Saturday 8 October 2011

Free cinema entry for carers: the CEA card


We have had a CEA cinema card for at least 6 years. My wife gets high rate DLA and it gives me free entry as an accompanying carer at the cinema. We have a son who has severe epilepsy and dravet syndrome so I decided to get a card for him so that his carers can take him too.
When I visited the CEA Card site, I found that the scheme had changed since I last applied to a one year renewal rather than three years.
CEA cards can be obtained by people receiving DLA and allow an accompanying carer free admission
This trebles the cost for anyone with a long term illness, and there is the extra hassle of reapplying. Also if you are anything like us, turning up at the cinema with an expired card and having to pay extra. All very annoying.
The scheme is passported by having DLA. My son has a ten year award and my wife has an ‘indefinite’ award, so I emailed the CEA Card Company to ask if I could get a card for a longer period.
I received this prompt reply:
“The Cinema Exhibitors’ Association (CEA) is the trade body for UK cinemas and launched this non-mandatory scheme as one way in which a cinema can meet its obligations under the 2010 Equality Act. It recognises that some people because of their disability may need someone to help them access a cinema and provides that person with a free ticket to accompany them….. Initially the scheme provided a card with a validity period of 3 years from the date of issue. This meant that a person claiming Disability Living Allowance for a matter of weeks could still benefit from the card for the entire three year period. Reducing the lifetime of the card to 1 year from the date of issue addresses this problem…. Unfortunately we cannot provide ten year cards, all CEA Cards are valid for one year from date of issue.
Carrie Walters CEA Card Co-ordinator”
“awarded DLA for a matter of weeks”
I was surprised to find that they changed the rules in March 2009 citing unfairness of someone getting hold of a 3 year card if they had only been awarded DLA for ‘a matter of weeks’. Something I find incredibly unlikely. DLA has a long qualifying period and usually takes months to get. The only occasions I can think of where you might get it quickly and only have it for a few months is under the ‘special rules’. Under those circumstances it is fast tracked, the ‘special rules’ are for where you have a terminal illness and you are not expected to live more than six months.
I decided to try and get hold of the some stats about DLA claim length. So far I have only found them for Incapacity Benefit. IB_SDA_ESA_medical_duration_feb_2011_tables
These tables show that for Incapacity Benefit, less than 10 % of people are claiming it for under 3yrs. Obviously I need to find the figures for DLA. If they are similar it shows that thenew scheme is unfair as 90% of people are now paying three times the price they were.
CEA Card changes
I emailed the CEA Association itself via thier website and had another very quick response.
I got this reply from CEO of the Cinema Exhibitors Association
Phil Clapp wrote:
The change, which was introduced in March 2009, recognised the fact that there is now an increasingly high ‘turnover’ of people on Disability Living Allowance such that a significant number are now in receipt of DLA for a good deal less than a year. …. The CEA did consider a number of other approaches, and consulted a range of representative groups before making this decision. … we have received a small number of complaints from people who are themselves in receipt of long-term or indefinite DLA….. the truth is that were we to move away from the current standard annual approach to all applicants, then the costs around administering a more complicated scheme would inevitably rise and this would need to be passed on to those using the Card.
Phil Clapp | Chief Executive Cinema Exhibitors’ Association
I was very surprised to see that there is “increasingly high ‘turnover’ of people on Disability Living Allowance such that a significant number are now in receipt of DLA for a good deal less than a year” if anyone knows where I can check this please let me know. I am also interested in the range of represented groups that they consulted with, and why more of an objection wasn’t made at the time.
I replied sending Phil the stats I had found about Incapacity Benefit claim length and asking for if there are any plans to review the scheme. I think that even if they charged people twice as much to get a lifetime or three year award it would still be cheaper and fairer for everyone. They could reserve the one year cards for people with one year of DLA.
I am worried that the changes in the scheme are more about the “Disabled people are scroungers/fraudsters” mindset. They have made the scheme harder to qualify for on the presumption that otherwise people will abuse the system. I wondered if there was any evidence of this. We know the fraud rates for DLA are actually very low.  The DWP Information Directorate report on ‘Fraud and error in the benefits system’  for 2008-2009 estimated the level of fraud in relation to DLA at just 0.6%.
Was the change is in response to the perception of disabled people by the cinema owners? I contacted Phil Clap again with my concerns.
CEA Card – Do you even need one?

Phil Clapp responded very quickly saying that
the basic point at the time was that many of the cinemas companies would only support the CEA Card going forward if we made this change.”
Most most importantly the revelation that:
“perhaps most important being that we have always made it clear that while the Card is intended to make it easier for disabled people to avail themselves of a free ticket for someone to accompany them it is not a requirement that a person has a Card before a cinema will make such provision, or any other similar adjustment. The Card scheme was just introduced to make the process more straightforward.”
So actually we shouldn’t need a card at all. But that is not our experience. I know we have been refused a free entry before when the card had expired. Our son’s carers have never been offered free entry even though he is in a buggy at 7 and does not communicate. I understand that people with a hidden disability might prefer a having a card than explaining to a kiosk attendent.
I shall be contacting our local cinema to find out if they will allow us entry without a card. I would be interested in anyone else’s experiences and comments.
I would also urge you to email the CEA directly using the contact form here http://www.cinemauk.org.uk/contact/ with your experiences or you are unhappy about the switch to annual renewal for the CEA card.

Thanks to Duncan from Trabasack for this great post 

Friday 7 October 2011

But You Don't Look Ill...

 Guest blog by ManicSleepTeacher
I’m livid! Abso-bloody-lutely steaming! Probably not in the right frame of mind to blog but I have to get rid of this anger.
This morning, I built up the confidence to go to an exercise/dance class. I had been encouraged to do this by my CPN to build my confidence, my psychologist to develop relationships outside of work and my psychiatrist as the anti-psychotic is causing me to gain weight at a rapidly alarming event. So last night, I booked a taxi to get me there as I can’t yet do buses.
This morning, the taxi arrived. I was initially pleased as it was a driver I’d seen before a few times on trips to work. I got in the car and we passed pleasantries. He asked me if I was off to work and I explained I was off to the leisure centre for a class. The conversation went like this:
Him: “On holiday?”
Me: “No, I’m currently off sick”
Him: “And you want me to take you to the Leisure Centre?”
Me: “Yes please”
Him: *Long pause*
Him: “You’re not too sick to go to the Leisure Centre then?”
Him: *Uncomfortable laugh*
Now I do remember the days when, if I’d had a day off school, I wasn’t allowed to go out to play afterwards (if you’re not well enough to go to school ….) but this sort of attitude is just indicative of the demonisation of people with disabilities or long term health problems that @BendyGirl and @Suey2y highlighted in the ‘Ask Ed Milliband’ session at the recent Labour Party Conference, the image that the Daily Fail perpetuates throughout it’s pages and that middle England appears to wholeheartedly believe.
I honestly felt like Jeremy Kyle was going to pop up and accuse me of spending his tax payers money on exercise classes before I reminded myself that I am fortunate enough to be able to work and pay taxes too.
The confidence building exercise was an abject failure. I did complete the class but feel shame not endorphins running through my veins.

Thursday 6 October 2011

Am I Benefit Scrounging Scum? Part 2 There Are No Rainbows

 By Eclectic_Jax First posted here
 
I'm sat on the big brown sofa with a cup of tea in the cat & fish cup.  The sun is streaming through the window, casting rainbows all over the walls as it passes through the crystals hanging from the curtain pole.  The dog is sunbathing/sleeping in her bed and the only audible sounds are the gulls and the roar of the ferry as it passes by. 

That's a lie actually.  That was the state of play when I started writing this post first thing this morning.  It's now dark outside, the cream curtains are drawn and there are no rainbows on the walls anymore.  The only sound apart from my fingers on the keyboard is the occasional sniff as the tears take over my normally strong self.  I've had a few hours where I've had a word with myself, but then a blog post by a friend set me off again.  The floodgates have been well and truly opened by a text message, from someone I care a lot for, being "nice" to me.  These were the catalyst for this outpouring of salty nastiness.  

The original reason for this "wibble" was a letter I received this morning telling me that because I have somewhat adapted to my situation and can walk with the aid of morphine, the brace & crutches, I'm not entitled to any extra benefits.  The phrase used was "using suitable aids, although your walking is limited, you are not unable or virtually unable to walk".  Then came the rest of the reasons:

"because, at your own speed, you can safely manage your toilet needs, use a bath OR shower, get up and down stairs.........using suitable aids and don't need help from someone for about an hour a day....you are not at risk of falling and can take reasonable precautions to prevent any dangers...substantial danger, to you or to others.....you are not entitled to any rate of care"

Now, I have a raised toilet seat because otherwise, my kneecap tends to pop out of place or the knee will lock.  To have a shower, I have a seat to sit on.  This replaced me going into the shower with the crutches!  Getting up and down stairs is generally done on my arse as, as previously stated, I've already fallen down the stairs and damaged my shoulder once and I don't want to risk harming myself any further.  I don't have any help during the day because I'm too proud, not because I don't need it.  As for the falling - I think the chunks of flesh that are missing from my head and the shoulder injury will put pay to that statement.  What is "substantial damage" anyway?  If not at risk of falls, I would not have been assessed and granted a system that recognises if I have fallen and calls either a nominated person or a local warden if I speak to them on the phone but can't get up unaided or, if I don't respond at all in a certain time frame, 999.  

Now I can appeal this decision apparently - as long as none of the changes that have happened, happened after I got the letter today.  If that had been the case, I'd have to go through the whole process again from scratch!  It's taken from 14th June for them to get to this point!  Thankfully, they have based their decision on information dated 13/09/2011.  Since then, I have had my test results back and as covered in a previous blog post, I've signed a consent form for more surgery in the next week or 2 and a further major surgery after that.  I'm hoping that this will make them see that I do need help.  I've done myself no favours really by adapting and being proud.  The problem now is that I can see my strength and determination waning.  I've cried for hours today and that isn't like me.  I'm a strong and positive person, but the prospect of losing my leg is pushing me to the limit.  Not because I think it will be the end of the world, because it won't be, but more because I'm scared of having to cope on my own.  If I'm struggling now, what the hell am I going to do when I come out of hospital to a 2nd floor flat, 28 stairs and doors that cannot accommodate a wheelchair?

I've paid into the system for over 20 years, I'm not asking for anything I don't need.  All I'm asking for is a little bit of help until I get back to my job and for someone to bring the rainbows back...

Am I Benefit Scrounging Scum? Part 1

 By Eclectic_Jax First posted here
 
I'm sat on the big brown leather sofa, my pint cup of tea to my left and the dog asleep in her bed to my right.  The window is open and the air is heavy with birdsong - it's a truly beautiful sound.  There is a strange tap tap tapping noise, which by straining, I can see is being caused by a blackbird trying to smash a snail shell on the bay window roof below.  There is a faint sound of a passenger plane overhead and the cries of gulls drifting in from the sea.  It's not dark, but not quite light.  It's that sort of inbetween haze.  And that pretty much sums it up.

When I first had my accident, I didn't bother claiming any benefits as I had a very well paid job but after a couple of weeks, I was told that it was best I stayed off for Health & Safety reasons.  There was 2 flights of stairs up to my desk, 1 to the nearest toilet and 3 down if I wanted a drink, my lunch or a smoke (I don't smoke anymore thankfully).  I was immobilised from ankle to hip and on crutches, so was deemed a bit of a liability.  Unfortunately, there was no sick pay as it was only a small Firm so I had to go through the rigmarole of applying for Sick Pay.  Little did I know that 6 weeks later, I'd be made redundant.  Thankfully, I got my normal wage as final payment.  It was a bitter blow, but I was not the only one.  Approximately 200 were made redundant that week.  I spent my redundancy wisely and paid off debts that had built up due to being on a greatly reduced income, filled the freezer and cupboards and made sure that the bills were all up to date.  It didn't leave much, but  I had a holiday booked and thought sod it, I'm still going to enjoy it.  And I did! 

Applying for benefits was a killer.  I'm a proud bird, some would say stubborn (they're right but don't tell them I said so) and to ask for help does not come easy.  Since then, my circumstances have got worse, and I find myself in rather unpleasant territory.  I've admitted that I need help and that I can't cope with the way things are.  Little did I realise just how hard it would be!  Now for those that think life on benefits is easy and you get everything paid for, you're wrong.  Out of my benefit, I still have to pay £25 towards my rent, £8 towards my Council Tax and the usual bills, as well as find the money to get to physio and hospital appointments.  It doesn't sound like a lot, but when your income is only a small amount it's a bloody big dent!  I still don't understand how those who have never worked and are on benefits manage to go out and get drunk & smoke or do drugs (Yes I know not all do before someone picks up on it).  I guess some just know how to screw the system.

It has taken the best part of 16 months to get decent analgesia so that I can be relatively pain free and 6 weeks to get an Occupational Therapy Assessment so that I can finally have a shower safely (I'll come back to this in a moment), sit on the toilet without my kneecap popping out and wash a dish or 2 without worrying about falling over.  I've applied for DLA (Disability Living Allowance), and more recently been made to apply for ESA (I can't remember what it stands for, but it's essentially the same form as for the DLA - this is a blog post on its own so I'll come back to this at a later date, suffice to say, Google is your friend).  I'm still waiting for a decision on DLA.  They have to get a report from my Surgeon and GP, which I don't mind as I have nothing to hide.  

Now, as already stated, things have got worse and so I found myself requiring more help.  Having been told that it was a long wait for an OT Assessment, I was advised to "use baby wipes" to wash myself as it was unsafe to use the shower (I was taking the crutches in with me for stability which wasn't the best of ideas) or stand to have a strip wash, and had I got into the bath I'd have either needed Trumpton or Prince William and his colleagues from RAF Valley to winch me out.  Housework had become all but impossible - the simple act of hoovering generally results in me falling over as I can't hold the hoover and the crutches, so something has to give...it's usually my knee.  Doing the dishes and cooking a meal is the same.  Because of this, I asked for a "Home Help" (not sure what it's called these days, I'm sure it's some daft acronym).  The problem is, because I have used my nouse and adapted to a small extent, I appear to have shot myself in the foot.  

When I make a meal, I put it in a tupperware dish and poke it into the living room with the crutches as this saves me from either dropping the plate/bowl and burning myself or ending up face first in it.  The same with a cup of tea or coffee - I put it in a flask and roll it into the living room.  To collect my post, put the bin bag out, let the dog out, go to the hospital etc, I go down the 28 stairs on my arrse (I've already fell down them and ended up rugby tackling the wall, resulting in a damaged shoulder.  Martin Johnson would have been impressed had I been in a scrum though).  I have a wheelchair for when things are extremely bad, but it's outside my front door - 2 flights of stairs up!  Thankfully, they are aware of the need for more surgery, and know that my needs will increase in the next few weeks, but I will still have to wait a few days for everything to be put into place.  I wait with bated breath for their decision.

I intend for this to be a temporary blip in my life.  No matter what the outcome surgically, I intend to be back at work as soon as possible, paying all the money back in that I've taken out so far.  I'd like to think that I'll get the help I need, but I won't hold my breath.  Maybe in the meantime I should develop a drink or drug problem (well I'm already on morphine so surely it's just a step up...scrap that, I have more self respect), I'd get much more money and help then!  I'll just have to continue to adapt and overcome. 

I guess what I'm trying to say is, don't tar all that are on benefits with the same brush.  Some of us have worked a day in our lives (over 20 years in my case) and will continue to do so, with or without the help that is supposed to be in place for such circumstances.

Wednesday 5 October 2011

Baroness Jane Campbell Wants Our Views On PIP

Here is a copy of a mesage we just received from Baroness Campbell. I'm too tired to tweak and make this shiny, so if you can just leave your opinions in the comments thread, it would be much appreciated :

"As you will see from yesterday we talked about the importance of language. So I'm thinking of challenging the title PIP. I think it should remain Disability Living Allowance, after all that's what it's about, disabled People's extra cost of living. It shouldn't not based on independence (defined by professionals) conditionality. 


The condition that one should become "personally independent", which is likely to be defined in a medical model way, will not result in the independence disabled People have demanded over the years (i.e. independent living is about having choice and control over your life like that of non disabled people. 


It includes all things in your life like work, education, raising your family, leisure, personal mobility etc) If the government want to continue encouraging us take responsibility over our lives, then they must give us the right to make our own decisions as to how DLA money should be spent.


 It must not be measured by able-bodied people's assumptions as to what it is to be independent. Could you ask your networks what they think. I believe disabled people want to keep disability living allowance as a universal allowance. 


We want to continue the principle that once you become eligible it is left up to you (personal responsibility) as to how you spend it to minimising the extra costs of being a disabled person, therefore we shouldn't be constantly reassessed as to how our so called independence is going. I'm thinking of demanding we keep the language that means disability living. And as we know, living must be defined by the person whose life it is. (Disabled people are the experts in their own situation)


I could put this down as an amendment, but I need support from the outside world, to make it important and powerful.


Comments please ASAP please"

Bns Jane Campbell wants our views on PIP


Here is a copy of a mesage we just received from Baroness Campbell. I'm too tired to tweak and make this shiny, so if you can just leave your opinions in the comments thread, it would be much appreciated :

"As you will see from yesterday we talked about the importance of language. So I'm thinking of challenging the title PIP. I think it should remain Disability Living Allowance, after all that's what it's about, disabled People's extra cost of living. It shouldn't not based on independence (defined by professionals) conditionality. 


The condition that one should become "personally independent", which is likely to be defined in a medical model way, will not result in the independence disabled People have demanded over the years (i.e. independent living is about having choice and control over your life like that of non disabled people. 


It includes all things in your life like work, education, raising your family, leisure, personal mobility etc) If the government want to continue encouraging us take responsibility over our lives, then they must give us the right to make our own decisions as to how DLA money should be spent.


 It must not be measured by able-bodied people's assumptions as to what it is to be independent. Could you ask your networks what they think. I believe disabled people want to keep disability living allowance as a universal allowance. 


We want to continue the principle that once you become eligible it is left up to you (personal responsibility) as to how you spend it to minimising the extra costs of being a disabled person, therefore we shouldn't be constantly reassessed as to how our so called independence is going. I'm thinking of demanding we keep the language that means disability living. And as we know, living must be defined by the person whose life it is. (Disabled people are the experts in their own situation)


I could put this down as an amendment, but I need support from the outside world, to make it important and powerful.

'Benefit Thief' By Blood In The Sand. 1st Posted Oct 5th 2010

Originally posted here by Blood In The Sand

It was Wednesday, free money day, a reason to get out of bed. So I did. I then wandered down to the post office and stood in line with old dears posting mittens to grandsons, businessmen posting invoices and mums paying the gas and electric.

There were tuts and frowns of course, I mean I was 23 years old. Should have been out grafting, earning some wedge. A smartly dressed middle aged woman even said as much. 'Young man, hang your head in shame. I've never claimed benefits once.'

I looked at her and thought of my mum. I then grabbed my free money and bought 20 cigarettes with it. This didn't go down well with Mrs Average. 'Well how pleased am I my taxes pay for your cigarettes. I suppose you'll be off to the pub to waste the rest?' Her voice was raised and it brought disapproving looks and more tut-tutting from others.

I closed my eyes. Screaming, terror. My friend holding a severed head in his hand, 'Do I bury this mate or just bin it?' I looked at the attractive lady and smiled at her. 'Fuck off, you civvy cunt before I gouge your painted fucking eyes out.'

The man behind the counter took offense and joined the fray. 'Steady on son, there's no need for that.' I spun round to look at him and he saw for a brief moment the hate and pain inside my head. He went back to shuffling the papers and I went to the pub.

I should have been out looking for a job, instead of pouring whisky and beer down my throat. I felt bad about my unkind words, then I remembered faces shattered by metal and ordered more whisky.

That night I sat on a stool, pissed out of my head with a rope around my neck trying to find the balls to save the taxpayers some cash. But I wasn't brave enough. So I cried about the war for a bit, felt sorry for myself and I hung my head in shame...

Lord Fraud - A Freud-ian Slip

We hereby give notice that the Lord previously known as "Freud" will henceforth be known as "Fraud"

yosli.jpg

A million thanks to @DocHackenbush for this awesome image 

Tuesday 4 October 2011

1st Committee Session Of Welfare Reform Bill Today - Ppl Needed To Attend URGENT!

Are you based in or around London and interested in the impacts of the Welfare Reform Bill on all our lives? If so please try to attend the first committee session today in the Houses of Parliament. It is open to the public so just turn up, go through the security checks and make your way to Committee Room 4A. The room is larger than normal, chosen to allow access and there is also an overspill room with live feed link should it be needed.

We understand that this is short notice and a big ask, but the more people who can attend, even if only for a short period of time, the better. We need to show the government that they cannot quietly slip this destructive bill through without disabled people, sick people and carers speaking out about what they are doing to us.