Flash Says…

Archive for the ‘Politics’ Category

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.

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The Liverpool Care Pathway has been in the news lately. It’s a care path for people who are dying, whereby invasive treatment is withdrawn and they are left to die peacefully. At least, that’s the principle. It isn’t what my experience found.

A few years ago, a relative of mine was put on the Liverpool Care Pathway. It was explained to my family that he was expected to die, so invasive treatment would be withdrawn, medicine would be stopped (as it wasn’t working, so it was redundant) and that we would be left in peace to spend time with our relative before the inevitable happened. It was presented as the best, and normal, thing to do, and we numbly went along with it.

Some advantages were clear right away; curtains were pulled around our relative’s bed and a “Do not disturb” sign placed outside, so that we were not interrupted by staff asking whether the patient would be having any dinner. We were given permission to come and go as we wished, beyond regular visiting time – and my family began a vigil so there was always one of us present at the bedside.

The heart monitor, which I’d been watching in a daze, was removed – this was a good thing as I stopped focusing on that, instead focusing on my relative. Medicines were stopped. This was all as expected so far. But then my relative’s feeding drip was removed. We weren’t expecting that! I didn’t consider the drip to be invasive – fair enough if it had fallen out, then I could understand the need to discuss whether it was replaced. But it had at no point been made clear to us that liquids and nourishment would be removed – in contravention of the relative and carer leaflet about the LCP, which refers to maintaining the patient’s comfort, and says decisions about food and drink will be explained and reviewed regularly.

This aspect of the LCP has been in the news recently, with one report saying that a patient even rang the police so he could have a drink of water. Should patients be parched and famished as they die? It seems inhumane, something you wouldn’t even do to a dog! If I’d known that my relative’s nourishment would be removed, I would have challenged putting him on the LCP. If a drip is in place why not leave it? No one wants to die thirsty.

After a few days of our 24 hour vigil, to everyone’s surprise, my relative woke up from his coma. Suddenly treatment was reinstated with all haste. And do you know what? He was hungry.

The Liverpool Care Pathway is about convenience, not about care. In my view it’s about making the time before death easier for the living, and for the medical staff who can then spend their efforts on other patients. That’s not good enough in my view, and I’d never support it again.

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 article was published at Where’s the Benefit, where I am one of the team.]

Beryl is a woman in her 50s, who has worked all her life and feels she’s always done an honest life’s work. She works as a piano tuner – a very physical job, but one she loves and had every intention of continuing until retirement. That is, until she fell ill, in May 2010. At that point, she hoped that the system would provide for her…

Beryl went to A&E in May 2010 barely able to breathe and was told she had dry pleurisy and a collapsed lung. She struggled for every step, fighting to put one foot in front of the other, as she could barely get enough oxygen into her body. Yet when she applied for ESA and attended a medical in this state, she was passed fit for work. The Atos doctor did not even notice that Beryl was presenting with a collapsed lung.

Not being awarded a benefit to which she was entitled, while clearly unable to work, put Beryl into a difficult situation. From having been able to afford what she needed, Beryl had to adjust, juggling household money in order to keep her business afloat, paying bills for things such as a Yellow Pages advert taken out in good faith, but with several months yet to pay.

“It’s not the money,” she told me, “it’s that they don’t believe you. Every time you speak to people on the phone they say ‘I’m sorry to bother you, I can hear that you’re ill’ but the powers that be have decided that I’m fit to work.”

Beryl appealed. She wrote to her MP, and sent a bundle of supporting evidence to the Job Centre, including letters from her GP and her consultant stating that she could barely walk or breathe, and that it would be at least a year before Beryl could hope to have recovered, if indeed she would recover at all. The appeal was heard in December 2010. However, they did not consider any of the new evidence – it was a mere rubberstamp exercise, to confirm the original decision. Although Beryl was too weak to leave the house, now relying on neighbours to bring food and help her to manage, the Job Centre decided she was fit and able to return to work.

Fortunately, Beryl was awarded Disability Living Allowance and a Blue Badge which has helped her to some extent; she won these on the same evidence presented for her ESA application. She has also applied for a tribunal for her ESA, which means that she has to be paid until the tribunal is heard, but she will still have to go through the stress of a hearing to prove entitlement, something Beryl is dreading.

The MP has written asking the Department of Work and Pensions to investigate, and for a copy of their files, but has had no reply.

Beryl is still very unwell. Although she now has a diagnosis, there are no guarantees as to what level her health can be restored – she may be disabled for the rest of her life, and will certainly remain seriously ill for the near future. However, she is still being chased by the Job Centre, because as far as they’re concerned there’s nothing wrong with her.

A lovely lady works all her life, builds up a successful business, pays her taxes – and then the system lets her down when she needs it most. Ten months from when she fell ill Beryl still hasn’t been awarded ESA, but as she can barely manage to make a cup of tea she certainly couldn’t return to work. This is the system we trust to support us when we need it most. The system, quite frankly, is screwed.

I have followed up to several stories I reported in the last year. Here are the updates.

The new Routemaster – if this is the future, I’m not on board
I revisted the Routemaster on 27 January and found that two poles had been moved so that it was now possible to get into the wheelchair bay more quickly. However, it was still a tight fit and there’s a lot of work to do! Transport for All attended and recorded my thoughts for the video in this article by BBC London News.

Life at Glastonbury
I received some lovely comments about my Glastonbury diary but I’m afraid I won’t be going to Glasto 2011… nor any festival, at this point. The fact that my powertrike broke at Glastonbury is part of it – if I want to go to a festival I’ll have to spend a lot of money on a power adaption for my wheelchair so I can no longer book tickets on a whim. I still hope we can go camping in 2011 instead.

Purple, blue or green?
Despite everything I said about my preferences for the green hotel, I regularly end up staying at the blue one because it’s on the same estate as a bus stop, supermarket, and pub – the others are just off the motorway and have no other facilities on site. The blue hotel still doesn’t hoover around the edge of the room. I am tempted to sprinkle glitter to see if they notice.

A guide to the Wii Fit for disabled people
These articles were very well received. I released a new video on 18 Feb 2011 showing two more games you can play sitting down and how to do so. In general, when playing an aerobic game sit on the edge of a chair and tap your feet; when playing a balance game, sit on the board and lean!

Kidnapped by the council
At last a good news story and one I am delighted to report – on Christmas Eve, Steven Neary went back home to live with his dad Mark – hopefully for good.

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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.]

While massive spending cuts hit us all, my council – Waltham Forest – has taken the step of asking its residents where they should make savings. A friendly green website presented me with 8 different categories such as “children’s services” and “your streets” and invited me to make cuts of £55m. Suddenly I realised the mammoth scale of this undertaking – the way that no facilities or services can escape unscathed. However, I gave myself the challenge of maintaining adult social care at its current rate.

Don’t get me wrong; I don’t think adult social care is currently even adequate in my borough. I have been told that if someone can manage to give themself a flannel-bath, then they are not entitled to any kind of care. Of course this doesn’t take account of any inability to cook safely, nor to take out the rubbish or manage laundry! But simply trying to juggle cuts while keeping rates of social care at their current level made me aware of the huge task that councils are facing.

Each topic came with a slider – I simply had to pick categories and drag them to save money, and the website would let me know the impact of my actions. For example as I removed all funding from “Sport & Leisure” I was informed that the impact would be “reduced support to voluntary sector sports clubs, reduced sports activities in parks and estates and reduced sports activities and participation in competitions and events”. While any cutback is a shame, I don’t feel guilty in removing sports activities when compared to helping disabled people to eat, be clean and maintain independence.

However, although there are eight categories and sliders to adjust, it is instantly clear that some categories will have little impact in making the £55m of required savings. After all, the total budget for Housing & Homelessness is just £4.85m. For Culture, Learning & Community Libraries the budget is £6.91m. In fact, if I set 6 of the 8 sliders to zero – removing all funding in those categories whatsoever – I still need to save another £28m. This money can only come from Children’s Services & Education, or the Adult Social Care that I am fighting to protect. In fact if I maintain adult care at its current level, the system shows me that I have no choice but to cut Children’s Services by more than 25%, removing several social workers and forcing large numbers of at-risk children to stay in their home rather than go into care – something which the real world would not tolerate. My changes would even impose the removal of care packages for disabled children; it seems that whichever way I go, with the huge quantity of cuts required, there will be a direct impact on disabled people one way or another.

Because adult social care comprises such a very large proportion of a council’s expenditure, it’s natural that many people will think that this is an obvious way to make savings. And although any such cutback is abhorrent to my mind, it may be essential in order for our councils to stay solvent. I am pleasantly surprised that although adult social care draws so much money, respondents to Waltham Forest’s website have only voted for a 7% reduction in our services. “Only” 7%. If the council implement cutbacks based on this consultation, they will “only” …increase charges for their services (when many service users may be on benefits and unable to contribute financially for their care) …reduce programmes to support vulnerable people and their carers …and make staffing cuts so there will be even longer delays for assessments than there are at the moment.

Wow. Yet when I play with the figures myself, I can see that this may be a lucky escape – no matter how bad it seems, things can always be worse!

Unfortunately, in the three weeks that this website has been running, only 733 people have responded. That’s a quarter of 1% of everyone who lives in the area. How disappointing, that we are offered this opportunity to have our say and shape service provision for the future, and yet barely anyone bothers? It’s not for want of publicity, as a flyer went out with “Waltham Forest News”, a council newspaper delivered to every household in the borough.

I am utterly opposed to cuts of services and benefits which help disabled and older people to remain independent. I am increasingly concerned about these “stealth” cuts made by boroughs, where there is no right of appeal. But even I must admit that I can’t see what the solution is, other than to hope the economy recovers quickly, and that disabled people are the first to have their services reinstated when more funds are available.

In the meantime, I fear hearing about the human side of these cuts. I already see case studies in the local paper, I know people who are struggling, and situations where older or disabled neighbours have to provide food for one another. I know this is already happening on my own doorstep and I am dreading the situation getting worse. It seems the councils are between a rock and a hard place. All we can do is tell them to cut anything, everything, but adult social care.