Read the fantastic blog by Sue Marsh about the path this momentous journey took....
Saturday 17 September 2011
Diary of a Benefit Scrounger: LIB DEMS PASS MOTION AND AMENDMENT ON ESA!!
Diary of a Benefit Scrounger: LIB DEMS PASS MOTION AND AMENDMENT ON ESA!!: Wow!! With elation, relief and astonishment I can tell you that the LibDems just passed motion F6 (P17) and the Glasgow North amendment on ESA, Work Capability Assessments and the proposed one year time limit...
Saturday 7 May 2011
Reaching New Heights
Living with a long term condition, you find yourself having to push that little bit more to prove yourself... Limits are often put on your ability by other people, simply because you have a disability..
Wednesday 6 April 2011
Hurdle After Hurdle...
Regular followers of my blog may remember my post from last year - No Longer Invincible... As a recap, my Dad collapsed last February (2010). He was rushed into hospital where they diagnosed type 2 diabetes. At the time he was put onto medication but it was hoped he could control the diabetes through diet.
Wednesday 9 March 2011
Diary of a Benefit Scrounger: 2nd Reading of Welfare Reform Bill - Summary
Brilliant summary from Diary of a Benefits Scrounger:
Today was the 2nd reading of the Welfare Reform Bill and, on the whole, it seemed a very constructive, mannerly affair with both sides of the house making reasoned arguments. There seemed to be a genuine desire on both sides of the house to make sure the reforms were fair and any problems resolved.
The main points that came up time and again were those things Ian Duncan Smith couldn't confirm, the parts of reform for which details haven't been decided despite them being in the original bill. These include :
It was however, noticeable from the start that by far the biggest issue was sickness and disability benefit reform. It came up over and over again from members on both sides of the house, many waving sheaths of letters from frightened constituents.
Today was the 2nd reading of the Welfare Reform Bill and, on the whole, it seemed a very constructive, mannerly affair with both sides of the house making reasoned arguments. There seemed to be a genuine desire on both sides of the house to make sure the reforms were fair and any problems resolved.
The main points that came up time and again were those things Ian Duncan Smith couldn't confirm, the parts of reform for which details haven't been decided despite them being in the original bill. These include :
- Child Tax Credit will be abolished but Ian Duncan Smith cannot confirm what will take it's place. One study seems to imply that whilst currently up to 97% of childcare is paid for, this might drop to 70% acting as a disincentive to work.
- We also don't know what will happen about free school meals, passporting of benefits, disability premiums, housing for those on DLA or whether DLA will continue after retirement age. Council tax benefit and elements of support for carers are also unclear. Labour argued throughout the debate that there were far too many details yet to be presented to the house.
- Labour continually pointed out that without work to go to, these reforms would fail and cause hardship and inequality. Jobs MUST be the starting point for welfare reform.
- The savings cap came up over and over again. Members argued that capping savings at £16,000 for those on Universal Credit did not "foster ambition"
- Members on both sides raised concerns over the Work Capability Assessments and reassurance was given that these would be addressed.
It was however, noticeable from the start that by far the biggest issue was sickness and disability benefit reform. It came up over and over again from members on both sides of the house, many waving sheaths of letters from frightened constituents.
A HUGE congratulations to campaigners who have worked tirelessly to make sure that MPs were well informed on the issues sick and disabled people face. It showed in every part of the debate that the message had got through.
Questions were asked on DLA and it seems that the government have backed down on scrapping mobility payments for adults in care homes. Liam Byrne pushed Ian Duncan Smith for confirmation which wasn't quite given, but it was certainly a stronger concession than was given last week.
For a while it looked as though Labour might back down on time limiting ESA and certainly, many Labour MPs raised this issue as one of the greatest causes for concern. Byrne didn't quite back down, but it seemed to me that this may still be up for debate - a positive sign.
Many MPs also mentioned that DLA was in little need of reform. It was an occurring theme that announcing a 20% cut in the benefit before any assessment had taken place could only be viewed as a cost cutting measure and would understandably cause concern. I wondered if there might be a push to remove DLA from the Welfare Reform Bill altogether as too many details were still too unclear? Watch this space....
Concerns were raised over ATOS and the assessment process. Ian Duncan Smith was pushed on whether he would reconsider inflicting regular assessments on those who's disabilities were lifelong or degenerative. This was one area he stood very firm on. He saw nothing wrong with assessing ANY benefit regularly.
The Conservative side of the argument was nearly always that benefits were far too complicated and that work must pay. I disagree with neither of those statements and felt that there would be little resistance to changing specific details as long as those two points were rigorously upheld. They mentioned a desire to see real jobs that pay - another desire I can't disagree with
Finally, I'd like to point out that attendance in the house was shameful. A handful of MPs scattered the benches during this, the most important change to our welfare system for 60 years. Along with the NHS proposals, I urge EVERY MP to take his or her responsibility more seriously in our name. They ALL need to be informed on these proposals and surely every constituent has the right to think that his or her MP will give this enormous overhaul their full attention?
Sadly, right at the end when the cameras came in, Chris Grayling, the final speaker, turned the debate into a party political row. It WASN'T like that all the way through. This issue should be above politics. To their credit, most who spoke managed this admirably.
The (Lab) amendment failed by 244 Ayes, 317 Noes. Where were the other 89 MPs? Again, I don't care about excuses. This is too important to miss.
Update : John McDonnell MP (Lab) is tweeting that Ed Miliband told Labour MPs (PLP) to vote FOR the bill, and to only support the amendment. I'll leave you to draw your own conclusions on that one. I'm way too deflated.
© copyright Sue Marsh @ Diary of a Benefit Scrounger
My personal view is that I am hugely disappointed at the lack of MP's. During the whole debate (and it went for around 7hrs) there were probably no more than 15-20 MP's. It was only during the photocall that they all piled in...
This welfare reform bill is too big for it simply to be missed. Peoples lives and futures are in the hands of the Government so its not a time to take a laid back approach.
To put it into context.... The census that will be landing on your doormat over the next couple of days, failure to complete that 32 page booklet could result in a £1000 fine....
Yet a MP can skip on a vital welfare reform bill discussion... and there will be no comeback...
To me, this fails to represent our needs, but we can only action this in the next election!
Questions were asked on DLA and it seems that the government have backed down on scrapping mobility payments for adults in care homes. Liam Byrne pushed Ian Duncan Smith for confirmation which wasn't quite given, but it was certainly a stronger concession than was given last week.
For a while it looked as though Labour might back down on time limiting ESA and certainly, many Labour MPs raised this issue as one of the greatest causes for concern. Byrne didn't quite back down, but it seemed to me that this may still be up for debate - a positive sign.
Many MPs also mentioned that DLA was in little need of reform. It was an occurring theme that announcing a 20% cut in the benefit before any assessment had taken place could only be viewed as a cost cutting measure and would understandably cause concern. I wondered if there might be a push to remove DLA from the Welfare Reform Bill altogether as too many details were still too unclear? Watch this space....
Concerns were raised over ATOS and the assessment process. Ian Duncan Smith was pushed on whether he would reconsider inflicting regular assessments on those who's disabilities were lifelong or degenerative. This was one area he stood very firm on. He saw nothing wrong with assessing ANY benefit regularly.
The Conservative side of the argument was nearly always that benefits were far too complicated and that work must pay. I disagree with neither of those statements and felt that there would be little resistance to changing specific details as long as those two points were rigorously upheld. They mentioned a desire to see real jobs that pay - another desire I can't disagree with
Finally, I'd like to point out that attendance in the house was shameful. A handful of MPs scattered the benches during this, the most important change to our welfare system for 60 years. Along with the NHS proposals, I urge EVERY MP to take his or her responsibility more seriously in our name. They ALL need to be informed on these proposals and surely every constituent has the right to think that his or her MP will give this enormous overhaul their full attention?
Sadly, right at the end when the cameras came in, Chris Grayling, the final speaker, turned the debate into a party political row. It WASN'T like that all the way through. This issue should be above politics. To their credit, most who spoke managed this admirably.
The (Lab) amendment failed by 244 Ayes, 317 Noes. Where were the other 89 MPs? Again, I don't care about excuses. This is too important to miss.
Update : John McDonnell MP (Lab) is tweeting that Ed Miliband told Labour MPs (PLP) to vote FOR the bill, and to only support the amendment. I'll leave you to draw your own conclusions on that one. I'm way too deflated.
© copyright Sue Marsh @ Diary of a Benefit Scrounger
My personal view is that I am hugely disappointed at the lack of MP's. During the whole debate (and it went for around 7hrs) there were probably no more than 15-20 MP's. It was only during the photocall that they all piled in...
This welfare reform bill is too big for it simply to be missed. Peoples lives and futures are in the hands of the Government so its not a time to take a laid back approach.
To put it into context.... The census that will be landing on your doormat over the next couple of days, failure to complete that 32 page booklet could result in a £1000 fine....
Yet a MP can skip on a vital welfare reform bill discussion... and there will be no comeback...
To me, this fails to represent our needs, but we can only action this in the next election!
Tuesday 1 March 2011
New NRAS Publication - The Year of RA: One Year On
2009 was a significant year for people with rheumatoid arthritis (RA) living in the UK.
Friday 4 February 2011
Complaint to the Press Complaints Commission over Daily Mail
Today I decided to make a complaint to the Press Complaints Commission (PCC). It was in regards to a piece done by the Daily Mail on disability benefits. Its actually one of many articles and they seem to be intent on creating hate for people on benefits.
The article in question, written by James Chapman, had the headline "The great disability benefit free-for-all: Half of claimants are not asked to prove eligibility"
It went on to add that "half the 3.2million people on disability benefit have never been asked for evidence to back their claims, it emerged last night."
With huge thanks to Rhydian Fôn James and the Broken of Britain for the statistics and links; This claim by the Daily Mail is not only grossly inaccurate and misleading, but is also a distortion and misrepresentation of the truth.
There are no Disability Living Allowance claimants who have never been asked to provide evidence - filling in the long application form (40+ pages) is a prerequisite of a successful claim. Not only do you have to complete the application form, answering the most personal questions from showering/bathing, to dressing, to feeding, you need to explain how it affects you on a daily basis, including your mental health. It's hard enough having to live with a progressive illness but to then have to put it down in black and white can be pretty degrading and stressful.
There are Special Rules for claimants who need their claim processed quickly - in cases of terminal illness, for example - but these rules only apply to 1.2% of the DLA caseload or 37,800 people. [source]
The Daily Mail claims that "More than two million people on DLA have been given indefinite awards, which means they have no further contact with officials about whether they still need the benefit."
The Hansard document does show that a majority of DLA claimants are given 'Indefinite' Awards. The prevalence of this type of award reflects that a great many impairments are lifelong, progressive and cannot be cured, and that reassessment of these cases would be a waste of time and public money. However, you can still be called for an assessment at any time. The Daily Mail article distorts these facts to support their claim that disabled people have never been asked for evidence when making a claim for DLA.
The article also says that: 'The Department for Work and Pensions says the number of people on DLA has risen inexplicably from 2.5million in 2003 to nearly 3.2million.' In fact, the DWP have said nothing of the sort and that there are many possible explanations - including population growth, demographic shift, and increased awareness of the benefit.
By reporting that the increase in benefit claims is inexplicable, the Daily Mail fails to distinguish between fact and comment.
The article reports that: 'Of those [claimants], 31 per cent – almost a million – have been claiming for 14 years or more, while 46 per cent have been on the benefit for more for ten years.' Whilst this claim is accurate, and related to the statistics for indefinite awards, it is distorted in the context of the article. [source]
The Code of Practice sections that I have complained under are;
1: Accuracy;
i) The Press must take care not to publish inaccurate, misleading or distorted information, including pictures.
ii) A significant inaccuracy, misleading statement or distortion once recognised must be corrected, promptly and with due prominence, and - where appropriate - an apology published. In cases involving the Commission, prominence should be agreed with the PCC in advance.
iii) The Press, whilst free to be partisan, must distinguish clearly between comment, conjecture and fact.
12: Discrimination;
i) The press must avoid prejudicial or pejorative reference to an individual's race, colour, religion, gender, sexual orientation or to any physical or mental illness or disability.;
On a final note in my complaint, I also mentioned that given some of the reader comments it also shows that such reporting incites a climate of hate towards vulnerable groups. Hate speech has one common outcome: it creates an environment of hate and prejudice that legitimises violence against its targets.
The article in question, written by James Chapman, had the headline "The great disability benefit free-for-all: Half of claimants are not asked to prove eligibility"
It went on to add that "half the 3.2million people on disability benefit have never been asked for evidence to back their claims, it emerged last night."
With huge thanks to Rhydian Fôn James and the Broken of Britain for the statistics and links; This claim by the Daily Mail is not only grossly inaccurate and misleading, but is also a distortion and misrepresentation of the truth.
There are no Disability Living Allowance claimants who have never been asked to provide evidence - filling in the long application form (40+ pages) is a prerequisite of a successful claim. Not only do you have to complete the application form, answering the most personal questions from showering/bathing, to dressing, to feeding, you need to explain how it affects you on a daily basis, including your mental health. It's hard enough having to live with a progressive illness but to then have to put it down in black and white can be pretty degrading and stressful.
There are Special Rules for claimants who need their claim processed quickly - in cases of terminal illness, for example - but these rules only apply to 1.2% of the DLA caseload or 37,800 people. [source]
The Daily Mail claims that "More than two million people on DLA have been given indefinite awards, which means they have no further contact with officials about whether they still need the benefit."
The Hansard document does show that a majority of DLA claimants are given 'Indefinite' Awards. The prevalence of this type of award reflects that a great many impairments are lifelong, progressive and cannot be cured, and that reassessment of these cases would be a waste of time and public money. However, you can still be called for an assessment at any time. The Daily Mail article distorts these facts to support their claim that disabled people have never been asked for evidence when making a claim for DLA.
The article also says that: 'The Department for Work and Pensions says the number of people on DLA has risen inexplicably from 2.5million in 2003 to nearly 3.2million.' In fact, the DWP have said nothing of the sort and that there are many possible explanations - including population growth, demographic shift, and increased awareness of the benefit.
By reporting that the increase in benefit claims is inexplicable, the Daily Mail fails to distinguish between fact and comment.
The article reports that: 'Of those [claimants], 31 per cent – almost a million – have been claiming for 14 years or more, while 46 per cent have been on the benefit for more for ten years.' Whilst this claim is accurate, and related to the statistics for indefinite awards, it is distorted in the context of the article. [source]
The Code of Practice sections that I have complained under are;
1: Accuracy;
i) The Press must take care not to publish inaccurate, misleading or distorted information, including pictures.
ii) A significant inaccuracy, misleading statement or distortion once recognised must be corrected, promptly and with due prominence, and - where appropriate - an apology published. In cases involving the Commission, prominence should be agreed with the PCC in advance.
iii) The Press, whilst free to be partisan, must distinguish clearly between comment, conjecture and fact.
12: Discrimination;
i) The press must avoid prejudicial or pejorative reference to an individual's race, colour, religion, gender, sexual orientation or to any physical or mental illness or disability.;
On a final note in my complaint, I also mentioned that given some of the reader comments it also shows that such reporting incites a climate of hate towards vulnerable groups. Hate speech has one common outcome: it creates an environment of hate and prejudice that legitimises violence against its targets.
If you would like to see the article for yourself, you can do so here and if you have already seen the article and want to make a complaint (the more impact it will have on these types of reporting) then you can do so at the PCC
Sunday 16 January 2011
Welcome to 2011.... The Year of Fear
Traditionally, as the bells strike at midnight, we wish each other a Happy New Year. Some people merely see this as just another day but for most of us, we reflect on the past year and strive to improve on the next one. We dream of a better tomorrow...
For 2011, I had a number of dreams... to recover from recent surgery, build my physical and mental strength back up, continue with my Open University studies, working towards a degree in Health & Social Care, even work towards returning back to a career.
Those dreams have changed though and have been replaced by fear... fear of the unknown, fear that as a disabled person, I am a drain on society and its people like me that are a cost to the taxpayer.
Why do I have these fears? Because of the constant demonisation of disabled people by both Government and Press....
Firstly, the Government announce that the welfare system needs a huge overhaul, with David Cameron declaring war on 'benefit scroungers' and 'work shy'.....
The Press then jump on the bandwagon and more or less on a daily basis, stories cover how much benefit fraud costs the taxpayer, how benefits are used to fund exotic holidays and prostitutes.. Its enough to make you wish you simply didn't exist
This became the beginning of persecution of people with disabilities. Propaganda and suggesting we are putting it on, and are cheating the system.
David Cameron wrote for the News of the World, vowing to "axe 200,000 benefit cheats"
From the amount that it was 'costing taxpayers', what the press didn't seem to report was that it cost £1.1bn in DWP errors.
Suddenly, everyone on benefits is a scrounger and you find people questioning your disability, even more so if its a hidden disability.
I was born with enlarged liver and spline, rubella and jaundice. Just before my 3rd birthday it was finally diagnosed as poly articular juvenile idiopathic arthritis, a childhood form of arthritis which is systemic and over the years has affected every joint (with the exception of neck and shoulders)... it was also a very aggressive form of arthritis and had already started deforming joints.
I was admitted immediately to hospital where I had both legs plastered to prevent further deformities and started the long journey to trying to get the condition under control.
Aged 5 I started having Gold injections and having physiotherapy, which made up one of the 3 visits to hospital every week. My parents couldn't afford a car and my Mum would struggle with getting my buggy onto public transport. Mostly she would walk the 4mile round trip, pushing my buggy across major roads. They didn't even know there were benefits that they could apply for.. The information simply wasn't really given when I was diagnosed. As the first born, my parents had a huge challenge of not just becoming parents for the first time, but looking after a child with a disability.
After speaking to other parents, my parents applied for attendance allowance when I was approx 7yrs old (now known as DLA Care) but it was turned down. At this point I was having to wear shoes with a floating heel to accommodate my calipers. Due to the way I walked, the heels wore down pretty quickly and so Mum would have to get them repaired,. Often in order for her to be able to afford it, other things would have to be sacrificed. My physiotherapist then referred Mum to a medical social worker who helped her reapply for mobility and attendance allowance.. I was awarded it but only on a yearly basis (with attendance allowance at the lower rate and mobility at the middle rate)...
Every year my Mum had to complete the application forms to reapply and every year I would have a medical. The medicals were done at home because it was easier for me. During my assessment I would have to carry out tasks, show how I got up and down stairs and answer endless questions about everything, from going to the toilet to getting myself dressed.
When I was 10yrs old, and still having yearly assessments for mobility and attendance allowance, an admin error caused my benefits to be stopped... It turns out that this admin error was the distance I could walk had been marked down incorrectly... putting metres down when it should have been feet. It went to a tribunal and overall took a year to fight... I had the support of physiotherapists, occupational therapists and my rheumatologist. When it was reinstated, I was awarded the middle rate of attendance allowance and higher rate mobility. The mobility was awarded indefinitely but the attendance was still yearly
After I had left home I made the decision not to reapply for attendance allowance, one of the main reasons being that I was struggling with my disability and the acceptance of it. I was 18yrs old and wanted to feel like everyone else who went to college, got a job and it just felt that I was constantly being made to jump through hoops and prove my condition, even though it was permanent and progressive.
Mobility allowance made a huge difference to me, especially after it had been awarded indefinitely. I knew my condition would never get any better. I find it almost impossible to use public transport, especially if there are no seats at the bus stop, or on the bus. For train journeys, if a lift or escalator is out of order, I am stuck! Although I could climb stairs, its a bit like climbing the Eiffel Tower, and then you have the risk of being pushed and knocked by Joe Public (who are usually frustrated by slowness).. It would then mean I am physically and mentally drained for at least a couple of days (and in a lot more pain)
Mobility allowance being awarded indefinitely takes the worry away. I am able to put this towards a reliable car, which is also insured and taxed. Without my benefit, I would not be able to afford a reliable car, let alone insurance and tax, especially if I am unable to work.
When I was 21, my condition got a lot worse and I ended up losing my right hip through bone degeneration. The ball and socket virtually disintegrated and I ended up using a wheelchair for a year. Surgery should have been more or less straight away but due to various problems, my operation was cancelled 3 times. This was my first bad bout of depression and I spent 11 months in and out of hospital after having a breakdown. I was unable to wash, dress or feed myself. My weight had dropped to 5 stone. Up until this point I had worked as a warehouse manager for an electrical retailer. I had just got married and a year prior had bought first house.
Our mortgage company showed no mercy, and the payment protection we had been sold didn't cover my time off work because it was due to a pre-existing condition. So we still had to find the money to pay for the mortgage as well as other bills. Again a medical social worker came to our rescue and talked about DLA care component.... I talked about my previous experience with medicals and my fear of having to jump through all those hurdles again but at the same time we were struggling financially and our bank certainly wasn't interested.
With the help of the social worker, I applied. Completing the forms was so soul destroying. It truly puts the spotlight on your disability, reminding you of all the things you can't do... From someone having to help me out of bed, dressing me, helping me into the bath, onto the toilet or commode, preparing meals for me, helping me clean up when my hands drop a cup or glass... its depressing just thinking about it.
Being awarded the care component was such a relief. It was backdated which at the time helped us financially and meant I got to keep a roof over our heads.
Since then it has helped buy equipment and services to help me on a day to day basis (perching stool, bathroom aids, kitchen aids, grabbing sticks, remote control sockets etc), it means I can buy prepared vegetables or on my better days, use a right-angled knife to chop vegetables. It goes towards having food shopping delivered so I don't have to struggle at the supermarket. It means I can get help with things like chiropody, leg waxing (I have difficulty reaching legs and feet).... When I have had surgery and I'm unable to drive, it helps towards taxis or petrol for friends.
Without these benefits... well I dread to think. I would definitely lose my independence and most certainly my sanity. You can see the difference it makes, the things that it pays for and without those, my life would certainly be different.
Its hard enough living with a permanent progressive condition, but to then feel the long arm of the Government, slowly shining the spotlight into your eyes. I truly feel like an outcast of society.
I appreciate there is a deficit that needs to be resolved, and yes I keep hearing the message coming from the coalition government about how much debt we've been left by Labour but its beginning to become a stuck record. To be honest, I think this coalition government hates disabled people as much as it hates the Labour party and we've now got the Labour party sticking the boot in as well!
The Spending Challenge website set up by the coalition government showed the true feeling of some people... Some had made comments such as sterilising people on benefits and sending disabled people back to Victorian style workhouses. What message does that send out? I can truly understand why some people are feeling suicidal... There have been times when I have felt so scared about whats to come and how I will cope. On top of possibly losing benefits, I also have the hate of the media and society. It also makes me believe Glen Hoddle when he suggested disabled people were being made to pay for the sins of past.
For those who think disabled people are a drain on society, I tell you this....
The total UK disability equipment market has been estimated at £1.46 billion for 2008 compared with £1.34 billion the previous year [1] So before you start writing us off, think about what we bring to the economy.....
There are currently 1.3 million disabled people in the UK who are available for and want to work [2] The problem is there is no real support network and employers attitudes towards disability need to rapidly change. Many employers provide lip service (including government funded quangos), saying they support in order to tick the boxes but in reality put a huge amount of pressure on disabled employees when their condition deteriorates.
There are over 10 million disabled people in Britain, of whom 5 million are over state pension age [3] The government needs to remember this because if they don't start showing support to people with disabilities, they won't get their support in the polling stations...
[1] Key Note Market Report 2006, ‘Equipment for the Disabled’ (ISBN 1-84168-8975)
[2] Office for National Statistics - Labour Force Survey, Jan - March 2009
[3] Family Resources Survey (FRS) Disability prevalence estimates 2007/8
After speaking to other parents, my parents applied for attendance allowance when I was approx 7yrs old (now known as DLA Care) but it was turned down. At this point I was having to wear shoes with a floating heel to accommodate my calipers. Due to the way I walked, the heels wore down pretty quickly and so Mum would have to get them repaired,. Often in order for her to be able to afford it, other things would have to be sacrificed. My physiotherapist then referred Mum to a medical social worker who helped her reapply for mobility and attendance allowance.. I was awarded it but only on a yearly basis (with attendance allowance at the lower rate and mobility at the middle rate)...
Every year my Mum had to complete the application forms to reapply and every year I would have a medical. The medicals were done at home because it was easier for me. During my assessment I would have to carry out tasks, show how I got up and down stairs and answer endless questions about everything, from going to the toilet to getting myself dressed.
When I was 10yrs old, and still having yearly assessments for mobility and attendance allowance, an admin error caused my benefits to be stopped... It turns out that this admin error was the distance I could walk had been marked down incorrectly... putting metres down when it should have been feet. It went to a tribunal and overall took a year to fight... I had the support of physiotherapists, occupational therapists and my rheumatologist. When it was reinstated, I was awarded the middle rate of attendance allowance and higher rate mobility. The mobility was awarded indefinitely but the attendance was still yearly
After I had left home I made the decision not to reapply for attendance allowance, one of the main reasons being that I was struggling with my disability and the acceptance of it. I was 18yrs old and wanted to feel like everyone else who went to college, got a job and it just felt that I was constantly being made to jump through hoops and prove my condition, even though it was permanent and progressive.
Mobility allowance made a huge difference to me, especially after it had been awarded indefinitely. I knew my condition would never get any better. I find it almost impossible to use public transport, especially if there are no seats at the bus stop, or on the bus. For train journeys, if a lift or escalator is out of order, I am stuck! Although I could climb stairs, its a bit like climbing the Eiffel Tower, and then you have the risk of being pushed and knocked by Joe Public (who are usually frustrated by slowness).. It would then mean I am physically and mentally drained for at least a couple of days (and in a lot more pain)
Mobility allowance being awarded indefinitely takes the worry away. I am able to put this towards a reliable car, which is also insured and taxed. Without my benefit, I would not be able to afford a reliable car, let alone insurance and tax, especially if I am unable to work.
When I was 21, my condition got a lot worse and I ended up losing my right hip through bone degeneration. The ball and socket virtually disintegrated and I ended up using a wheelchair for a year. Surgery should have been more or less straight away but due to various problems, my operation was cancelled 3 times. This was my first bad bout of depression and I spent 11 months in and out of hospital after having a breakdown. I was unable to wash, dress or feed myself. My weight had dropped to 5 stone. Up until this point I had worked as a warehouse manager for an electrical retailer. I had just got married and a year prior had bought first house.
Our mortgage company showed no mercy, and the payment protection we had been sold didn't cover my time off work because it was due to a pre-existing condition. So we still had to find the money to pay for the mortgage as well as other bills. Again a medical social worker came to our rescue and talked about DLA care component.... I talked about my previous experience with medicals and my fear of having to jump through all those hurdles again but at the same time we were struggling financially and our bank certainly wasn't interested.
With the help of the social worker, I applied. Completing the forms was so soul destroying. It truly puts the spotlight on your disability, reminding you of all the things you can't do... From someone having to help me out of bed, dressing me, helping me into the bath, onto the toilet or commode, preparing meals for me, helping me clean up when my hands drop a cup or glass... its depressing just thinking about it.
Being awarded the care component was such a relief. It was backdated which at the time helped us financially and meant I got to keep a roof over our heads.
Since then it has helped buy equipment and services to help me on a day to day basis (perching stool, bathroom aids, kitchen aids, grabbing sticks, remote control sockets etc), it means I can buy prepared vegetables or on my better days, use a right-angled knife to chop vegetables. It goes towards having food shopping delivered so I don't have to struggle at the supermarket. It means I can get help with things like chiropody, leg waxing (I have difficulty reaching legs and feet).... When I have had surgery and I'm unable to drive, it helps towards taxis or petrol for friends.
Without these benefits... well I dread to think. I would definitely lose my independence and most certainly my sanity. You can see the difference it makes, the things that it pays for and without those, my life would certainly be different.
Its hard enough living with a permanent progressive condition, but to then feel the long arm of the Government, slowly shining the spotlight into your eyes. I truly feel like an outcast of society.
I appreciate there is a deficit that needs to be resolved, and yes I keep hearing the message coming from the coalition government about how much debt we've been left by Labour but its beginning to become a stuck record. To be honest, I think this coalition government hates disabled people as much as it hates the Labour party and we've now got the Labour party sticking the boot in as well!
The Spending Challenge website set up by the coalition government showed the true feeling of some people... Some had made comments such as sterilising people on benefits and sending disabled people back to Victorian style workhouses. What message does that send out? I can truly understand why some people are feeling suicidal... There have been times when I have felt so scared about whats to come and how I will cope. On top of possibly losing benefits, I also have the hate of the media and society. It also makes me believe Glen Hoddle when he suggested disabled people were being made to pay for the sins of past.
For those who think disabled people are a drain on society, I tell you this....
The total UK disability equipment market has been estimated at £1.46 billion for 2008 compared with £1.34 billion the previous year [1] So before you start writing us off, think about what we bring to the economy.....
There are currently 1.3 million disabled people in the UK who are available for and want to work [2] The problem is there is no real support network and employers attitudes towards disability need to rapidly change. Many employers provide lip service (including government funded quangos), saying they support in order to tick the boxes but in reality put a huge amount of pressure on disabled employees when their condition deteriorates.
There are over 10 million disabled people in Britain, of whom 5 million are over state pension age [3] The government needs to remember this because if they don't start showing support to people with disabilities, they won't get their support in the polling stations...
[1] Key Note Market Report 2006, ‘Equipment for the Disabled’ (ISBN 1-84168-8975)
[2] Office for National Statistics - Labour Force Survey, Jan - March 2009
[3] Family Resources Survey (FRS) Disability prevalence estimates 2007/8
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