DLA reform and the Spartacus Report
Posted by: flashsays on: 2012-01-09
- In: Disability | Politics
- 6 Comments
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?
A good year for Leytonstone
Posted by: flashsays on: 2011-12-30
Written for Waltham Forest Guardian where I am a blogger.
2011 has been a tough year for many people as the recession bit, but in Leytonstone there were some signs of hope and a couple of fantastic additions to the area.
First came the reopening of the Red Lion, as a community local which attracted me, my friends and neighbours. Often when I drop in, I’ll run into someone I know, and that for me is part of what a good “local” should be. The pub has some great ales, and holds live music events, so there are plenty of reasons to visit. At last there is somewhere to meet friends and to pause on the way home – just what the area needed.
Second came the new art gallery, The Stone Space. Run by many of the people who organise the annual Leytonstone Art Trail, along with a number of keen volunteers who invigilate during opening hours, The Stone Space is a wonderful venue which has already hosted a number of interesting exhibitions. They change roughly every two weeks. For more information see http://thestonespace.wordpress.com
Next door to The Stone Space is Slate, an art display space in the windows of what used to be Waltham Forest Direct. To mark its new name the display boards have turned dark grey. It’s overseen by artists from The Stone Space, and I’m the co-ordinator. Exhibitions change every 6 weeks, and currently on show is a show of woodblock & linocut printmaking, and jewellery, by Somhairle Kelly. http://www.slate-arts.com/
So it’s not all doom and gloom. We end the year with some new venues which have much to benefit Leytonstone – and hope for 2012.
Wherever you are, I wish you a Happy New Year!
Two versions of me
Posted by: flashsays on: 2011-11-26
- In: Disability
- 7 Comments
There are two versions of me at the moment. When I get a chance, there is normal, competent, capable me. I am enthusiastic, working my way through lots of volunteering work at an art gallery, as chair of a residents’ association and of a disabled people’s mobility forum, and other things besides. I sit at my desk typing away, chugging through a solid to-do list, interacting with friends online, getting excited about what’s to come.
But one or two days a week, there is another version of me. Listless, exhausted and depressed, lying in bed, dizzy if I dare to sit up and weak if I stand. On days like that I fall asleep when I try to focus, and spend much of the time dozing. I am too tired to eat, and it would be dangerous to attempt a shower.
I’ve been that second, soulless, person rather too much lately, as a result of my pain, and the side effects from strong medication. When it happens, it’s impossible to hold onto memories of being capable. It may only be a day since I went to the shops or drove to a doctor’s appointment, but it feels as though I cannot do anything – and never will. I need someone to bring me food and to care for me. I forget how much I can achieve on a good day, because when I’m that ill and exhausted I become depressed. It seems as though my health is going backwards and slipping from my fingers, and that I will never be out of bed or independent again. My life is no longer my own, as I am unable to control it. I end up crying, begging my husband to come home and look after me, and worrying that I am a poor excuse for a wife – meaning that after a hard day’s work my husband still has to walk the dog, do the shopping, and get himself a meal. Little happens in our household unless he does it, and that’s just not fair!
I am writing this to remind myself that good days do still happen. That I have so many achievements recently; singing Handel’s Messiah with my choir, organising an arts display space, running the Pylon Appreciation Society, and even just little things such as getting a few bits from the supermarket. I need to find a way to hold on to these memories on a day when they would be impossible.
On my bad days I moan on social networks such as Twitter, and I am lucky enough to have friends who are hugely supportive, rather than being scared off.
But it’s all very well being introspective. I need to learn new coping techniques. I need to hear how other people get through their worst days. So it’s over to you. How do you manage when you’re having a flare up or relapse, or when everything gets on top of you? How can I stop the feeling that I am losing control of my life?
DLA: just a form filling exercise? If only it was that easy!
Posted by: flashsays on: 2011-11-11
- In: Disability
- 1 Comment
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.
Threat to legal aid for disability benefit appeals
Posted by: flashsays on: 2011-10-31
[This article is cross posted to Where's the Benefit, where I am one of the team.]
The BBC carrys a worrying story today.
“Warning over legal aid cuts for disabled people” the article leads. “Ministers are being urged not to restrict legal aid for disabled people wanting to challenge benefit decisions”.
News comes of yet another way that government is looking to save money – this time on a £2bn legal aid bill which it claims is “unaffordable” – money needed by disabled people to get legal assistance when benefit claims go against them.
This action is being questioned by a group of 23 charities including Scope, Mind, Mencap, RNIB and Leonard Cheshire.
A spokeswoman for the Ministry of Justice told the BBC that the review of legal aid meant that it would be “targeted at the most serious cases”.
I would argue that ANY situation where you could potentially lose your benefits is a “most serious case”. Indeed, given the comments on Where’s the Benefit and my own blog (Flash Says) it can at times be life and death.
Comments on my blog include Roger, who wrote “Since this all began [cuts to benefits for disabled people] I have began to feel totally paranoid and at times have given thought to killing myself mainly due to the daily pain I endure but also due to the uncaring way this government is treating us.”
James Gilbert simply said: “If my benefits are cut I don’t know what I would do”
You only have to read one article – Suicide is part of the disability debate – to know how important it is for disabled people to receive benefits. As well as keeping them alive (funding a roof over their heads, food, heat and light) it also validates that person. “Yes, we know you are disabled. We believe you.”
The nature of disability can be such that it makes it hard to complete benefit application forms. People can have memory problems or find it hard to concentrate. They may have physical problems with writing or typing, or they may not be able to construct clear sentences. I know that when I am struggling with pain I find it harder to think, and this affects my ability to write coherently – it is clear to see when I review letters I’ve written, I can easily tell which were done on a “good pain day” and which on a “bad pain day”. But some people don’t get good days, only bad ones – and yet through this they are expected to complete long booklets explaining why they are entitled to benefits.
Disabled people should of course be supported to appeal when a benefit decision goes against them. It’s already been proven that less than 0.5% of Disability Living Allowance applications are fraudulent, for example – these are the government’s own figures. Therefore, when claimants find a decision goes against them, and come forward asking for help to appeal, they are almost certainly going to be genuine, people who really do need help. Likewise with Employment and Support Allowance.
Commenters on Where’s the Benefit and Flash Says have said that the whole application process (including the fear of perhaps having to appeal) is so stressful that they have decided not to apply and to try to live in poverty without the benefit they are entitled to. Surely people should be given legal assistance to appeal, and feel supported by the government, rather than being forced to live in poverty because they feel beaten by the system?
It is critical that legal aid is available for those who need to challenge benefit decisions. A third of disabled people aged 25 to retirement live in a low-income household – and twice as many disabled people live in poverty compared to those who are able bodied. Without legal support when benefit decisions go against them, this shocking figure is surely set to grow.
Paul Reekie and Christelle Pardo have already killed themselves when their benefits were cut. How many will follow?
Providing this legal aid really could be a matter of life or death.
Managing pain: the trouble with strong painkillers
Posted by: flashsays on: 2011-10-24
- In: Disability | Food and diet
- 1 Comment
Are you wondering why my blog posts are no longer every week? It’s still my intention, but life has taken over. Let me give you an insight into living with, and managing, pain. It’s a daily juggling act.
I take two different painkillers. One, dihydrocodeine (DHC), is what I’ve taken for years. It doesn’t really have any side effects for me, but on the other hand it does very little for me nowadays. It maybe shaves a little of the edge off the pain but not enough that I can sleep, for example. It also takes about an hour to work. The other, oxycodone (oxy), works nicely on the pain. It never removes the pain completely but it reduces it to a background level so I can function and so I can sleep. It also begins to work quite soon after taking it. The trouble with oxy is that I experience two side effects. The first is constipation, which I manage with another medicine. Usually this works ok but sometimes not enough (so I don’t go to the loo for 3 days, and feel ill) and sometimes too much (so I go to the loo 20 times a day and spend that day in bed recovering). I spend about one day a week in bed because of digestive troubles one way or another, or just exhaustion.
The side effect I really hate, however, is lack of appetite. For a gourmand like me, that’s a terrible thing. I’ve gone from loving my food and eating out being a real treat, to having to force myself to eat when every mouthful is horrid.
A few years ago, I saw a programme about anorexic girls who were forced to eat – they did everything to avoid it, and to try and make their plate look clean – hiding food under the table or even in their hair. At the time that was incomprehensible to me but now, faced with even a teaplate of food, it’s how I feel. Each mouthful feels impossible and I just want the food to disappear, but I know I have to carry on until another bite would actually make me throw up. On a good day I can enjoy the flavour of some of it, but my relationship with food has utterly changed. I don’t even fancy alcohol very much and often make one drink last all evening.
So, that’s oxy for you. Sometimes it makes me feel nauseous as well but I can manage that, it’s unpleasant but bearable and compared to the other two side effects is insignificant.
Now imagine you are in bed at night. You wake up. Damn, the curtains are still dark. You reach for the clock – it’s 3.30am. Although you were in bed early, you know you were still awake with pain at 1.30am so the most you have had is 2 hours sleep. Back at midnight you’d taken the DHC but it doesn’t seem to have done much. Now everything really hurts; your knees have a burning pain. Your hips have a more stinging ache, and your ribs ache on the side where you’ve been lying.
You try turning over – grabbing hold of the headboard to haul yourself up, so you’ll put as little weight as possible on your hips and pelvis. Wincing as you turn, you rotate, and this relieves the ache in your ribs for a few minutes. You gently tuck some duvet between your two burning knees.
Turning over hasn’t helped. Light glints on the blister pack of oxy by the bed. You know it will block you up and also make you struggle to eat. But you’ve only had 2 hours of sleep and are desperate for more. What choice do you have?
Unwanted customers? Don’t be afraid to turn them down
Posted by: flashsays on: 2011-10-12
In the current economic climate, you might think that companies should take every customer they can get. But some are just not worth the hassle… Here are the lessons I’ve learned where the relationship just didn’t work out.
Firstly, follow your gut instinct. This week I was called by someone who wanted a new website. He asked if I used Dreamweaver. I explained that no, I didn’t, because I prefer to create website code from scratch. “You don’t use Dreamweaver? That’s ridiculous!” I responded “Well, I have the skills to create a website directly. I don’t use software to do it for me…” “Ridiculous!” he insisted. “You’ll be telling me you don’t use Fireworks next!” He had clearly learned one way to create websites, and assumed it was the only way. I could tell that the conversation was going nowhere, and didn’t even bother to take his details, because he was so stuck in his ways. I just knew that we wouldn’t see eye to eye. Apart from anything else, his comments of “Ridiculous” were mildly offensive – I felt like saying “if you know better, go and do the website yourself!”
In another case, alarm bells started ringing from the off, but I still did the deal. Guy (not his real name) contacted me needing a website for his Private Investigator business. He would check out internet brides, to make sure they didn’t have family elsewhere before marrying someone from the west.
My suspicions were raised when Guy wanted to make a 2 hour round trip to pay me the deposit in cash rather than cheque. However, some customers like to meet me, so I agreed. We discussed his website, and I went away and did the work. We met again so I could receive the balance owed, and this is where it turned weird. Guy confided that he was a wanted man in an Asian country, and needed money from his PI business so he could raise a bribe to stop officials throwing him in jail if he returned. At this point I smiled politely, while thinking “how can I get out of this?”
Several months later Guy asked me to update his website, which I did, but then he vanished without paying. At renewal time his website simply expired. Perhaps he was in prison?
Guy taught me another lesson – don’t be afraid to walk away. That’s exactly what I did when I met another customer, who I’ll call Alex. I’d explained to Alex that I specialised in website accessibility, and would provide him with an elegant but straightforward website with text and static images. This was agreed. We met so that I could show him the demo of his website. The conversation went like this:
Me: [finishing demo] … And that’s your website.
Alex: Where are the dancing animals?
Me: What dancing animals?
Alex: In my head, the website has animals dancing across the screen.
The first three words are the issue here – “in my head”! Having explicitly been told that I didn’t do animation, even making a joke out of the fact that my name is Flash but I don’t create Flash movies, Alex still envisaged that I’d provide some – but never told me about it! We agreed to part ways and he settled up. Later, I saw the next incarnation of Alex’s website – it had pages whizzing in from all sides and tinny music playing – very much “My First Website” – reminiscent of something from the late 1990s. I’m glad we parted company, because I would never have allowed myself to produce anything like that!
What should you do about awkward customers? I think the key here is “be proud of your price” – if they are going to be hugely fussy and need lots of changes to the website, or command a lot of your attention then they will have to pay for the service you provide.
It’s not always like that; I have several long standing customers and I appreciate their loyalty – I hope they enjoy the level of service I give them in return. But if your instinct tells you something’s not right, listen and don’t be afraid to walk away – it could save you a lot of trouble in the long run.
Stratford City Westfield – I think I’ve seen it all!
Posted by: flashsays on: 2011-09-15
Today for the first time I drove to a shopping centre – the new Westfield in Stratford City, which opened two days ago. Just ten minutes from my house, this could be what I need instead of trekking into town for shopping. My only concern was whether it would have those horrible concrete whirly-round ramps, which I’d enjoyed as a child but secretly feared as a driver. It was time to have a go and find out.
On approach I was surprised to see areas for vehicles to stop for searches, but I surmise that the entrance is shared with the Olympic Park. I pity the poor chap whose job is to stand there all day, waving people on to Westfield.
I followed signs, noticing “Best for M&S – Carpark B” so I stayed in the right lanes, managed not to get cross with everyone else changing lane at the last minute, and entered the carpark. Hooray, it was level – no nasty whirly ramps. “I’ll come again!” I thought.
At the barrier a staff member handed me a green plastic chip (about £2 sized) from the machine, which I took along with a leaflet about how the parking operated (you pay on exit, but for a few weeks the first 2 hours are free) and took instruction on where to find the disabled bays – “at the front”.
Lo and behold at the other end of the carpark, on the same level I entered, were several aisles of disabled bays. I dutifully memorised my aisle (213) and followed signs “to the shops”. This led to an escalator down to Waitrose (er, isn’t Waitrose at the opposite end to Marks & Spencer?) where a helpful assistant directed me back through the carpark to a lift by a sign for John Lewis (er, isn’t John Lewis on top of Waitrose?)
I looked back and made a mental note of how to get back to my car from the lift, as well as which floor I was on (Mezzanine). And so down into the shopping centre!
I did indeed come out near Waitrose, but equipped with a map and following signs it was easy to find Marks & Spencer, even though it was at the opposite end. The floor was clean and polished, and I whizzed through in my wheelchair; although there were lots of people there was room to move too. I smiled as someone’s overloaded bag burst in front of me (sorry, but he was laughing too). I even smiled at a child carrying a large Build-A-Bear bag with something pink inside. And I smiled again to see that Lego Store was only full of adults, even though it was well past school kicking out time.
In M&S I had a good experience as a kind assistant not only showed me to the item I wanted, but carried my basket there, and then took it to the tills for me. A second assistant loaded my full shopping bag onto the back of my chair. Now I just had to find my way out.
It can be hard to navigate when your eyes are at other people’s waist heights, but it was a direct route, passing the same shops I’d noticed on the way there (including queues of tweens outside Pulp) and I found my way back to Waitrose. Now to find a lift… hang on, it doesn’t have Mezzanine on it. Just LG, G, 1 and 2. Bother. Now where?
I consulted my map, but it didn’t show lift locations. I tried to retrace my steps, but I could only get a feeling that “I came out near Waitrose, and went past the ad for Foyles, so it’s around here somewhere”. I couldn’t find any manned information points, nor did I remember seeing one.
I spoke to a Westfield branded assistant. He wasn’t sure of the right lift but sent me in the wrong direction anyway, taking me to Carpark A. Not to worry, there were lots of assistants in the carparks and one was certain she knew the way to the Mezzanine in Carpark B… To cut a long story short, she didn’t. However I can now tell you what Carpark C looks like, as well as the rest of the mall! There was a specific moment when she stopped marching ahead and started looking lost, when we realised we were stuck with each other until I found the Mezzanine. I offered her my map and made desparate jokes about wanting to get back to the car before free parking expired. She asked if I could take a travelator but I didn’t want to try this as apparently it’s rather angled, and my chair was already quite “tippy” because of my shopping on the back – and I didn’t trust my guide any more!
We were just about to give up and ask the Concierge when we discovered the right lift at last! And it became apparent that the lass had been confused because other carparks don’t have a mezzanine between LG and G, and other parking aisles beginning with 2 are on level 2, not M. She thought I was wrong, and so led me on a wild goose chase whilst trying desperately to help.
Not to worry. I now fished out the green chip and posted it into the payment machine for validation. There was a low height machine – well done, Westfield! The chip seemed to come straight out again but I was assured it had been validated. I can imagine if there hadn’t been an assistant there I (and others) would have kept retrying to enter it until the machine made a sound or displayed something on the screen. Oh well, I know for next time!
Now to find my car. Hang on, other people had parked up since I’d made a mental image, and so I couldn’t see it across the carpark any more! The lift was at aisle 201 so I had to push almost the whole way across the carpark, past 25 rows of cars, over several inverted V shaped metal ramps, nearly getting stuck each time. I’d only had to pass one ramp on the way from my car to the lift so I’m still not sure whether I took the same lift back again!
All’s well that ends well, and I suppose I managed the trip on my own – and there were none of the whirly ramps that I feared. But I was almost at the point of panicking when not only could I not find the lift, but nor could the member of staff who was “helping” me. Next time, I’ll park elsewhere – and when all else fails I’ll remember there’s a concierge service on level 1.
Do I have a carer? And if so, who?
Posted by: flashsays on: 2011-09-09
- In: Disability
- 4 Comments
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…
What makes a good holiday?
Posted by: flashsays on: 2011-08-18
I’ve just come back from holiday, and I wonder what I achieved or if it was what I wanted.
Usually I mark success by having some great photos to look back on. This started on honeymoon in Iceland and I’ve come to realise I’m happier going on a short walk with a camera in my hand than spending all day in a museum – because I have nothing to show for the museum trip.
My husband and I usually opt for “staycations” but I think we’ve now covered the mainland countries and all cities of interest. There’s something more exciting about going abroad and having to contend with foreign shops rather than picking up a sarnie from Sainsburys, or having to pack a suitcase for different weather than our own (my vote’s for somewhere nice and cold). However, going abroad the costs mount up – especially if we need to hire a car for mobility – and it’s harder to find low cost accommodation if you can’t carry a tent with you. But how can I justify spending a large chunk of my beloved’s monthly income on just one week in our lives?
We went camping. I’ve come back exhausted. My body wasn’t used to a week of Doing Stuff with no rest days, even if I did have lie ins and the odd nap before dinner. Surely holidays are meant to be relaxing? I’ve always been bewildered by people who spend lots of money to fly abroad, then while away every day on a beach. Shouldn’t they be busy Doing Stuff rather than wasting time lying on their back? At last the penny drops. Perhaps I need to start factoring in the odd lazy day without feeling guilty about it.
But I’m not very good at relaxing. I find it hard to do nothing; my brain’s always on the go and if we stay at base I’ll end up infuriating my husband by sharing every thought I have or cadging for another game of cards. And on days when pain has woken me up early, it’s better to keep Doing Stuff as a distraction, even if my capacity is limited.
Well, I did have an easy day scheduled; the last day of our break was due to be spent propped up in front of a stage, but thanks to good old British weather the event was rained off and we had to make do with something more active – and less chilled.
The idea of staying in the UK probably came from the way I was brought up; I remember trips to London and York as a child – long drives to get there with my brother being sick in the car, interconnecting hotel rooms, and strangers babysitting. Days of being dragged around museums because it was “good for you”. But our holidays weren’t that bad – they taught me that I love city breaks and that my own country has plenty to offer. It also made me realise that you have to be very fond of someone before committing to spend time in a small space with them, be it car, tent or hotel room!
Anyway, I’m back: from a week in Yorkshire. I have some wonderful photos from Yorkshire Sculpture Park, some great images of York Minster and some hazy snaps from a boat trip. I picked up postcards from Eden Camp, a booklet at the National Media Museum and drove a mobility scooter around Bolton Abbey. So what if I’ve come back exhausted? I’ve been out with my husband and Done Stuff, and – which is more – we’ve spent a week away from work!
