Flash Says…

Posts Tagged ‘disability living allowance

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.

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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.

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

This week, the Institute for Fiscal Studies (IFS) published a report assessing the impact of June’s budget1. It was no surprise to find that the poorest and disabled people have been hardest hit by benefit cuts in a budget that is far from “progressive”.

We know that disabled people often have a low income – the Joseph Rowntree foundation found that three out of ten disabled people of working age are living in poverty2. With this background, the IFS report makes for grim reading.

Their projection illustrates that as a result of benefit changes, the poorest 30% of people will lose 2% of their income. For those who already live hand to mouth, this could be hard to bear.

There are three ways in which we will be hit hard: these concern changes to Disability Living Allowance (DLA), Housing Benefit and the way that benefit increases are calculated.

Firstly, from 2013 there will be reforms to the way DLA is assessed. We do not know much about how this will operate or whether it will affect those who already have indefinite awards, but the Government’s Budget policy costings document says that the result will be to remove DLA from around 20% of claimants. As only 1% of claims are estimated to be fraudulent, surely the other 19% will be people who need help but are turned away. As it is estimated that only 40-60% of those eligible for DLA actually claim it 3 this is a very harsh cut.

There will be various changes to Housing Benefit, but the killer clause for disabled people is “Reductions in housing benefit for those of working age living in social housing that is under-occupied” – the government trumpets that this change is predicted to make a saving of £490 million in 2014-15.

This rule makes no consideration of disabled people’s needs – for example the requirement for an extra bedroom for carers to sleep in, or if a couple (or children) are unable to share a bedroom because one of them is disabled. My own parents are in this situation – my father has a special bed on the ground floor, while my mother sleeps in the marital bed upstairs. But it’s just a numbers game to the government – count the heads, assign the bedrooms. Simple, right?

A parliamentary briefing paper on Housing Benefit4 says “The Department for Work and Pensions (DWP) have stated that they expect the additional needs of disabled people to be paid for by local authorities from Discretionary Housing Payments but this is not working in practice.” This is a disgrace – discretionary payments can never be relied upon (particularly as they are meant to be temporary, and come from a limited pot of money) so it is worrying to consider how many disabled people will be penalised for “under-occupying” a property, when in fact they need all of the rooms in their house.

In addition, the IFS report goes on to say that “Local Housing Allowance rates will be set at the 30th percentile of local rents rather than the 50th percentile. This effectively means that LHA claimants will only be able to choose from the cheapest 30% of properties in their local area of the appropriate size for their family rather than the cheapest 50%.” This could be a problem for any disabled people who need a ground floor flat – as I discovered when I was house-hunting, they often carry a premium for being a “garden flat”. Housing benefit won’t stretch that far. And what about my friend Sam, who needs a town centre flat because she can’t access public transport to cheaper houses in the suburbs? Yet again disabled people are being penalised by circumstance.

The final way in which the budget is unfair to disabled people is in the way that year-on-year benefit increases will be made. There are three indexes on which inflation can be calculated, and the government is changing the index used for calculating benefit to the meanest one – meaning that we can look forward to an even more meagre increase to our benefits each April. I’m surprised that the government hasn’t axed our traditional £10 Christmas bonus!

This budget is all but “progressive” – as the IFS has concluded. It’s frightening to consider how many disabled people will be pushed closer to the breadline, if they aren’t there already. Of course, we knew this already when cuts were publicised, but it’s good to have it confirmed by an independent research institute. Perhaps now the government will have to ensure that disabled people are not disadvantaged by this budget. If not, how long before they have blood on their hands?

1. The distributional effect of tax and benefit reforms to be introduced between June 2010 and April 2014: a revised assessment
2. UK poverty falls overall, but rates increase among disabled people
3. A brief guide to the world of tax for disabled people
4. Housing Benefit: Size Criteria and Discretionary Housing Payments

Disability Living Allowance is a mystery to many disabled people. You might not know who is entitled to it, or feel you are “not disabled enough” to qualify. However, the benefit is there to assist people who have mobility issues or regularly need someone to help them. If that could be you, or you know someone who might be eligible, then you should read on…

Let’s get one thing straight. DLA is a benefit created to compensate disabled people for the extra costs they incur compared to able-bodied people, such as the need to cover taxi fares, or the cost for someone to come in and help clean your house. DLA has nothing to do with whether you are in work, or are able to work. There are many people in work or running businesses – like myself – who are legitimately claiming DLA.

Nor is DLA means-tested, in fact it is the only disability benefit of which I am aware for which income is irrelevant. Higher living costs are incurred by most disabled people regardless of their income or ability to work and that is what DLA recognises. If you consider yourself disabled, do you need any help around the house or outside? If so, you could be eligible for DLA. Check out the criteria at this law centre website. Note that only people under 65 can apply; if you are older, you might be eligible for Attendance Allowance instead.

If you are considering applying, pick up the phone right away! Call the Department of Work and Pensions on 0800 055 66 88 (8.00am to 6.00pm Monday to Friday) for a form. Any DLA award will be backdated to the day you made the request. Online applications cannot be backdated so any “thinking time” while you work out how to answer would not be recognised. For this reason I recommend obtaining a hard copy and applying on paper.

As for the application, I am not an expert, just a lay person who happens to be someone with an impairment and so is familiar with the DLA forms. I can only write from my experience as an applicant who was awarded, I believe, an appropriate award for my needs. The purpose of this article is to offer advice on how to succeed in the initial application, based on my own experience.

I must be honest: applying for DLA is depressing. It is a laborious task, drawn out over many pages, in which you are invited to focus upon the things you can’t do, a dispiriting task at the best of times. Set aside plenty of time to complete the form, in chunks if necessary – you will be led into the mindset of assessing where you need help and struggle to manage, so do make sure to give yourself some time off to relax and regroup after completing these very negative questions. You will need it.

For every question, it’s useful to say what your problem is with the specific task, how you need help, and how DLA can provide it.

So if you are asked whether you can go out and about you might answer:

  • I am unable to go swimming as I am frightened of being in the same place as strangers.
  • I need someone with me to reassure me and to help me get home safely.
  • If I had DLA I could pay for a taxi so I could avoid other people on the way there, and I could pay for someone to come with me and keep me calm while in the pool and changing rooms.

Or you might be asked about cooking, and answer

  • I am unable to make myself a cooked meal as my wrist pain means I cannot chop food and my back pain means I cannot stand up for more than 5 minutes.
  • I need someone with me to prepare food, chopping it and standing over the stove while it cooks
  • If I had DLA I could pay for someone to come and prepare food for me. They could make me a cooked meal and wash up the dishes afterwards.

You can use this format regardless of the nature of your impairment, of course. It is:

  • I cannot….
  • I need…
  • If I had DLA, I could…

This structure to question answering, which proved successful for me, was inspired by information from a group formerly known as BHAS – Barton Hill Advice Service. That group now appears to be part of Barton Advice Centre in Oxfordshire, and unfortunately their very valuable advice guides have now disappeared from the internet, so I am unable to credit them further. However, I feel that their advice is still valid and this is the best way to complete the forms; it gives the Department of Work and Pensions every reason to tick the box!

Now that you know the format to take when answering questions on the DLA form. I would suggest you initially step away from the forms and brainstorm. Consider the issues you have inside the house / outside the house / going out e.g. cinema / on public transport, and work out how extra money could help you to overcome these problems, then fit it to the form. Do answer their questions but don’t be afraid of repetition across different sections. There is bound to be some overlap between questions, so just give them all the information you’ve got at every stage. Help the adjudicator justify making an award!

If you use any equipment to help in your daily life (whether that is a walking stick or a magnifying glass), or you have developed a workaround to a particular task, remember to dismiss this for the application. Step back from your situation and look at it from the outside. If you are doing anything differently from an ordinary person in order to manage, you need to put this on the form, and to state what you could actually achieve without assistance. Also, if you have been offered equipment which is not appropriate do explain why alternatives are not suitable.

You are also able to submit extra supporting information, and I would strongly recommend you do so. In my case, I submitted a diary (7 days in my life, it had things like “I would like to do X but I have to rest because I spent all my energy earlier so I am unable to manage …” “I need to pee but have to crawl upstairs on all fours because …” “I am in pain and so I can’t stand for long enough to make lunch for myself, instead I have to eat a piece of fruit” etc.)

I also included letters from a variety of people: my flatmate (who had to take the bins out and do stuff for me around the house), my partner (who had general experience of my needs) and my mother (who described a day trip and all the planning that went into it to ensure I didn’t have far to walk between rest points). Any of this kind of personal information can only help to bring your situation alive in the adjudicator’s eyes – do send it!

It’s all about ticking the right boxes.

Many DLA guides say “write about your worst day” but I believe you should only write about an average day (while mentioning “but on my worst days I cannot…”) otherwise you may be found out, especially if what you say is not backed up by your GP. And there we hit upon another issue – many GPs do not realise exactly how life is for us.

Face it, how often do you tell your GP about the day to day pain and issues you experience? After all, you are unlikely to ring up and report “I’m in pain again today!” However if you are considering claiming DLA, I recommend that you write to your GP with a list of all the tasks you find difficult and need help to achieve. Then book an appointment with your GP to get these things formally on record. That way, you can name your GP as a referee on the DLA form confident in the knowledge that they realise how much pain you are in, how limited your walking may be, how you cannot lift objects heavier than a few kilos, how terrified you are in areas you do not know, or how you need someone with you to remind you of the task for which you set out. Be sure your GP understands your issues in explicit terms and will then be armed to support your application for DLA. Tell them that you are applying and ask for their support.

Above all, don’t let the process get you down! I know how dispiriting it can be to have to consider what you cannot do, but it is necessary in order to get a DLA award. If you find the process depressing, seek help from a partner, friend or family who can offer support. But please, don’t give in! The process may be unfairly arduous, but may ultimately mean you are provided with an extra few thousand pounds per year. DLA can also open other doors – depending on the award, you may automatically qualify for a blue badge, travel pass, or be able to take an assistant with you for free when visiting an exhibition or the cinema.

DLA will be paid to you whether or not you actually use it for the assistance you specify on the form. Nobody will be checking up – once you are entitled to it, the money is yours, to spend as you see fit. Personally I find it enabling – spending mine on a weekly cleaner, and minicabs to my nearest accessible station, both things that I could not justify out of my own pocket but which have made my life easier, and more equal to others.

Whatever your financial situation, Disability Living Allowance is money which can help. It is there to compensate you for additional expenses caused by your impairment, and you should not feel guilty when you receive it – just relieved that your needs have been recognised and a small step towards equality has been made.

Where can you find out about disability benefits? Where is it advertised, who tells you, and how are you pointed in the right direction when you start to find it harder to manage?

I am wondering where I first heard of Disability Living Allowance, the main benefit for disabled people. DLA is not means tested as it is intended to compensate for the extra living costs which are incurred by everyone who has additional needs, no matter what their background. It can be a lifeline, but nobody ever tells you that you might qualify, especially if, like me, disability has crept up on you slowly throughout your adult life.

I think I must have heard of it through my family – my brother gets DLA to help with / compensate for his learning difficulties, and I remember my mother urging me to stop being stubborn and apply for everything to which I was entitled.

At this point, I need to give you a little background. Some people are born with conditions which mean they are disabled for their whole life. Others might suddenly become disabled, for example in a car crash. I had a normal childhood, but at the age of 12 dislocated my knee. Since then things were not right, and grew worse – it’s hard to nail down, but I remember asking for a ground floor room in halls aged 18, as I was beginning to find stairs hard. I also recall boyfriends from my university years nagging me to carry a stick, as it was unfashionable but made my life easier.

By the time I received a diagnosis of Ehlers-Danlos Syndrome, a connective tissue disorder which makes my joints too loose, the horse had well and truly bolted. The stable door was irrelevant. I was already a wheelchair user and now disability was a part of my everyday life, although a diagnosis was useful in order to better understand myself.

My consultant kindly said he would write me a letter for DLA if it helped – but that was in 2008. By that time I’d been dislocating for 20 years, needed “reasonable adjustments” for 14 or so years, and had already been receiving DLA for 6 years.

I think Disability Living Allowance is a great benefit, actually. Of course it’s not enough to compensate for all my extra needs (it just about covers my cleaner dashing about with a hoover for a few hours, and a few taxi rides here and there) but it IS a recognition, and it is nice to get something which is not means-tested, acknowledging that our additional needs will have extra costs no matter how much or little we earn. I am lucky enough to have an indefinite award and the reliability of almost £400 arriving every 4 weeks is a lifeline, even though my husband and I are not borrasic. It means that whether I have been able to work or not, I still have some money to contribute to the family funds, and thus I still have my pride.

If only more people knew about DLA! Also, I am aware that I was extremely lucky to get an award that accurately reflected my needs, for an indefinite period, at first attempt. According to my disabled friends, this is very rare. Some apply but are turned down and don’t appeal, but many who do appeal will win. However, the award may be for a limited time, so the process is barely over before you have to re-apply and go through it all over again. It is shocking that disabled people, who have the least energy of anyone, have to jump through hoops and fight for their rights in this way.

Once I received DLA I still didn’t know about half the doors that had opened, even though many were automatic. After attending a focus group with other disabled people, I was inspired to create the website www.enabledpeople.co.uk, to let everyone know about other concessions and entitlements.  Sure, I saw leaflets about disabled railcards when I was in a station, but I didn’t know that if I travel in my wheelchair I can get 50% off the standard fare – no railcard needed. Funnily enough this isn’t advertised. Nor is the fact that you can travel for free on London Buses in a wheelchair. Plus of course cinemas, theatres, gig venues, festivals, and museums will not go out of their way to let you know that you can get a carer in for free. Why would they? All that lost revenue! But why should I have to find the energy to ask for a discount or ring around to find out whether they can accommodate my assistant?  It is incredibly frustrating!

However, I am very grateful for my DLA. It covers the cost of a cleaner and means that I feel some sense of pride in the house, because my cleaner is only doing what I would do myself, if only I was more able. I feel that I have contributed.

Disability Living Allowance is, as far as I know, the only disability benefit that is not means-tested. And although my husband earns a good salary, it is essential – it means I can justify using a taxi or hiring a cleaner, and so genuinely making my life easier.

And that, surely, is the point.

Spread the word!