Make Her Stop

Scrolling through an otherwise innocuous twitter feed this afternoon, when up popped a tweet from Disability Now about the latest antics of Heather Mills.

Now, before continuing, it's only fair to point out that, generally, the online disability community regard Ms Mills as a bit of an embarrassment. Her grasp of disability politics is only marginally superior to that which you might expect of a concussed duckling. The major difference being that the duckling isn't trying to market herself as a disability spokesperson.

Usually it's easy enough to ignore her in much the same way as you might ignore a toddler who is acting up just to get some attention. But then every so often, she ups the ante enough to make me reel in shock that a person can be so stupid.

Yup, Heather says she is making a show where non-disabled celebrities pretend to be disabled so they can, in her words, "see what it's like to live with a disability." Worse, she then goes on to equate this with wheelchair use. All together now:

A Wheelchair Is Not A Disability.
A wheelchair is a piece of equipment you might use if you have any one (or more) of a thousand conditions which involve impaired mobility. Disability is what happens when, despite having appropriate equipment such as a wheelchair, you are still faced with more barriers to your day to day life than one person should have to deal with.

By voluntarily using a wheelchair for a week, you learn what it's like to use a wheelchair for a week, safe and certain that it's only for a week, and that if there was an emergency - or if you simply got bored of playing the game - you could just stand up and walk away.

You don't lose your job in a week. You don't lose contact with your friends in a week. You don't spend months on an NHS waiting list in a week. You don't have to try and co-ordinate moving house in a week. On the other side of the coin, you don't develop your upper body strength very much in a week. You don't become part of a community in a week, or learn the myriad tips and tricks for wheelie life.

In short, there is very little to be gained or lost through playing at "Cripples" for a week. At least, until Heather gets involved...

"We would also get a chef like Gordon Ramsay, blindfold him, and put him in the kitchen for a week."

Leaving aside what Ramsay himself might have to say about it if she tried such a thing - that's just dangerous. If you were to suddenly lose your sight, you would be rushed to hospital. You would be there for a while so that they could attempt to restore your sight, during which time you would slowly get used to the disorientation and to doing certain things by touch. If they could not restore your sight, you would (or at least, should) not be discharged until you've been assessed on how you will manage your basic needs at home, whether there is someone to help you manage, and referred to Social Services and an occupational therapist. You don't get dumped into the middle of a kitchen full of gas burners and sharp knives and told to get on with it. That's a reality-tv experience and has nothing to do with learning about disability.

A small glimmer of hope. The article tells us that "Although she said that the programme is in production, Mills did not reveal its transmission date or which broadcaster had commissioned it." So there is a chance that she's spouting pure, unadulterated rubbish. It's sad that this is the best-case scenario.

Definition of Relief

Regular readers will be aware that I've been waiting for the results of my DLA renewal. To recap, that's the disability benefit that is received regardless of work or income because it is supposed to help cover some of the essential disability-related additional expenses like equipment and transport.

I've been very anxious about this. Partly because of the circus that was my last renewal and partly because my existing award was due to expire at the end of this month, and I did not need my first few months of business to be dogged by personal financial struggles as well.

So this morning, when I heard the post land on the doormat, I wobbled out to the hallway, saw the unmistakable DWP Brown Envelope, reached for it, fell over, and was ripping it open almost before I'd hit the floor...

I have an indefinite award, at the same level I've had for the last two years.

In DWP-speak, indefinite is the word they use because the word permanent doesn't allow for people recovering, and the leaps and bounds of medical science can be unpredictable.

If I get better, then I must let them know and they will reduce the award.

If I get worse, then I must let them know and they might increase the award (or they might decrease it, because who knows where the political goalposts will be?).

If someone has too much time on their hands, they might decide to review my claim at any point just for squits and giggles. The government retain the right to put me under intense covert surveillance (google "Operation Ramesses" (sic)) and generally treat me like a criminal whenever they feel like it. That's par for the course of any kind of claim for assistance.

But it means they acknowledge that I've been in the same condition for long enough that I'm really not likely to change, and that there is little point putting me through the expensive bi-annual mill of renewals and medical assessments and appeals and suchlike. The level of assistance I receive can now be considered as permanent as my condition.

I'm shaking like a leaf. I've got the letter folded open here on my desk so I can keep looking at it to check I haven't mis-read.

If I was a more spiritual person than I am, I might believe this was some sort of reward for having finally taken the plunge yesterday and registered as self-employed. Which was going to be the topic of today's blogpost, but the DLA thing has kind of overwhelmed it.

Getting on with 2010

Life has been (mostly) nicely full since my last post.

The biggest nice thing was that Steve and I went on a little weekend jaunt to the top left north-west corner of Wales. There wasn't a special reason beyond "getting out" and in many ways I think that made it even more enjoyable. We were supposed to have another friend with us, but unfortunately he had to drop out at the last minute... in retrospect that's probably a good thing because I don't think Steve's car was built to hold more than two adults for long journeys.

So we spent Saturday trundling as far as Bangor, where we stopped overnight at a Travelodge, and then on Sunday we picked up a load of leaflets from the foyer to see if there were any particularly appealing attractions. Which there were, but for some unfathomable reason most of them aren't open until Easter. Tsk. So we decided to take our trek to the top left north west corner to extremes, and headed over the bridges to Anglesey, and thence to Holy Island.

On the way we stopped in at Llanfairpwllgwyngyllgogerychwyrndrobwllllantysiliogogogoch and got a couple of postcards, because we couldn't not. The sun was shining and it was a beautiful day, so we then continued on to the bird sanctuary at South Stack. There was wheelie access right up to the clifftop (and probably right off the clifftop if you weren't careful) and it was lovely to be able to sit there watching the sun, sea, waves, lighthouse, birds, boats, and also looking out for our own noses falling off with frostbite because it was COLD! Still, that's only to be expected for January.

Steve tucked me back into the car to defrost while he ran about taking more photos. I got out my phone to amuse myself and was a little disturbed to find a text message from my mobile phone provider welcoming me to Ireland and advising me of the Euro Roaming Charges. I don't know whether to be peeved at the lack of local signal, or be impressed that my phone was getting a signal from over 60 miles away.

The rest of my enjoyment of the beautiful scenery was from inside the car, but it most definitely was beautiful. We found time to stop at Trefriw Woollen Mills which was nice in a "yay! found yarny!" way, but again, most of the features apart from the shop were closed up for the winter.

Poor Steve obviously had sole responsibility for the driving which meant that he was as shattered as I was by the time we got home. A substantial part of last week was spent with me taking it as easy as possible during the day, to make sure that when he crawled in after work in the evening I wouldn't have to ask him to do as much.

Then on Friday, just as we were picking up again, we both came down with the latest illness sweeping around his office! It was a really nasty one with fevers and yuck - one of those ones where you decide you can't cook, order a takeaway, and then it arrives and you just look at it, knowing that you should eat, but unable to bring yourself to actually do it. Happily it was just a two-or-three-days one and we're both feeling a lot better now.

The business stuff is all but ready to go now, thanks to the help of the Prince's Trust. There's still a few chains to be completed, silly things like: I want to pay for my insurance, domain name, etc, from the business account; I'd rather not start charging things to that account until I'm certain that the capital I paid in has cleared; I won't know if it's cleared until I've had a look in the online banking; I can't look at the online banking until I have all my login details. But the bits and bobs are in place. Mainly I just have to man (woman?) the heck up and take the plunge of registering.

DLA exam

This morning I had my medical examination for my DLA renewal.

A big thank you to everyone who left such supportive and encouraging comments on my last post - it really helped me to stay calm about the whole thing.

The doctor arrived on time and stayed for just under an hour, which is good as the examination is supposed to take between 20 and 60 minutes. He came across as a pleasant and professional man. He was patient when I was struggling with things and gave the impression of listening to what I was saying. He took an awful lot of notes and appeared to be trying to understand, although of course he also made several efforts to catch me out. He did seem a little perplexed about why he was being asked to examine me for a renewal rather than a new claim.

I don't know if he believed a word I said and I have no idea what he wrote down. But on the whole I am happy with how the examination went. My PA was also present and she felt it had gone well - that I had presented openly and honestly and that I had made my difficulties clear without exaggerating.

And now I can stop worrying until the next letter turns up.

Procrastination... and breathe

Ok, I am admitting right now to all of you that I am procrastinating on the self-employment front.

I will do it and I am making progress. I'm most of the way through my online business course; I have a Marketing Plan and about three-quarters of a Business Plan; I've written a lot of the text for my website. But I'm having to really push myself over every step.

It's not the work involved. The work is not a problem. The trouble is that I have my self-image, my little mental picture of me... and then I have a little mental picture of A Self-Employed Businesswoman... and there's no way I can manage to superimpose the two. I'm not a shoulder-pads kind of girl, you know? That's part of why I'm setting up as an assistant... I keep wondering who exactly I am trying to kid by calling myself a business.

Anyway, there was a major panic this afternoon when my new Business Advisor asked me about my planned start date and told me that the "HMRC definition is once you have set up your website or have got anything with your name on it – i.e. business card, letterhead, leaflet, etc you are in the eyes of HMRC starting to trade," and I went AWOOOGA! because I've been getting ready piece by piece and have, for instance, set up a business banking account and a PO Box weeks ago, but I don't yet have several other important things like insurance or a tax reference number.

Thankfully I decided that if something is causing me that amount of upset, I should seek a second opinion, and HMRC's self-employment helpline allows me to go straight to source. Turns out it runs from when you have the ability to provide your goods or service and are "open for business". So in my case, since I would currently be telling a potential customer "sorry, I'm not quite ready yet," I have not started to trade, no matter how much of the setup I've got in place.

Phew.

However, it has given me a bit of a kick up the bum about the whole thing. As a result of which, I am eagerly awaiting some insurance quotes and doing my best to remember that all I have to do as a first stage is meet the legal minimum requirements - nobody expects me to become SuperBusinessWoman overnight and the shoulder pads are truly optional.

Medical Examination

So, Disability Living Allowance, also known as DLA and a great source of both help and stress. To recap, this is the money given to disabled people regardless of income or work status, to help meet some of the unavoidable extra costs associated with disability, from wheelchairs to incontinence pads to home delivery fees to Meals On Wheels. It's split into Care and Mobility components, awarded at different levels depending on the extent of difficulty you have with each of these aspects.

Now, a quick timeline. I applied for DLA again in February 2008. I was turned down and asked for an appeal. This took until October 2008 to arrange. I won and a backdated award was made, for two years starting from February 2008 when I had first applied. So the award expires in February 2010.

As such, I got a renewal pack in October 2009 - they give you plenty of time so that you have a chance to access support from the Citizen's Advice Bureau or similar organisations. In November I sent off the completed renewal pack, including:

• Their 40-page form, completed with the basic and general answers.


• A typed 26-page document giving the more detailed answers they ask you to provide to their questions, including information about good and bad days, equipment I use and how I use it, support I receive and so on, because these answers just don't fit into answer-spaces the size of a credit card on the form.


• A copy of my current medication and equipment prescriptions.


• A copy of my Social Services care plan and contact details for my social worker, occupational therapist, GP, Access to Work adviser and everyone else associated with my disability needs.


• A statement from Steve as someone who lives with me.


• A statement from my PA as a person who is paid to look after me.


• A medical report from the ME/CFS specialist who formally assessed and diagnosed me.

In addition they will have written to my GP for her opinion, and she will have written back in support of my application, just like she did last time.

But they say that they "do not have enough information."

They want me to be examined by a doctor from ATOS healthcare next week.

I'm not entirely sure what that doctor is supposed to discover in his 20-60 minute session that has not already been provided in my own testimony and corroborated by several different types of person associated with my care. Especially considering that there are no easy or visible diagnostic criteria for ME/CFS. It's not like counting the limbs of someone who claimed on their form to have had two legs amputated and going "yep, looks like you are right after all". Variable and invisible conditions are a little more complicated.

He will be coming to my house, so I have a glimmer of hope that he just wants to check that I do have the assistive devices I claimed to use and that they're not covered in dust, that my to-do list doesn't include renewing my subscription to Hill Walker Weekly, and that I say "ow" often enough.

But even though I tell myself this... even though I know I successfully appealed once and can do it again if I have to... even though I know I have not lied on my forms... even though I know the doctor will get paid regardless of what he says about me... I've known a few too many people with a few too many horror stories about medical examinations for benefits purposes, up to and including doctors getting a claimant's condition wrong, writing down things they had not asked about and could not possibly have observed, bullying claimants into signing blank forms, and in one memorable instance, ticking the wrong gender box.

I think it's like when people are pregnant, and everyone comes forward with the stories of six weeks of labour, of a hundred stitches inside and out, of the midwife being busy and the cleaner having to do an emergency C-section using only a biro... and even though you know it probably won't happen to you, it preys on your mind. What I could do with right now, if anyone has the time, is a few comments saying "I had an ATOS medical examination, it wasn't a problem, the doctor was on time, he was nice, he listened to what I said before writing it down, let me take my time, and a few weeks later I was given an indefinite award at what I feel was the correct level."

Please?

Winter Heating

As some of you may have noticed, it's been rather chilly in the UK lately. At the risk of stating the obvious, this has an impact on people who can't keep themselves warm properly. There are all sorts of reasons why a person might have trouble keeping warm, but the main ones are connected to age or illness. For instance, there are conditions and medications that play havoc with your 'internal thermostat', there's the issue of poor circulation, there's the issue of being unable to move about enough to adequately boost your circulation, and of course there's the issue of poverty, which disproportionately affects elderly and disabled people.

Never fear, the BBC reassured us:

... the government said it would be making cold winter payments because temperatures had been low enough for vulnerable people to qualify... ...Minister Helen Goodman said: "The payments are automatic so everyone entitled will get them and should not worry about turning up their heating."

But who is entitled?

Well, there's two different payments. The first is the Winter Fuel Allowance. This is for all UK residents over the age of 60 and is made every winter. It is automatically paid for anyone on a state pension or pension credit, other people who are old enough can apply for it separately regardless of wealth. The payment is between £125 and £400 per person depending on your exact age and how many people are in your household, and has an effective minimum of £250 per household.

The second is the Cold Weather Payment. This is more complicated. More people can get it. There's the pensioners (again, and on top of the Winter Fuel Allowance already recieved). Then there's people on Income Support, Jobseekers' Allowance or ESA who also have a child under five, or a pension or disability premium added to their basic eligibility.

However instead of being paid every winter, it is only paid when there has been a "period of extreme cold weather", defined as seven consecutive days on which the average daily temperature at your postcode's weather station was zero or below. If this happens, a payment of £25 is added to your benefit for each seven-day period.

If there are six days where the temperature is below freezing, and then one day where it creeps up to one or two degrees above, and then another six days of freezing - no payment. You do not need extra heating in this circumstance.

If your child over five is sent home from school, and you have to heat the house during the day for their sake - no payment. You do not need extra heating in this circumstance.

If you are disabled in a way that affects your body's ability to keep warm, but instead of being at home and claiming benefit, you are working from home (either permanently, or because you cannot get into your workplace in the snow) - no payment. You do not need extra heating in this circumstance.

Today Helen Goodman, the Minister for Work and Pensions, was supposed to answer questions in a No 10 webchat. This was keenly followed over on Ouch! and Twitter and unsurprisingly we were all left disappointed. Polite, well-typed and specific policy questions like "What is the specific reason for Winter Fuel Payments not being available to the most vulnerable disabled people as well as pensioners, please?" were ignored in favour of the type of questions that are already very easily answered with a quick search of DirectGov, the type of questions that allowed the Minister to promote the Warm Front Scheme, or questions about individual circumstances such as this gem:

melita:
hi this Cold Weather Payment is it for everyone as on the directgov web page its as if u have kids under 5 in witch i have 2 kids under 5 so would that mean i get the Cold Weather Payment x

Helen replies:
Melita,
If you are on Income Support and you have a child under 5 years old, you will get a Cold Weather Payment. The same applies if you are on income based Jobseekers Allowance, with a child under 5.

Quite how people like "melita" have the capacity to find out about, submit questions to, and watch a government webcast, yet were unable to contact their local Jobcentres to check their specific eligibility, is beyond me.

Disabled people were told that they already get Disability Living Allowance (DLA) to pay for increased heating costs. It's quite astounding the amount of shortfall that DLA is meant to cover. As Lisy put it:

We're only granted DLA for "care" and "mobility". There's no "heating component" of DLA or an "any other costs" component of DLA. Please explain how we're supposed to pay for heating if all our Mobility component is taken by Motability and all our care component is taken by Social Services?

Another question there that, unsurprisingly, the Minister chose to not answer.