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Baroness Jane Campbell Wants Our Views On PIP

October 5, 2011

Cross posted with pleasure from Diary Of A Benefit Scrounger and The Broken Of Britain.

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.

19 Comments leave one →
  1. October 5, 2011 2:57 pm

    I agree , PIP seems to assume that all disabled including the severely so can have independence this is not always so. DLA is more descriptive of what this allowance should be about, giving people a little extra to help with the added costs of being disabled. Those costs being, transport, rehab costs, heating, and specialised equipment.

  2. Penny Thornton permalink
    October 5, 2011 3:46 pm

    Yes, very important to keep DLA as it is. This means people with various conditions are helped to live their lives with that support that can make all the difference. Many have conditions that will never improve and that needs to be understood. Removing DLA would be a very cruel & unnecessary step. PIP is not the answer.

  3. John Hargrave permalink
    October 5, 2011 3:46 pm

    I believe someone in government once described DLA as an ‘out of work’ benefit,, so it would appear they have little, or no, knowledge of the subject. We all know it is to help pay for the extra costs associated with disability. Therefore it is better it is called the ‘Disability Living Allowance’ as this adequately expresses what the money is for.
    To even suggest another name, as an excuse to get one fifth of us off this benefit is vulgar in the extreme and it will hit those people who rely on these payments to help stay in work, to help to keep mobile and to pay for transport, etc to name but a few of the reasons why this cash is needed. Its impact on disabled people is immeasurable and it is sickening that cash for other projects here, and abroad, can be conjured up in an instant to the detriment of ourselves.

  4. October 5, 2011 5:26 pm

    DLA allows me to work and keep economically active. I have paid taxes and NI for 35 years so I resent being told by a government that condones greed that Im a scrounger. I claim no other benefits but I could if I wanted to. Being self employed and working at my own pace with MS is the only way I can remain financially independent and use my skills and expertise. What employer would take on someone who doesnt know from day to day how they’re going to be; active, semi active or bedridden? The fatigue is horrendous and reasonable working adjustments will not be beneficial to small businesses. DLA is not an “out of work” benefit, it is a benefit to cover the costs of being disabled like additional heating laundry cleaning ready meals. I was awarded DLA indefinately, MS is not curable and it is progressive. Are ATOS miracle workers as well as stooges for this government? Also nobody seems to be making the distiction beteen sick and disabled. If you are sick or ill you can’t be employed in normal jobs and if you’re disabled you may be physically well but you have to overcome barriers in the workpace

    • *Stargazer permalink
      October 5, 2011 9:44 pm

      Hi Anjelica I know what you mean about resenting people’s view that we don’t or have never contributed to the coffers – it makes me so mad I could spit – who are perfect strangers to pre-judge us? Did it hurt like hell for them to get out of their community bed this morning I wonder? Do they have the freedom of a blue badge but the limitations of a scheme that’s being abused? Did they have to park 1/4 mile away from work today and limp/ wheel themselves in? We get help but it’s not always facilitated for us by us.
      What a wonderful world THAT would be!!!!!!

      I agree with everything we’ve all said – we can only hope our voices are heard!

      I am long-term sick AND disabled, terrified I won’t get a three year or indefinite award next year. I was diagnosed with degenerative spine but they still only gave me a two year award.
      I’ve since been diagnosed with an inherited syndrome.
      I suffer the misery of pain, nausea, fatigue, immobility, emotional/ mental incapacitations and depression. My ATOS appointment is the fifteenth of this month. I feel positively sick about it.
      I suffer having to use buses taxis and trains to get about.
      I’m desperately trying to get out of this first floor flat so I can finally use a powered-chair.
      I could not function now without DLA, I pray that they will leave things as they are.

      Blessings to you.

  5. mary anderson permalink
    October 5, 2011 6:01 pm

    I totally agree that dla should remain the same, i myself was awarded it indefinitly , as i have epilepsy with no warning, along with other physical , disabilitys, my problem’ s will only get worse with age and will not get any better, i don’t know what i would do without this benifit, there is nothing worse than feeling that other poeple are looking down on us and calling us scroungers, i dont think these closed minded people know what its like to suffer pain on a daily basis, not to mention the extra worry that the goverment are going to try and take this benifit away from you, they say they are there to help us, (they must be joking) if that was the case then why bring in atos as we know that they are there to claw back as much money as they can without a thought for all of us who depent on this little bit extra to make life a little more( like a normal life.)

  6. *Stargazer permalink
    October 5, 2011 9:31 pm

    Hear Hear, couldn’t agree more, count this as an affirmation of my view.
    Leave alone what works well enough for us, thanks, exactly as it is – we as the people who need it should be the only voices heard. IF IT AIN’T BROKE, DON’T FIX IT.

    It took me over four years of pain, misery and incompetent doctors, to finally leave them for my new ones last year and be diagnosed last week with an inherited degenerative condition. My fight to get DLA won only one year ago. I struggled for years as a disabled person on Incapacity Benefit. I ate less food to pay for electric in winter, went without clean clothes and leisure time to get taxis to the doctors and hospital appointments.
    Five pound notes to family at Christmas, embittered and so bah-humbugged I can’t tell you.
    I worked hard for my living once-upon-a-long-ago, three holidays a year, you get the picture.

    I dream of a day when I will be well enough, within my illnesses, to re-train AND pay tax again, so I can have nice things and spoil my family and have a family myself and at least one holiday a year. I’ve not been abroad since 1999! Without the right help from the establishment, what hope do I have of doing any of this??

    Please Baroness – leave DLA as it is. Can you facilitate the provision of more suitable housing for the disabled too? Please help young carers more. From age 10 I was a carer for Mum. 26 years later my 26 year old Brother is now Mum’s full-time carer.
    And guess what? He may have our syndrome too.
    Please also help to stop respite centres closing down?
    There’s so much more I could ask, but me fingers are sore and I need to eat and take tablets!

    Thank you for this post SameDifference1.

  7. Fiona permalink
    October 6, 2011 3:54 am

    DLA disability living allowance , good name straight forward and means what it says its a allowance for disability living ! Disablied people have lots more expences than healthy ” able people” and they are not I Want stuff expences or stuff that people with money buy, its practical day to day living aids our expences are stuff like extra warmth due to conditions where getting cold could KILL the person, or expences that make life just that bit Easyer for arthritic hands and through the brain fog from pain and exhaustion and sleeplessness our conditions can cause us! We would rather not have to buy or need these ugly in some case wheelchairs, crutches, loo seats, the list goes on these are not fun expenses  their the nitty gritty of what it comes down to weather we have a ok day or a day so bad we are hospitalised and that is said with no dramatics, some of us do just die from lack of money for the basics which even a healthy able person would die from but would take them long due to starting from good health but when your body is allready fight pain, tiredness, in some cases cancers, immune problem LACK OF proper healthy FOOD combined with lack of warmth will kill anyone but when your allready struggling with ill health it just kills you quicker, so yes I think DLA is very well named they got it right the first time, why change it I say! Plus anyone that’s even had to fill out DLA forms or book and go through all the hoops knows why the fraud is so low for DLA compared to the rest of benefit. Who in their right mind would put them selfs through all that ! Unless they really really needed every extra bit of help with their disability living expenses, HEY how about DLE? 

  8. October 6, 2011 10:05 am

    Disability Living Allowance should remain, with the same name and total funding allocated, if not more. PIP is partly being introduced to reduce the cost by 20%, meaning that many people will lose out altogether or will lose significant ability to make choices. As the rate of fraud is so very low on this benefit, those will all be people with very genuine needs no longer being met.

    Every disabled person is completely unique. Their impairment(s) will be different, the way those impairments manifest themselves, the way the person manages those effects, their interests, personalities and aspirations – all of those will be different. The only way DLA can be administered is on an individual basis.

    Yes, for many, gaining as much independence as possible is the goal. I hate not being able to drive or use public transport, meaning without a driver I am completely housebound. Having the occasional use of a driver doesn’t make me independent (I’m dependent on the driver!) but does mean I can make some limited choices about where and when to go out. Those choices should be mine (like they would be for non-disabled people) – not decided for me by someone who knows nothing about my life.

    Disabled people shouldn’t have to prove or justify the things that DLA can provide, and for those of us with permanent conditions certainly shouldn’t have to regularly prove the same problems over and over again.

    Compared to much government expenditure, DLA is relatively small, but it makes a huge difference to the recipients. For many, like me, it enables us to carry on working, therefore saving the country on other benefits. For others it enables them to continue to live independently, saving the country a fortune on residential care fees. And for all it enables small changes that make a big differeence in the quality of life of disabled people, enabling us to do a fraction of the things that non-disabled people take for granted.

    Disabled people seem to be being disproprtionately targetted for the spending cuts. Please leave this one relatively small benefit alone – there is almost no fraud, and the recipients rely on DLA for fundamental expenses, not luxuries.

  9. Carolyn permalink
    October 6, 2011 12:57 pm

    When DLA was first introduced, its purpose was to meet the additional costs that disabled people have. I believe that I do have extra costs to meet through having a long term condition. I have to use my car to travel anywhere, as my mobility is poor, although I do not meet the criteria for the mobility part of DLA. I am not able to work full time as my RA causes fatigue and I could not manage to work full time and look after my children. I therefore work 3 days per week which I can manage. I also have substantial damage to my hands which means that my husband gives me a lot of help at home. The DLA that I receive and tax credits really help us as a family, and I fear that many people in the same situation as me will be far worse off as a result of these cuts.

    I believe that DLA should be retained in its present form, although I agree that the application form is far too long. I believe that assessments should be carried out using evidence from medical professionals and social workers who work directly with the claimant and who can give a proper assessment on how the person is affected by their disability. Further, I cannot understand why the qualifying period is to be extended from 3 months to 6 months, and see this only as a further cut in benefit.

    I am also appalled at the plans to cut the mobility component for people who live in residential care. Having their own mobility allowance means that they can use this to go out with friends and family and have a small amount of independence rather than having to rely of the staff of the care home who are often overstretched and do not have the time to take people out regularly.

  10. October 6, 2011 3:42 pm

    I believe that DLA should be left, having read all the comments I agree with all i have read i dont feel literat enough to say what i feel about PPI and what it means so i hope you dont mind if i jump on all your bad wagons, I do no that if my money changes i dont know what il do,iv cut my shopping this week it was £5 pounds, last week a bit more , iv an electric chair that isnt working cos im just to scared to get riped off and dont know where to turn to who wont rip me off, or the money im scared it will cost, as well as the heating costs i need my heating to be at a set temperature so bricking it about the winter an spring, coping with pain and worry im now totally depressed, i can invision this happening to so many people , with dier concequences i dont think they truley realise how deep this will affect people

  11. Lydia permalink
    October 7, 2011 2:21 pm

    Thankyou Baroness Campbell for looking in to this and good luck with your campaign. I totally agree with the arguments people have made here about the need to keep DLA as it is. It was always clear to me that the changing of it to PIP was only ever yet another government attempt to use Orwell-speak to try and legitimise swingeing cuts against those least able to fight back, those in society they see as most economically worthless and expendable, just like they think by not using the work “incapacity”, ill and disabled people can suddenly be magicked away because the benefit is renamed ESA.

  12. Susan Graham permalink
    October 11, 2011 11:45 am

    As a carer for someone with ME, who is generally bed-bound and unable to walk any distance, I provide transportation for all outings, whenever they are possible. She also requires someone to prepare and serve all meals and to keep track of medication. She had the house fitted with a stair lift and a disabled bath installed in a small bedroom adjacent to her bedroom. We are waiting for an external stair lift. That’s just a sample of the things that are helped by the DLA. She has been ill for five and a half years, has had to take disability early retirement, and relies on the DLA for the expenses related to living with chronic disabling illness. The idea that this benefit might be reduced or withdrawn entirely is frightening.

  13. Gillian permalink
    November 3, 2011 8:25 pm

    I fervently hope that the Baroness does expedite this issue as an amendment. DLA should remain as it is. So many of us will lose out under the new PIP and Universal Credit. This arbitary cut of 20% is a disgrace and has just been plucked out of thin air by the government to save costs at the expense of the most vulnerable in society.
    I have M.E., Fibromyalgia, Depression and IBS. I am medically retired and will never be fit to return to work again. I am currently filling in my DLA renewal form which has taken me 3 weeks so far as I can only do a little at a time. If I don’t get it renewed I will lose my home and won’t be able to survive. Being a private millionaire in his own right Cameron and his cronies haven’t a clue how desperate my situation is and frankly don’t care. I hope the Baroness will fight for us, because we need all the support we can get.

    • Penny Thornton permalink
      November 4, 2011 8:18 am

      I am dreading the phone call from my son, 38, who has Aspergers, to tell me that following his ATOS assessment, euphemistically called a medical, he was given low or no points. This will effectively remove him from his DLA & Income Support and push him into a very low, looking for work payment. He is articulate but that fools many people into thinking that he is “normal” and could normally go out & look for work. Even if he actually found employment, he would not be able to sustain the routine of it. Would not be able to work without huge support built in. Where are the jobs?

      He came away from the ATOS appointment feeling that everything was fine, the woman interviewing him was friendly & listened to him and he was sure it would be OK. I doubt it but would be only too pleased if it were so.

      The point is that before the Bill is passed, before it is legal, people are already having their DLA taken away. Already desperately trying to attain the 15 points needed for ESA.

      Please let DLA remain in name and exactly as it is. It is a safety net. WHy take it away from the most vulnerable?

  14. Michael permalink
    November 16, 2011 10:09 am

    This is going to be a long one so prepare yourselves, I typed this a few paragraphs at a time from my bed!!!

    I am an RAF veteran and have been ill since 1998, attributable to service. I have had several labels over the years and have eventually/recently diagnosed with Myalgic Encephalomyelitis (M.E).

    I just had reviews of my War Pension, DLA and changed from Incapacity Benefit to ESA. I had to have 3 ATOS medicals and the same doctor turned up all 3 times and put a pack of lies and falsehoods into the medicals he wrote, claiming as usual that M.E is biopsychosocial and not the neurological disease that has been recognised by the world health organisation since 1969.

    I had to ask for review after review to be moved from low rate care with low mobility to then move to middle care and higher mobility and finally get the higher rate of Care and Mobility indefinitely. I got put into the ESA work related group and had to ask for a further review on this and eventually have been put into the support group but for how long I don’t know. My war pension is set at 40% disability level for which I am appealing as I believe it should be 60% or higher and that I should be able to claim the unemployability supplement (only available to those at 60% level) but if I get this supplement I have stop claiming ESA.

    The only reason I managed to get through the nightmare of dealing with all of this was because I had a welfare rights advisor from the Citizens Advice Beurea/Royal British Legion to deal with it all otherwise I would not have managed any of it and been made severely ill by the whole daunting experience. I have a stack of paperwork and letters the measures over 15 inches in height from the experience and I’m not even finished yet. I still have an appeal tribunal to cope with in January.

    To top all this off M.E is not recognised by the DWP or by the Veterans Agency as the neurological disease that it really is but is now called Chronic Fatigue Syndrome even though this is simply a single symptom of many illnesses and does not even have to be present in those suffering with M.E. CFS is also an artificial construct dreamed up by a bunch of lying psychologists back in the 1980’s who have since become the main advisors on M.E (or CFS as they prefer it be known) to the NHS, DWP, GPs, MOD etc. They have wasted 11 million pounds setting up clinics around the UK claiming to be M.E clinics and offering psychological treatment that does not help M.E patients but actually make them much worse in many cases. These same people have been paid by and worked for UnumProvident Insurance Company (banned from operating in many states in the USA due to their antics) and these same people have vested interests in preventing M.E sufferers the world over from getting any benefits or financial compensation from the said insurers. CFS trivialises ME and makes it sound like we all justy suffer with being a bit tired all the time when in fact ME has a list of over 60 symptoms and is considered by the doctors that really know the disease to be worse to live (for those with severe ME) with than MS, final stage HIV/AIDS and even final stage cancer. It is also categorised by the WHO alongside these and Parkinsons Disease etc. The UK government claim to fully recognise M.E as a neurological disease!

    So the veterans agency in their wisdom have now decided I don’t have ME, I have CFS “the preferred term for ME”.

    There is no diagnostic test for ME and very little treatment to help with the symptoms, particularly in the UK but really it is worldwide. There are an estimated 250,000 ME sufferers around the UK alone and many go undiagnosed and have no access to medical care, tests or diagnosis. As well as this we are refused benefits and forced again and again to jump through hoops and go through the nightmare of ATOS medicals and benefits reassessments time and time again which makes us relapse and a lot of the time has a permanent and irreversible effect on our health and the disease. I am personally in the severe category, bedbound around 50-60% housebound/couchbound for most of the remainder and very occasionally on my best days get to go to the local shop or drive a mile or so before coming home again.

    DLA should remain DLA and should if anything be increased to help people like me and others who are disabled. Everything these days is costing more and more and without this help we will suffer even more than we already do. Most people who get DLA are genuinely in need and are not and should not be associated with the term ‘benefit scrounger’.

    I consider myself lucky that I worked until 2002 and had the money to buy nice things and have a decent place to live etc (rented only as I can’t get enough on a mortgage to afford a decent house). My parents are helpful and earn decent wages too so they make sure I am OK if needed. I am only 32 years old and got decent qualifications at school and college, had several different jobs before joining the RAF and served my country for all the right reasons, paid taxes, worked hard, studied music and became a great guitarist/banjo player (which I now can’t do).

    I’m married and my wife works full time and is also trying desperately to get her own business off the ground as a freelance artist (she is extremely talented, sculpture, painting, drawing) but she is struggling to find the time and the money needed due to having to work full time and be a carer for me as well as being on a low income etc. We also wanted to have children and I am worried about how we can manage as I can’t manage looking after myself, let alone children, yet my wife cannot afford to not work and we cannot afford to pay for childcare either.

    Through no fault of my own have ended up like this and it has affected not only me but my Wife and family as well. We are both very talented individuals going to waste and struggling along in life due to this wretched illness and having all the worry and stress that comes with claiming benefits and these changes to PIP does nothing but make me worse and yet I still consider myself lucky!

    PIP is nonsense, how can I be independant? I am sure many disabled people feel the same way and judging by the other comments here we all have similar feelings about this.

    PIP is simply a cost cutting exercise and ATOS are being paid over £100 million pounds to front it (and they get bonuses when they perform this task well). Atos is an international information technology services company with annual revenues of EUR 8.7 billion and 78,500 employees. Serving a global client base, it delivers hi-tech transactional services, consulting, systems integration and managed services, yet they can employ so called health care professionals, many of whom are not even qualified doctors, that can write whatever they like or use a computer sodtware they created to generate fixed answers. They are allowed by our government and the DWP to overrule (after only seeing a sick or disabled person for up to an hour at the most, and normally less than 40 minutes) GPs, Consultants and the people who deal with us for much longer and know us and our illnesses much better than they ever would. I ask why is this??

    It’s ok for the likes of Ian Duncan Smith, George Osborne and David Cameron they are multimillionares (as are pretty much the whole cabinet) yet they can still claim taxpayers money in expenses and not provide receipts for anything that is under £250, this to me is wide open to corruption still, just buy something for £2000 and have it broken down into multiple receipts of £250 increments. They spend £750,000 on olympic tickets or send billions of our money into EU and IMF coffers every day, send hundreds of millions in so called aid to countries that can afford nuclear weapons and arms, yet our government cannot look after their own old age pensioners, disabled and vulnerable people and let them live in squaller, damp, freezing matchbox size housing with barely enough money to pay the rent let alone eat and live a reasonanble “independant” life.

    “We are all in it together” yeah right, of course we are!

    Get our money back from the banks and let them fail like you would any other bankrupt and failing business. Close down and regulate them, stop the obscene wages and bonuses. Stop the MP expenses claims and the waste of taxpayer money. Stop paying money in overseas aid and get our own house in order first, look after our own people before others. Stop pointless wars in countries that are nothing to do with us. Create jobs, bring back our manufacturing and lost skills such as engineering. Stop giving governmnet contracts to overseas companies over our own UK based businesses. Cap energy prices for all and make necessary utilities and services such as fuel, water, gas and electricity nationalised and affordable (or cap prices and tax the energy companies so they cannot pass the costs on or have astronomical profits, make them pay from their profits to repair their networks, pipes etc instead of saying they need to invest and therefor they have to put prices up (any other business that wants to carry out repairs or expand has to fund it from their profits or put capital into the business). Spread wealth fairly and make everyone able to have a realistic living wage. Get rid of illegal immigrants, put them on a plane back to their own countries and cap the influx from EU countries. Limit benefits for immigrants (or don’t have any benefits) until they have worked and paid into the system for at least 2-3 years. Make sure that any immigrant wanting to enter Britain have enough money in a proven bank account to support themselves for at least 2-3 years when they arrive, they come here and if they don’t get work and run out of money they are to return home. Only bring in skilled workers that we need and make them prove they are highly skilled and qualified before they enter the country. Give hardworking, British born Citizens priority in housing and social care, benefits etc, especially those in need due to geniune disability, hardship and vulnerability. Have a referendum on EU membership. Start truly asking the people of this country what they want.

    Most of all bring back our heritage and make Britain Great again for British people. “British jobs for British people”. Make MP’s fully accountable, stop the lies, greed and corruption and have them do what they are elected to do: represent the electorate and do what the people want them to do instead of feathering their own nests and getting themselves cushy jobs on the gravy train in the EU after they have finished their term in office.

    There is so much more to this Country’s problems and these changes to the benefits system and the disgraceful way our own disabled, vulnerable and genuinely needy Citizens are treated is just the tip of the iceberg. It is a very sharp tip that needs to be filed down and blunted before it is too late and millions of the poorest people are left in even worse poverty and more dire conditions than they are already in. It seems to me that our MPs and gloriously rich leadership don’t seem to give a damn and intend to carry on regardless no matter the impact it has on us, the undeserving sick.

  15. gordon anderson permalink
    January 4, 2012 9:17 pm

    DLA should remain as DLA. The amount of fraud in this benefit is virtually nil. Like myself, i had to produce medical evidence from my hospital sprcialist prior to being awarded DLA. This can only be a cost cutting exercise by the government. They quote, to help people into work, do they not read the papers, over 2 million unemployed, what work! A very large proportion of recipients of DLA are working of some sorts. I do believe that the unemployment benefit is well and trully abused by people either not wanting to work or because they deem it more cost effective to stay on benefits. The government should leave disabled people alome as they have been through enough with illnesses without the government making out they know more than specialists in hospitals. Keep DLA as DLA.

  16. Joanne frank permalink
    January 5, 2012 1:55 pm

    I believe that dla should stay the same. I have recently lost my highest rate dla on appeal. And I am now finding running a vehicle very difficult I live on my own out in the country, so without this money I will struggle to maintain independence or lose the ability to go out all together.however I do believe the guidelines are outdated and it now needs to take in to account M.e patients who need help getting around even thou they are not necessarliy in a wheel chair permanently. I feel there is not a flexible enough benefit to allow for M.e variations.


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