Care, employment and families – big week for disability

Trust the Government to squish debates on such big issues into the last week in the hopes not as many MP’s will attend / notice / care. As usual, as mentioned by Scope, the numbers of people now not qualifying for care, and therefore having little or no help to prevent a health or care crisis such as a hospitalisation, means the cost to taxpayer escalates despite attempts to save money. Typical Government too, to underestimate how much money good, ‘preventative’ social care costs.

Also, it has not been mentioned here that cuts to disability living allowance -500,000 less people are eligible or will lose out when assessed for it’s replacement. This matters, because the people not eligible for social care might have had the funds to pay for something, at least, but will now have no plan B, surely increasing demand on all fronts. Also, people eligible for social care could previously use their Disability Living Allowance to ‘top-up’ their care, though for many, once assessed for PIP, their benefit amount will be less, if eligible at all, and therefore a further gap in funding exists. The only funding which ‘tops up’ the gap a little is that after several attempts, the Government were unable to close the Independent Living Fund, used to pay for care for those people judged most severely disabled, after the decision was quashed by a last-ditch appeal attempt. However, as this money goes to a relatively small number of people, there is still a massive shortfall. Yet again, the Government has failed to understand how difficult, and complex life can be when you are sick and/or disabled, and just to be seen on a par with your peers requires significant mental and physical energy, and considerable extra costs (phoning ahead, transport, planning for toilet stops, meals, medication… heck, just getting up and dressed even with help, can be beyond me some days!! Those who are able to be on a par with ‘normal people’ in the workplace, in home-life, and comminity life can, and should be given this support — yes, perhaps at quite a big cost. However, to not plough money into it will cost something greater — physical and mental health of sick and/or disabled people will deteriorate costs health and social care systems more in the longterm, and especially where there is also increased pressure and stress from wrong benefit / tribunal decisions too, lives.

Scope's Blog

It may be the last week before Christmas, but politicians are making time between mince pies and mulled wine to look at a couple of important disability issues.

Today MPs have their first opportunity to debate the Government’s plans for reforming local care – including capping care costs for elderly and an end the postcode lottery in care.

Councils say the crisis in social care sits behind big health issues such as pressure on A&E and GPs – if older and disabled people don’t get preventative, community care, they risk becoming isolated and slipping into crisis.

The Care and Support Alliance – representing 75 charities – is today saying that the bill is a real achievement but risks being undermined by a funding black hole which has forced councils to restrict who gets support.

The CSA has published new research from the LSE that reveals that if we had the…

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Choice

Apologies that there was no shiny new post awaiting your perusal this morning, or indeed last Wednesday or Friday… I have had a few very tired days, due to a sleepless night, and a measure of extra illness. Over the past few days several things have been bothering me, but there is one specific thing […]

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Welfare State: Benefit Britain 1949

Below is my thoughts on Channel 4’s ‘Benefits Britain’ programme, aired 12/08/13 at 9 pm. If you live in the UK, I am sure you can watch it online. Be warned, this post contains spoilers! You don’t have to have seen the programme to be able to debate the issues raised… this is currently a ‘hot potato’ about which nearly everyone has an opinion. Would love to know what happens in other countries too, when people are unable to work, for whatever reason.

I have to admit, I was rather skeptical whether Channel 4’s latest programme about the problems with the Welfare State would prove anything. This time, they went back to 1949’s rules about who should, and should not, get benefits. For television’s sake, redecorated a couple of buildings to look similar to 1949’s equivalent of Jobcentre Plus, and gave the 1949 rule-book to a couple of welfare assessors with 60 years experience between them. It was interesting how much tougher the rules were. If you had paid into the system, you got the equivalent money you would have got in 1949, which meant initially that Melvyn and Karen got money, and young Craig only got emergency money of about 7 pounds for a week.

It was interesting to see how much the assessors were allowed to meddle in people’s lives, but it did mean Melvyn got help when he was unable to cope. His brother and sister were too elderly to help, and none of the neighbours said they had any time to help him. This, I think was one of the saddest parts of the programme. If this was genuinely happening in 2013, then he could have been struggling on his own, in debt, with no-one to help. This has actually happened, where people have eventually died of loneliness and starvation because they have been unable to cope and no one has noticed. Back to Melvyn later. (I’ve been calling him ‘Norman’ in my tweets!! D’oh!)

What of Karen? Overweight, with diabetes, heart problems, arthritis, and the rest. She did not welcome the benefit assessor “‘spying'” on her, or the intrusion into her life, but it did transpire that her son did almost EVERYTHING for her. What kind of life does he have? He’s an adult with his own life to live. This kind of thing makes me very uncomfortable, even more so where younger, teenage or child carers are involved. Twitter was not kind to Karen in general, especially when her attitude was on show, and the swearing started. The medical was interesting too, as it asked her to do practical tasks which actually have a bearing on real life! Invisible disabilities were not recognised in 1949, as I expected. She was judged to be capable of ‘light’ part-time work. I’m sorry, but even I do more than Karen round the house and that’s even though I have carers to do the really difficult things. It’s wrong to compare disabilities, but I live with chronic pain, like she does. There is nothing for it but to get on with it. I was hoping the workshop type environment would help her, but she refused to do anything, instead breaking down in tears. I am glad the public have seen how being contant agony can wear someone down, as it is something which can have a profound impact on your quality of life. However, this will be lost on people because they were too busy judging her weight, and saying all she did was sit on her bottom. The last bit was true. It is very difficult to lose weight when you have mobility problems to begin with, for sure, but diabetes and so on does not have to be a disability. I know people with severe diabetes who work or have worked all their lives. I think part time work would help her self-esteem and her confidence, and give her something to focus on besides the pain.  It is true that if she were judged capable of doing some work in 2013 she would not be on full benefit, as disability activists have rightly pointed out. Pain does play absolute havoc with your ability to concentrate and all the rest of it. Karen in a vicious cycle by the looks of it, similar to myself. You are in pain and unhappy so you eat, you are unable to burn it off, so you put on more weight, then you are in more pain, so you are more unhappy and you eat more… you get the idea. She needs specialist intervention to help her manage it all and lose weight, but it’s easy to judge when you only see edited snippets of someone’s life on a television programme. However, her attitude really did not help her, and won’t help her in 2013 either.

My friend Sue Marsh (@suey2y) thinks the producer specified which kind of people s/he wanted for the programme in order to stick to conventional stereotypes. It is true that Karen’s character at least was a stereotype; but she has gone further than this and said “Showing someone bedridden told they must attend WRA (work related activity) wld have been explosive”. This may be true, but someone laid in a bed with an invisible disability would be open to the same accusations that Karen was, of faking or exaggerating the extent of the disability. Also, if Twitter did go crazy, the press would swoop, and after the 5 minutes of interest in their story the person would be dropped for no longer being interesting.  In my opinion, it is the luck of the draw who reads the medical form which describes how your disability impacts your life – I got someone who understood, and I also had lots of pages of close handwriting explaining everything. Someone also said on Twitter that each person was a stereotype: an older person forced to go into a home; a wheelchair user, and a ‘malingerer’ with invisible disabilities.

The final participant, Craig, , who has spina bifida and uses a wheelchair, was completely lovely. Initially he only got emergency help of £7 something as he has never worked. Not because he didn’t want to work. He was completely capable, but had just never been given a chance. However, he was given a training allowance similar to his benefits now, a medical, which rightly judged sedentary work to be best, and a day’s work experience in a call centre. He did brilliantly. More of that later.

The programme raised at least three interesting issues:

1. Disability quotas, introduced after the war and abolished in the 90’s once the Disability Discrimination Act came into force in 1995 forced employers to take on a certain percentage of disabled workers. If they refused, they were punished accordingly. Equally, the numbers of disabled people of working age in work was much higher, about 94 per cent compared with just over 40 per cent today. It was heartbreaking to see the likes of Craig, lovely, with a great attitude, who desperately wanted to work, unable to get even work experience in 2013. He had never worked, so had no work experience, so could not get a job, a vicious cycle he could not get out of however hard he tried. However, the 1945 system gave him more results – work experience, and a job offer, which he gladly accepted. Should ‘disability quotas’ be reintroduced into the workplace?

2. The issue I discussed in my previous post, that one system of assessment does not fit all. There was no “‘mass production'”  but instead, a completely individual, ability based approach was put in place instead. Of course, they were dealing with much smaller numbers in 1945, and mostly war-wounded or industrial industries, which is completely different to someone with multiple impairments today where it is hard to say what work is suitable if any. Of course, I would not have survived birth in any age before now, nor would most of the babies born with multiple impairments who will never be able to work. They simply would not have survived. There are debates to be had about how much intervention is too much, and what constitutes quality of life. However, that is a debate itself and for another time.

3. As was mentioned in the programme, some of the impairments which Karen had existed, but were simply not recognised. The female assessor asked at the end of the programme whether it was right that 2013’s sickness and disability recognise a wider range of impairments. People are living longer, and therefore develop more complex health needs, and the state cannot afford to keep giving out. However, where do you draw the line? I bet if you asked people on the street that each person would give a different answer. Twitter was vocal, and almost unequivocal – Karen was ‘fat’, ‘lazy’ and ‘should’ get a job. That’s putting it mildly. To give you an example, @CavanaghJess said: “Being overweight and diabetic is not disabled love. GET A JOB!!” As was pointed out on twitter, if she was ineligible for benefits they would have been taken off her, or not given in the first place, but her situation does raise difficult questions. We ignore them at our peril.

Someone on twitter did question whether Karen could work in a call centre, but she could work in an office if she had voice activated software that would answer the phone for her, and she could speak to the computer what she wanted to say and software would type. She might be eligible because of her chronic pain and arthritis, however, Access to Work, the Government Grant scheme which pays for help an equipment disabled people need in order to work no longer provides this, so it would depend on whether an employer was prepared to pay the costs. If a small business owner was faced with a choice between someone healthy, with a compliant, friendly attitude, who was prepared to work hard, or someone who needed adjustments made and potentially expensive equipment bought for them, there is no way someone like Karen would have a chance of employment.

At the end of the programme, the three guinea pigs, sorry, participants all met up and were asked by one of the assessors who they would give the benefits / allowance to if only one of them could have it. Melvyn, the pensioner said Craig was more deserving than he, despite his tough experiences in the programme. However, Craig refused. Karen then kicked off and said she had more wrong with her than Craig and therefore deserved it more. Karen and Craig both had different attitudes to their disabilities, and it really showed.

The two assessors both had questions at the end of the programme. One, questioning that there’s something really wrong with a system if it cannot provide for the most vulnerable (hear hear!!) and the other assessor questioning whether the range of conditions considered for help was too large, and questioning whether the system should keep giving handouts. Would love to know what you think!

There was a lovely moment at the end of the programme where the ‘assessors’ gave Melvyn back the watch he had pawned in order to survive (his grandfather’s) but many others have to do the same, with no one to buy it back for them.

Would love to know what you all thought of the programme, or indeed if you have any opinions on, or answers to any of the questions raised in this post 🙂 Until Friday…

 

The welfare state: If Hawking can work…

English: NASA StarChild image of Stephen Hawking.
English: NASA StarChild image of Stephen Hawking. (Photo credit: Wikipedia)

Last year a majority in the British Medical Association have come out in support of disabled people, declaring the Work Capability Assessment (WCA) unfit for purpose. Additionally, after many months and much campaigning by disabled people, ATOS Origin, The French IT company given the contract to oversee self assessments and carry out face-to-face assessments, have been forced by the Department for Work and Pensions to retrain their staff. This is even after previous insistence that everything was fine and ATOS would not be fined, despite  appeals overturning the previous decision that the person concerned was fit enough to work costing £66 MILLION in 2012-13 alone!! A report published by a coalition of more than 90 Disabled People Organisations and Charities in 2012 produced a damning verdict as to the impact of assessments and cuts on disabled people. In particular:

  • Nearly 9 in 10 (87 per cent) welfare advisors said the constant re-assessments for benefits are damaging people’s health
  • 9 in 10 (90 per cent) welfare advisors said that too many disabled people are slipping through the net and are left without adequate support by the welfare system.

Mencap have also raised concerns over whether there is enough understanding of the way learning difficulties affect people, and how this impacts on a person’s ability to work.

Despite all this, GP Philip Peverley has recently claimed that: “I had considered, at one point, putting,  up a portrait of Professor Stephen Hawking in my consulting room with a caption that said, ‘This bloke is not on the sick’.” To those who are entirely unaffected by the benefit cuts, and have no reason to disbelieve the skewed headlines produced by some sections of the media, this kind of statement may well make sense, and is the kind of logic behind the Goverment’s portrayal of benefit claimants as ‘scroungers’. However, to think this, and indeed, to declare it publicly is to completely gloss over a whole host of issues which he may well know nothing about which prevent disabled people accessing work, and a host of medical issues which make work difficult, some of which I have described below, This is to say nothing of possible discrimination, access barriers including need for specialist equipment not covered by Access to Work Grant, difficulties getting to and from work, and lack of transport to get there, extra costs, pain, fatigue… the list goes on.

I admit there may be some truth in some of what he says including that some people well enough to work to everything to prove they are too ill to do so. If there weren’t there would be no need for reforms, however, the levels of fraud are not nearly as high as the Government would have you believe. However, according to the article, “A poll of 4,000 family doctors by the Department for Work and Pensions in May showed three quarters feel that – even when there is no medical need – they are obliged to issue sick notes to patients”. This may well be true, and it is not the first time I have heard a GP asking that they could opt out of assessing patients fitness for work. If not they, then who? GP’s position as ‘Gatekeepers’ to NHS services makes them ideally placed to have overview of the main issues affecting a patient and the clinics they see and services they receive. I have already established that ATOS are in no position to do this on GP’s behalf, despite Peverley’s claim that “ATOS nearly always gets it right”!! He has also failed to acknowledge that Hawking is able to to pay for costs associated with his disability in ways that the majority of disabled people can only dream of. Money means access to better care, better food, higher quality housing and a better quality of life in general. This will have a positive affect on his impairment, despite its severity. He is so intelligent he can work using his voice only and has all the support he needs, something very few disabled people can say. Journalist Sonia Poulton‘s response to this article was to post a tweet containing Peverely’s reg. number for the General Medical Council for anyone who wished to complain!!

The last time I worked was in 2004. I did the kind of office job referred to in the article. I did full time (8.30-5.00) work for 6 weeks to cover sick leave, in the summer holidays while I was a student. For two weeks, I walked to work while my parents were on holiday, or I got a lift from colleges if they passed me on the way to work. Otherwise, my Mum drove me there and back. I don’t remember if there were steps in front of the building or not. I do remember that there was a lift. This was in the days when I was still on my feet, without a walking aid, or a wheelchair, except I used a scooter in term time to negotiate university grounds. I was also on minimal medication, and no prescribed painkillers. This was the year before my diagnosis of Chron’s disease too. This is all significant, because by the afternoon, I would have severe shooting pains from my hips to tips of my toes, and often stomach cramps too. I would be so tired I would have uncontrollable giggles, and my speech would be slurred. How very professional. I struggled to concentrate to do meaningful work, and I made mistakes. I was never disciplined over it though. Clearly not capable of office work, despite this doctors claims.

What about if I were to attempt this work today? Well, before I got to work I would have to be up very early because it would take me a long time to get ready. If my carer phoned in sick, the office may not be able to cover it, as I am often the first name on the rota, and not every one can work that early. Even with care, I often have to go back to bed to sleep off the effects of a disturbed night, or the effort of getting up and organised. If I did not do this, I would be asleep at my desk. This is often the case even try to write blog posts, which is why there was no post on Wednesday this week.

What about getting to the office? I am unable to drive because the part of my brain responsible for spatial awareness is too damaged, and reaction times were so erratic in the simulator during my driving assessment the Occupational Therapist advised that I would need to use hand controls to be able to drive but that I lacked the necessary co-ordination. Getting the bus is also out of the question, as I do not have the strength to propel my annual wheelchair on my own, and my electric wheelchair is too big. Taxi it is then. However, most taxis are the wrong size or shape to fit my wheelchair, and those it will fit are in demand. Even if I can get one, there is often no space between my head and the roof off the car, causing me a head injury if it crashed. I have been in town before, and even though I have pre-booked a taxi to take me home, none will turn up. I would need a motability van, but as I can’t drive myself, I would need a PA to drive one for me, even though funding is being squeezed in every budget including Access to Work, and the list of things which can be funded is now minimal. Add in cuts to social care and the disappearance of the Independent Living Fund in 2015 and this is an impossibility. (To read about the impact of these cuts on another disabled person, click here to read an excellent piece for the Indy’s Comment is Free by Jess Thom).

Assuming I could get there, I would not consistently be able to do any work for so many reasons… My pain killing medication exhausts me, making my speech slurred, and even then it does not take away all of the pain, and I often squirm in my wheelchair due to back pain, and other pain I cannot write about in a public forum. Then you add in the times my ileostomy bag bursts (which I cannot change by myself, and the bladder spasms causing me to wet myself. Have I forgotten anything? The last time I filled in a WCA form there were at least 3 or four extra pages of close written small script explaining my disabilities and the effect these have on my day to day life, including all the equipment I need to help me. Still think I can work?

Of course, I would love to be able to work, but at the moment is something I can only dream of. One of the reasons for starting this blog was to give another purpose to my day. I have been surprised and delighted to the response from my first post for a few weeks, about childhood dreams. Before you lose the will to live, I shall go off and take my medication, as the dispenser fondly known as the UFO is making itself heard! Until next week…

Why are disabled people fighting the cuts?

Jane explains what’s at stake much better than I can. I started allowing care to be put in too lste to apply to the ILF but perhaps I would have agreed more readily had I been given a taste of the kind of independence people with ILF have had. To hsve had it, and no for it to be snatched away is Indeed cruel. Independence is expensive so no one wants to vouch for it, all they see is pound signs. Many will be reduced to the kind of kife I often have. Bored because energy or support or money is not there to di what they want to do. Please pray about ilf if you pray, and fight with us before it’s too late.

Jane Young

Since the Coalition Government came to power, it has become increasingly clear that through a combination of austerity policies and ideological cuts (or ‘reforms’) the independence which disabled people have fought for over several decades is under real threat. These threats include, but are not limited to: the replacement of DLA by the ironically-named Personal Independence Payment, the scrapping of the Severe Disability Premium under Universal Credit, the closure of the Independent Living Fund and the pressures on local authority adult social care services which are increasingly under-funded and over-stretched. These latter two threats go hand in hand, and both are in the news today.

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Welfare State: The terrified get more terrified as PIP looms large

This post is in response to last night’s Dispatches programme on Channel 4. However, you should be able to follow this post even if you haven’ t seen it. It is also in response to the ‘daily post’ as it is the antithesis of my ‘happy ever after’. Read on to find out what my happy ever after actually is!

Disability Living Allowance (DLA) currently costs the UK economy 12 biliion and is paid to 2 million adults. The government wants to save two billion pounds by taking half a million people off the benefit. ‘Dave’ says anyone who has had to fill in the forms knows they need changing. He’s only half right. Anyone with a dependant adult who can do nothing or almost nothing for themselves is relieved that they can simply tick a few boxes, instead of revisiting the hell of the current form making them list everything the person could not do and why, causing emotional harm to the person who fills in the form. For anyone else whose severity of disability falls in between two check boxes or fears they are unlikely to qualify, their fears are overwhelming and varied. It is all of this which has given rise to the documentary.

Esther McVey, the current Minster for Disabled people, says DLA did not take account people whose disabilites weren’t physical. However, I have read a blog by a blind person who gets money towards aids and mobility now who fears they will get nothing from PIP,  read a news article about a woman with profound and multiple learning difficulties who was assessed as fit for work, and read a carers opinion that while the understanding of mental health problems was limited on the DLA form, on the current work capability assessment forms it is even worse. Who is to say the PIP form will be any different? Also a major difference between the two benefits is that DLA focused on ‘self-care’ where appropriate wheras PIP focuses largely on people being ‘cared for’ therefore ruling out hundreds of people. I guess this is the governments aim, but it puts understanding of how disability affects people back by 20 or 30 years. Esther Mcvey the minister for disabled people argues we need a benefit which is “fair, clear and sustainable”. Few would argue with that. However, the Goverments arbritary restrictions on how far a person can walk being the condition for the mobility part of the benefit causes problems for thousands of people who can walk it but it would take them a long time, cause them to be excessively tired, or be in excruiating pain, or a combination of all three for some, including me. Add in the thorny issue of public transport which also affects thousands and you have problems galore, as adepitan explained in the documentary.

Paralympians explain it got them to the paralympics but also they have the same difficulties as other disabiled people. They are neither superhuman nor more able, argues Natasha Baker. Likewise Sophie Christiansen worries she will lose her car, and asks “what does 200 metres tell anyone?”

The DWP’s statement says that the 200 metres has to be completed in a timely, safe, and reliable way. In my opinion this may well be the saving grace for many like Christansen and Baker. However, this caveat was only re-introduced thanks to a successful campaign by disability activists after the government tried to remove it.

Re-assessment is another issue. People were previosly on benefit for life if their condiction wouldn’t improve but now will be tested regularly.  Lawrence clarke argues that he is asking for the support he needs to take control of his life and how is reassessing him saving money.

Esther Mcvey says 50 percent of people don’t have medical evidence to back their claim, however if goverment wanted evidence they’ed only have to ask to see the form I submitted when applying for income benefit or ask to see my MASSIVE medical notes.

However, is this type of documentary helpful in raising awareness of the issues both to disabled people themselves, and the general public, or is it simply scaremongering, ramping up people’s anxiety unnecessarily before they’ve even seen the final form?

There are more concrete worries as well because the company being paid almost £400 m to assess people has a “controversial track record”. I have to say, that is some understatement.  ATOS are the French IT company who asses people’s eligibility for income replacement benefit called Employment and Support Allowance if someone is unable to work. However, ‘widespread protests’ by disabled people and a cost of appeals against desicions of  £50M a year; 40 percent appeal and 40 of those desicions are overturned. None of this is likely to fill disabled people with confidence. Even the ‘Public Accounts Commitee’ have roundly criticised both ATOS and the DWP.  ATOS however deny everything and say less than half a percent of appeals are now due to mistakes in their reports. Esther McVey disagrees too saying ATOS keep within the government’s “strict rules” and disabled people are entitled to give their opinions on the process of assessment. Sorry… but is the disability minister even listening?

There are further questions over whether ATOS are fully prepared and qualified to carry out the new assessments. Many, apparently, will be undertaken by physios. Sorry,  but a physio does not have the medical training to understand the problems my surgery caused and continues to cause, or the way one thing impacts on another.

A former marine casts doubt over the thoroughness of the assessment process and says the nurse was shocked at the sight of his prosthetic. It doesn’t bode well! He did however win his appeal.

Barroness Tanni Grey-Tompson says changing DLA itself was preferable, but the goverment wanted sonething that didn’t sound so big and expensive! People are either superheroes or scroungers, regardless of fraud figures, she says. I have to say I agree with her! By enlarge, the government have the mainstream media on their side in helping to perpetuate these myths in my opinion. Barroness Grey-Thompson says she “doesn’t want to see disabled people ghettoised and locked away” as all progress made by disabled people will be lost.

“DLA has allowed disabled people to live independently in a society that’s not really built for them” says Adepitan. For me this is the crux of the issue, and in my opinion something you only fully understand once you are in that situation yourself. Only time will tell if some of the worst fears are realised.

Today’s daily prompt asked me if I am living my “happy ever after” and if not, what would need to change for this to happen. In an ideal world I’d be married to mr right,  be able to cope with a least one bairn and potentially be working! oh and be living in a supportive, understanding society!!

Realistically, I’d settle for the cuts being more widely spread, and for the current reforms of both DLA and the NHS to be revoked. Instead, DLA would be reformed from within with a different, capable contractor at the helm. As for the NHS, current attempts to privatise it would cease and money would be saved by the implementation of effective, preventitive measures,  and more front line staff would be employed not less, all saving the government pots of money in the long-run. The end.