments had to be cut, although the government’s own figures accepts that less than 1% of claims are fraudulent. So where would these cuts come from?

A response was published by Iain Duncan Smith, secretary of state for work and pensions, in April 2011. This document claimed to outline the responses of the consultation – from over 5000 individuals and 500 organisations – and the government’s reply to it. However, it glossed over the overwhelming opposition to the proposal of PIP.

Something had to be done. Sue Marsh (“suey2y”) and other disability campaigners joined forces. They came up with the “Spartacus report”. The Responsible Reform report gives the truth of the responses, having obtained copies of the organisations’ responses via a Freedom of Information request.

It shows that
• 92% of respondents opposed the proposal to change from 3 different levels of the Care component, to 2 levels
• 87% of respondents opposed the stopping of automatic entitlement to DLA
• 98% opposed changing the qualifying period from having the disabling condition for 3 months, to having it for 6 months before claiming
• 90% opposed the introduction of new face to face assessments
• 92% opposed change to the review system
• 88% said that aids that a person uses should not be considered when assessing them
• 88% opposed a new change-of-circumstance system involving sanctions
• 94% oppose the introduction of compulsory advice and support
• 64% said that one-off costs should be funded by DLA – it is not clear what this question actually involves
• 100% opposed the removal of DLA mobility component for residents of care homes, and the government have since rescinded this
• 99% oppose the removal or streamlining of passporting (i.e. using DLA as a gateway benefit to other services)
• 54% support the sharing of information between departments

In section after section, the conclusion is “The Government fails to respond to the concerns and suggestions of disabled people”.

It is clear that disabled people don’t want DLA to be overhauled or replaced with PIP, not because it isn’t working, but precisely because it is. The government needs to find the money to sustain DLA payments at their current rates, otherwise disabled people will be the ones who pay the price, by being stuck at home unable to afford transport costs, or lost without essential aids, unable to pay for the prepared food they need because they are unable to cook, or unable to fund the care they require. Please do read The real difference made by DLA in order to understand exactly what disabled people stand to lose. It’s more than just independence and dignity.

So what can you do about this? Read the report: Shortened Report – Responsible Reform and Shortened Press Release. If you’re on twitter, show your support using the #SpartacusReport hashtag. Contact your MP saying something like “This report into Disability Allowance Reform has been written, researched and funded by disabled people. As one of your constituents, I am very concerned by its findings and the misrepresentation of disabled people that it exposes. Please will you read the report and support sick and disabled people in calling for a pause to Personal Independence Payments in light of this new research. I look forward to your response.” You can contact your MP using the Write to them website.

Even if you are lucky enough not to be disabled yourself or have any disabled relatives, remember that disability can strike anyone. It is just one car crash, or stroke, or fall, away. One in two people will be disabled at some point in their lifetime. You too may find yourself dependent on disability benefits. Can you afford to ignore this report?

This blog is crossposted to Where’s the Benefit? where I am one of the team.

In the early hours of this morning, this is the appalling story with which the Daily Mail were leading. “Disabled benefit? Just fill in a form”.

They report that “Almost 200,000 people were granted a disability benefit last year without ever having a face-to-face assessment. A staggering 94 per cent of new claimants for Disability Living Allowance started receiving their payments after only filling out paperwork.”

The Mail goes on to explain that – shock horror – disabled people had completed DLA forms, and many of them had also provided evidence from their doctor. Yet because they had not had a physical assessment, there is apparently something wrong with this process. Another reason to erode disabled people and suggest that we are a drain on society. You can feel the implication that we are living on handouts because it’s easy, rather than because it’s essential.

How dare the Mail suggest that we “just” fill out a form! That form and notes comprise 55 pages – 38 of which have to be completed by the claimant. This involves a lot of writing, and having to be able to think straight and focus over a long period of time. It can require a huge effort, particularly if you have disabilities which affect communication, or your physical ability to write or type. Also, as the form focuses on activities which you can no longer manage, or need help to achieve, it is a depressing process – making you realise how disabled you really are. It can be soul destroying.

Perhaps the Mail ought to look at that form in more detail. That tiresome, frustrating, difficult form! Big, isn’t it? Detailed, isn’t it? Daunting, isn’t it?

As well as the form itself, there is the need for supporting evidence. It helps if you include letters from specialist doctors, and for my own application I also provided a diary of a week in my life, and statements from people who knew and lived with me, describing the help they have to give. I know my GP was also approached by the Department of Work and Pensions to confirm the information I provided. I had to not only explain the sort of help I needed, but provide independent evidence.

Fellow claimant Mary told me: “I have usually had to go for an interview but once got a 2 year award on “just” the DLA form. That form included sections to be filled out by all sorts of people involved in my care and treatment – GP, specialist consultant, main carer and so on – plus the instructions on the form required me to submit with it a copy of my (then) current repeat prescription and formal social services care plan. Perhaps that can be described as “just a form” but it’s hardly as if I got my DLA based purely on my own testimony.”

The form and supporting information provided will be detailed, and sometimes the decision makers will have a straightforward task – for example if someone is both deaf and blind. Often the information provided will be enough for the Department of Work and Pensions to make an award straight away. So yes, many people do get awarded DLA on the basis of “just” paperwork. But if somebody has significant impairments, sufficient to tick the boxes for the decision makers, and this is documented by their GP or other medical professionals, surely it would be a waste of time and money to haul them in for interview?

Form filling is exhausting, depressing, frustrating, and repetitive, but we force ourselves to jump through these hoops because we need the support. The money to cover taxi fares for someone who is unable to carry their shopping home on the bus. The money to pay for incontinence pads and other medical supplies. The money to buy a few hours’ time from a cleaner or assistant. We are certainly not doing it for an easy life!

And then there are the cases where people don’t get the award they are entitled to based solely on the paper application, and have to attend in person for a tribunal. In fact, most of the people of whom I know have applied for DLA actually had to appeal before they received the award they deserved. Take Robin – he has regular reviews of his DLA, and after having been found eligible for support twice based on the same information, he was then turned down in June this year. He is waiting to go to tribunal in December, and told me: “The DLA decision maker considered my regular loss of speech production or speech comprehension, and my struggle to safely cross roads because I can’t accurately judge distance or speed both non-issues. Well to me they are significant issues, and I regularly have significant difficulties because of communication problems, and I’ve nearly been run over more times than I can count.” Without the money provided by DLA, he is struggling to cover the additional costs caused by disability.

If you need more evidence of why DLA is so critical to the lives of disabled people, just read “the real difference made by DLA” or head over to twitter and see entries with the hashtag #myDLA to learn why this benefit is life changing.

Surely these stories make the point that, where possible, making a decision on a DLA award based “just” on paperwork is a perfectly reasonable thing to do. And where more evidence is needed, or the claimant appeals the decision, a face-to-face interview will be held.

Well, Daily Mail? What’s so unreasonable about that?

It is hard enough to get a DLA award as it is. Please, don’t say we’ve got it easy.

For some disabled people, it’s easy to answer this question. My friend Imogen is a single person who lives independently, supported around the clock by two carers – one week on, one week off. For those of us who require more support, however, it’s a grey area.

I don’t call any one person my carer. It varies; if I go to a gig I always take advantage of the deal for disabled people and get a free ticket for an “assistant” or “companion”. After all, I need help manoeuvring especially when I’m tired, and will need someone to fetch and carry from the bar for me throughout the event. The person who comes with me is usually my husband but not always; it depends which band’s on. I had a number of female friends competing to be my carer when I had tickets to see Robbie Williams!

At home, I struggle to define who is my carer. I receive disability living allowance (DLA) at the middle rate for care, which means I need assistance throughout the day, and this is true. But £49 per week doesn’t go very far. For that I can buy 5 hours of time from my wonderful cleaner, Lena. She spends Thursdays sorting the house out, doing all the housework that I’m ashamed not to manage; everything from emptying the bins, through hoovering, to several loads of laundry. Anything which involved bending down or lifting more than a small weight is a no-no for me.

I call Lena my cleaner. Sometimes I check myself and call her my assistant instead; she will do other tasks such as rearranging the crockery cupboard, helping me sort a box of items, gardening, or just fetching a jumper for me from upstairs. In fact, to my knowledge Lena hasn’t refused a request yet, although she does sometimes offer to do too many things – I draw the line at letting her walk my dog!

But in fact, the help I need IS throughout the day and certainly throughout the week. I’m always asking my husband to fetch things, join me to prepare a meal, even to help me stand up. Social services refused me any help because I have a husband who can do it, although they offered me a list of carers that I could pay. But that’s not the same; if I was single, I’d need care and while I’d have to give up my DLA care allowance towards it, I’d need several hours of external support, ideally every day.

And this is the thing. Many partners become carers in a way that is not officially recognised. They do not identify with websites or support groups for “carers” but they are quietly there, assisting, whenever they are needed. They are the ones who are expected to be strong. They are the ones who can’t take time off with ill health. DLA could not even begin to cover the wealth of work they do. It’s a gesture but no more.

Although I have Lena as a formal assistant, it’s my husband who takes the role of my carer, going above and beyond his usual role as my partner. But if you ask either of us to name my carer, I bet we’d say Lena, or no one at all…

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[Crossposted to Where’s the Benefit? where I am one of the team]

The government’s proposed changes to DLA have been much reported – and you can see articles about why it matters on Flash Says and across the blogosphere, including Where’s the Benefit of course. The news that 20% of people will no longer qualify, and that the new Personal Independence Payment (PIP) will become harder to obtain than the existing system is a bitter blow to those who worked hard just to demonstrate their entitlement. Indeed, it is reported in the news today that the proposed change from DLA to PIP could breach human rights laws; the fight to save DLA goes on.

But I think there is one more important aspect to DLA that has been overlooked; it is a gateway to many other things.

By that I mean that the standards for mobility and care levels are fairly well defined; organisations which deal with disabled people and assess their need can simply look at the individual’s DLA award to understand what that person’s needs might be, rather than reinventing the wheel and creating their own assessment system. In many cases, receipt of DLA at a certain level provides automatic entitlement to other benefits and services.

For example, here are some useful schemes for which you would automatically qualify, if you get DLA at the levels specified

  • Disabled person’s railcard – Any mobility award, or higher or middle rate care
  • Warm Front scheme – a grant for heating and insulation work – Any DLA award
  • Disability Premium – extra money if you are on income-related benefits – Any DLA award, although middle or higher rate care entitles you to a higher amount, the “severe disability premium”

and the items below are awarded if you have a Higher rate mobility award:

  • Freedom Pass – free travel on London Transport
  • Blue badge
  • Taxicard – reduced fares on London taxis
  • Dial-a-Ride
  • Refund on road vehicle tax
  • Motability scheme
  • National bus pass (in Scotland, higher or middle rate care award also qualifies)

Indeed, it was reported in the Northern Echo this week that “claiming [Disability Living Allowance] not only benefits the recipient and helps stimulate the local economy, it also simplifies the Blue Badge process. This is because people are automatically entitled to a Blue Badge if they are in receipt of the higher rate of the Disability Living Allowance mobility component so don’t need medical evidence to show they have mobility problems and so there are fewer appeals against the refusal of the badge.”

Many other organisations use DLA as a method of determining entitlement – it is a simple way to demonstrate need, and it’s rather less embarrassing than asking someone’s medical history at the front desk. For example many museums, theatres and concert venues will allow a “carer” to enter with you for free. Waving your letter from the DWP can get you the help or concession that you need!

Glastonbury and other festivals also use DLA as a guide to need – for example, in order to access facilities such as disabled camping, accessible toilets and viewing platforms, as well as being permitted a free ticket for your personal assistant, you need to be in receipt of higher rate mobility, and/or middle or higher rate care DLA. (If you don’t claim DLA then you can always make your case to the access co-ordinator, but then provision is discretionary rather than automatic, which can make for a nervous few weeks until you hear whether your application is approved!)

I also haven’t heard anything about how the Motability scheme will operate after the demise of DLA. Over half a million people use the scheme and will be part way through a contract when the changes come into force. Will PIP be enough to fund Motability car hire? How about those whose award level is changed after a PIP medical assessment – how will they be able to afford the car, scooter or powerchair that they need?

When DLA is replaced with PIP, things are going to get complicated. After all, the government has stated that it wants to get 20% of people off this type of benefit, but those people’s needs won’t go away. They will be left with no easy way to demonstrate their level of disability. Organisations won’t have a clear understanding of what the relevant levels of PIP correspond with – at least, not straight away. Will old DLA letters be able to be used? For how long, until everyone is required to hold a PIP entitlement instead?

People may be up in arms at the thought of losing DLA, and frustrated at the thought of having to apply for a new benefit – but they should also be fearful of losing the many extra benefits that they use, with no easy route to prove their need once the DLA rug is pulled from under us all.

[Crossposted to Where’s the Benefit where I am one of the team.]

It seems that Disability Living Allowance (DLA) can be quite misunderstood. Even government ministers seem to get confused, sometimes referring to it as an “out-of-work” benefit. (It isn’t.) And now DLA, along with many other essential benefits for disabled people, is under threat. Here are a few basic facts, and an illustration of why DLA can be critically important, in the words of those who receive it.

DLA is not means-tested. It is a benefit which exists to compensate the disabled person for the extra costs of living they incur compared to non-disabled people – many examples of which are given below. It’s paid regardless of whether the recipient is in work – in fact, in some cases DLA is crucial in helping the recipient get to or continue in work. There are two parts to the benefit – one covering care needs, and the other relating to mobility. The money is paid directly to the disabled person for them to use as they need.

The government has already said that, although fewer than 1% of claims are thought to be fraudulent, they intend to reduce claimants by 20% via new medical tests. Read the comments below and see if you can imagine one in five of these people having to manage without it. The government may not wish to pay them, but their needs will not disappear.

I spoke to a variety of people who, like me, receive Disability Living Allowance. Here are a selection of comments illustrating its importance.

Education and work:

“DLA means I can sustain myself enough to study. It also pays for taxi fares to university.”

“I damage clothes more quickly than other people because I fall over and sometimes have to crawl; DLA means I can buy new clothes and maintain a professional appearance in my work.”

“I spend my DLA on my education – I need a room on-campus (which is more expensive than alternatives), photocopying and books. I have mental health issues, and that course literally saved my life.”

Food and bills:

“My DLA is spent on food – from ready meals to takeaways – because I’m not able to cook for myself.  Without DLA I’d rely on friends to cook for me or I’d simply go without meals.”

“I have extra costs such as delivery charges from supermarkets, but also I can’t buy the cheapest food because stores like Lidl and Aldi don’t deliver. So my shopping costs are more than for someone who could manage to get to the shops themselves.”

“I am so tired from my job that when I get home I can’t make food for myself. Takeaways are expensive and they have a minimum order price. DLA covers the difference.”

“My electricity costs more than most people because I need the heating on to reduce my pain levels, and I need to recharge my wheelchair. DLA helps pay for the difference in my bills.”

Transport:

“All of my mobility allowance goes to pay for a Motability car – it’s the only way I could ever afford one. But there are still other costs like petrol, so some of my care allowance has to go towards that, because I have to get around.”

“If my money was stopped I would not have a car and would be stuck at home all day while my partner was at work.”

“Until my DLA came through I had to cancel hospital appointments because I couldn’t justify paying a taxi fare except in emergencies. This continued for several months…”

“Without DLA I would literally be house-bound. I wouldn’t be able to get out at all.”

Independence:

“My DLA gives me back some control, it’s the one thing that doesn’t rely on someone else being willing to help me.”

“When my partner and I lived apart, I qualified for a lot more benefit, free prescriptions and so on. Now we live together, his job means that we get less money overall. This means that my DLA is even more important – so I have some income of my own.”

“I have a cleaner who comes every week – she does tasks that I can’t manage myself. It gives me pride that I can manage my responsibilities even if I’m not doing them myself.”

“The most important thing that DLA pays for is my independence. It means I am more equal to my partner and don’t have to keep asking them for money. It means I can pull my weight.”

“I’m recovering from mental health problems and I’m rebuilding my life. I use my DLA money for things like basic furniture and decorating costs. It’s providing much needed support in many areas. I also use it for help with transport. Otherwise I would be in debt.”

And finally…

“If I didn’t have DLA I simply wouldn’t cope. I have cut back on everything as it is, we don’t have any luxuries, so there is no room for me to exist with less.”

“Without DLA I would not manage at all. I would be forced to bed and to beg for assistance from my loved ones, but this position is unsustainable…”

Those last two comments are frightening but demonstrate how tightly many disabled people have to manage their finances and how close to the edge they are operating. They simply cannot imagine a way to cope if this money was taken away.  Essentials such as meals, prescriptions or heating would be at risk if DLA was cut back, and disabled people could be stuck at home, unable to access jobs or education.

Everyone I heard from relied on their DLA payment for independence and quality of life; it was as simple as that.

It is critical that this benefit is protected in its current state and that the government’s proposal to reduce the number of claimants by 1 in 5 is robustly opposed. The treasury may need to make cuts, but when it comes to Disability Living Allowance there is simply no room to manoeuvre.