Monday, 5 December 2011

Care in the Community

Nothing politicised me more in the 80s than Care in the Community.

My brother was a rising mental health nurse star at the time and talked of little else for years. My family heard in graphic detail how Institutions up and down the country were closed and residents placed in the community with little or even no transitional support.

The idea was important and progressive, but as with so many policies, the implementation was often shocking.

DLA - Disability Living allowance was the scheme put in place to provide for the daily living costs disabled people faced to allow them to live "in the community" at all.

The Independent Living Fund provided extra support on top of DLA to just 21,000 of the most profoundly disabled people in the country. It amounted to an extra £300 on average, per month to allow someone to live in their own home,  saving the state many thousands more on care they would otherwise have had to provide in residential centres.

Today, this government are scrapping DLA and the Independent Living Fund (ILF). DLA will be replaced with Personal Independence Payments (PIP) and the numbers claiming will be reduced by 20%. They are cutting the lower rate of DLA care payments altogether. It is not yet clear whether or not the ILF will be replaced at all.

Under Universal Credit, Iain Duncan-Smith's new flagship welfare reform policy, seriously disabled children will only receive half the amount they do now.

Children disabled from birth will no longer receive contributory entitlement when they reach adulthood. This will seriously limit their ability to live independently from their families.

Sickness benefits for those who have paid into the system will be limited to just one year for most, limiting the ability of those with long term conditions to live independently, making them utterly dependent on family or a partner to survive.

All of these cuts are proposed by Mr Duncan-Smith's department.

Today I read that Mr Duncan Smith admits that Care in the Community was a "£100 Billion Failure"

Those with mental health problems, he says, did not get the community support they should have done.

Well, Mr Duncan-Smith this is horribly true, and nor did the physically disabled. Your proposals, when taken together, represent the single biggest attack on independent living to them in recent memory.

I haven't even mentioned the cuts to social care happening up and down the country. The single biggest threat to dignity and support the disabled have faced.

Mr Duncan-Smith your weasel words on Care in the Community belie your actions. Cutting almost every vital aid to independent living will only send us back to the 50s. You acknowledge the problem. Now address it.


  1. Brilliant article Sue! IDS criticises care in the community, while stripping sick and disabled voters of there means to live in the community. Care in the community may have been implemented far more effectively, but it still provided some independence. This coalition has stripped back services and benefits for some of society's most vulnerable, purely on ideological grounds and it's sickening. Life for the sick and disabled is regressing at such a rate it's frankly terrifying!


    The public sector unions are seriously peeved at how their customers are being treated. As bad as you might think of most of us, the majority of us do the jobs we do because we care about our customers. And I have to say that I'm pleased that one of the unions has chosen to reach out to the community. My personal experience is that whilst we don't get everything we ask for, the unions have been able to implement change. Besides, it wasn't long ago that you were talking about people not listening. This is a way to join forces and spread the word. I'm already a member of another union but am spreading the word about this because I think that too many in the community are isolated and without power.

  3. Sue, I read your blog daily, this is the first time I've posted - mostly because I can't very easily, but I hugely admire you & how you manage to say so eloquently what I'm feeling.
    I hadn't heard anywhere else that the new PIP was planning to remove the equivalent of the DLA mobility payments though. Could you let me know where that is stated?

  4. I've been looking for the figures for how much the residential units, hospitals and institutions used to cost, but like most pre-World Wide Web data it seems scares on the WWW.

    If anyone finds anything, yell really loud; I can hear everything.

  5. What did David Cameron say before, during and after the election, words echoed by George Osborne in his 1st budget, words heard from the lips of Maria. Miller and Danny Alexander? That the most vulnerable would be protected. If it's not mentally ill people and the physically disabled, THEN WHO?!

  6. themselves obviously,

  7. From what my CPN has said the impact of services users losing benefit and the stress of the appeals/tribunal process is having a massive impact on her workload. It is the same for her coworkers and admissions are up. The cuts to services also compound this. This must must also apply across the entire health spectrum. Sick and disabled people are scared about what the future holds. Politicians of all persuasions simply view us as a massive drain. Talk about abdicating social responsibility, this is supposed to be a civilized society!

  8. did he not have to say all these things to the queen when elected what i mean is he lied and should he not be held accountable for that

  9. Mason Dixon- well acute admissions units still exist today, albeit with far fewer beds than the older ones. Perhaps there is info on what a stay in one currently costs? Hope this in some way helps. Regards Mark.

  10. his solution, as always, is to keep families together and prevent them breaking down. Hmmmmm

  11. My understanding was that in general, it has always cost more to keep someone in any kind of residential setting for a single day than it would to pay them a supporting benefit for a week. This is complicated though by the matter of how many DLA claimants there are now compared with the number of residential patients per capita 30-50 years ago.

    This is important because I'm sick of arguing that government policy is a false economy and then being told my view is apparently 'spend more money' as if the government cheerleaders don't know what a false economy is. The needs of sick and disabled people do not go away just because a minister wants to move the goal-posts on them.

  12. If they get ride of the lower rates DLA ,cane we get the lower rate of pips instead.Has we have to reapply of pips when it comes in or will you have to be in a coma to get it or dead or just in bits

  13. Anonymous - There will just be Lower/Higher rate mobility and Lower/Higher rate care under PIP

  14. thanks sue LETS hope if you are on low rates on DLA you should get the lower pips for mobility and care when we reapply for pips .AND IF YOU GET HIGHER rates of DLA you should get the same on pips

  15. Yeah, Mason the politicians do seem to think a bogus computer test rigged to fail most sick and disabled, thus changing the criteria for disability, is the solution. It saves them money and their lack of conscience obscures the human cost of such draconian and unreasonable tactics. You have a point and it must cost significantly/vastly more to admit people into residential care, than the outlay of various benefits and care to enable independent living. So if they aren't suggesting a return to residential care, because care in the community has supposedly failed, what exactly are they planning- a continuation of their disability denial? It's frightening really.
    There has been an increase in sickness/disability benefit claimants over the years, but is this not just a result of the growth in population? After all fraud is very low at 0.5%. Lets just hope that the new figures make them reconsider. Mark

  16. Incapacity Benefit was introduced in 1995 to replace Invalidity Allowance. IB then rose by 200,000....over ten years. It peaked in 2005 and began dropping. When measured over the thirteen years it was active, IB did not go up at all.

    Despite the actual evidence, the government of the day and its successor didn't seem to think the IB numbers were dropping/staying virtually still enough and Labour were especially happy to pretend they were not being 'tough enough on frauds' because it meant they could be as tough as they like: the media would scream for more.

    The last time an out-of-work benefit for infirmity did significantly rise was Invalidity Benefit in 1992 to 1995. This coincides with the introduction of DLA, which replaced Mobility Allowance and Attendance Allowance for the under 65s. There was a significant campaign to encourage uptake of the new benefit and whilst many of the claimants were in work, former residential patients rarely were, so the Invalidity Benefit went up too. This rise was predictable, not inexplicable.

    Rather than educating the public about it, the Major government responded to negative headlines about how much disability benefits had risen by consulting some of our friends at Unum Provident. Even though the rise was predictable and there are only so many sick and disabled people in the entire universe, no one stated the obvious: it would stop rising. Funny enough, the introduction of Incapacity Benefit coincides with year that the claimant count did stop going up. But that is all it is; a coincidence, the rising claims had to stop somewhere and lo and behold, they stopped roughly around the figure you'd expect in comparison to DLA claimants.

    Certain 'experts' like the TaxPayers Alliance like to think the only explanation for rises in claims since the 1980s is 1) fraud and 2) three successive governments massaging employment figures by parking redundant middle-aged industrial workers 'on the sick' ever since Thatcher did it. Or they could just look at when the rises actually occurred: the majority of it simply being that period from 1992 to 1995.

    Disability Living Allowance has grown consistently in claims since it was introduced. This is partially because it is under-claimed and too many who try are refused it unlawfully, with decisions often conflicting with the Disability Discrimination Act of 1995 onwards and most recently the Equality Act. The other reason is because the Conservatives in a rare case of forward-thinking inserted a mechanism into DLA that meant pension-age claimants instead of claiming Attendance Allowance when they retired would carry on claiming DLA if they already did so. This effectively meant that figures have been siphoned from Attendance Allowance for the last 19 years and added to DLA. Pensioners are a demographic the Conservatives are careful not to attack, yet if they had problems with the bill for DLA, the bill for Attendance Allowance would be beyond justifiable by the bar they have set for us working-age claimants.

    Add pension-aged DLA claimants to AA claimants and the growth for DLA looks paltry; accounting for demographic changes, DLA claims have fallen, not risen. The actual rising has happened entirely because the population is getting older. But when ever a minister cites DLA growth as a justification for the Welfare Reform Bill, they never, ever fail to include pension-age claimants to inflate that figure.

    Seriously, where the people being targeted are concerned: benefits for sick and disabled people have not risen one bit in 10-15 years.

  17. Of course it was bloody was set up to fail.They couldnt care less about anybody unless you are part of the elite.I dont get surprised anymore by the likes of IDS and the rest and thier increasingly cycnical tactics.Thatcher said thier is no such thing as society so therefore no community and they are making bloody sure there is no care UNLESS of course you can afford the lobbied ,by the likes of we know who, for private healthcare.
    The new figures will not make them reconsider anything.Thier long term plans where set long before labour got cosy with unum and atos and they wont stop now they are in power.
    Watch what happens to all these jobs that they have announced are going in the public sector.All or a big chunk of them jobs will now become privatised and the jobs will be available with lower wages and crap terms and conditions and guess who will be on the boards of the these companies....This govt knows the price of everything but not its worth to society but then again according to thier blue queen there is no society is there ..If we dont get rid of them next time god help us all and if we all survive the coming depression then it should be a priority...

  18. why are we not taking these facts and figures to No 10 and asking the question, why do we just show our frustration here. many times i have mailed my Mp (Labour) and told him abt the situation just get same old response i voted against it. Can we not unite together and vent our anger frustration at the doors of the people in power why do we rely on Mp's and disabled non disabled Lords to fight our cause when we should be there fighting it ourselves

  19. As Massachusetts governor, Romney worked with a Democrat-led state house to close a budget shortfall and signed a healthcare overhaul that required nearly all state residents to buy insurance or face penalties.

    Could this be where we are heading?

  20. Anon @ 01:55, because the Cabinet know what they're doing. They don't talk about it, they just do it. You can slap facts right in their face in public but they can make up so much bull on the spot that both sides will be treated as equal and you're unable to refute it on the spot.

    I asked Maria Miller a direct question through my MP and she pretended I asked a completely different question:

    It's funny because I included the bit about eligibility for higher-rate components for Deaf and Blind people as an example to make sure I would be understood as clearly as possible. As if by magic, this somehow actually worked against me and she still managed to 'misunderstand' the question.

    So we don't just write online and in articles; we're really working with others and have attempted to work with politicians. They just don't want to play ball and we can't go to the media because they frankly don't give a cow's arse and even the Guardian will only offer a bit of space for Comment pieces around the same time every month to meet their disability agenda tokenism quota.

  21. Ah hold on, Maria Miller's reply was the post after that, the URL I posted shows my question to her and my MPs reply to me.

    Miller's letter to me is here:

  22. Thnks Mason read Miss Millers response she just dont get it or does she?

  23. Cheers Mason, some of this is new information to me. The politicians are amoral, ruthless and relentless in their aim to strip us of our means to exist, purely to save money. I really wonder what they expect will be the consequences of this? I mean, just because they deny disability, like Unum did to their clients in the US, it doesn't actually make us suddenly more attractive to employers, or more able consistently hold a job.

    I am comparatively new to the online disability movement, so am learning as I go. I was also shocked to learn last night that 38 degrees appeared to be disinclined to support the sickness and disability cause, despite its real urgency due to the numerous suicides and obvious threat of poverty for many vulnerable people. It's very demoralizing to find that saving trees and libraries is more important to their members than the sick and disabled. Indeed some of the comments on their website even suggest they support the tabloid propaganda that we're all scroungers and fakers. It implies that our cause is simply not trendy enough for there members.

  24. I also noticed a TV ad by Unum concerning insurance policies to cover workers in sickness or disability. It really looks like the coalition, and labour before, want to eventually remove the welfare state. The future looks very bleak.

  25. My son received care under CAMHS (child and Adolescent Mental health unit)and has been on high rate DLA since childhood. Once he turned 18, the care in the community was non-existent. I was literally given a pat on the back and was told I was doing a great job - then left to get on with it, as we were coping. Fair enough but now, despite the evidence to the contrary and without even seeing my son, he has been placed in the work related activity group. So I guess that is one way to remove his high rate DLA then... so we continue our caring role as a family but without any financial support as I guess that means my carer's allowance will go too. And no, IDS, we are not a family of feckless scroungers - OH works long hours and I gave up work to assume the caring role when it became clear son could not cope.

  26. Anonymous 09:25, I am sorry to hear about your son, these politicians are amoral. Does your son have a CPN (community psychiatric nurse), if not, this may provide some support for your family. They aren't a panacea but in my experience they can be helpful.

  27. Well I fear that I will lose Mum either because of her age and vulnerablity regarding falls etc...but as said earlier elsewhere she has been diagnosed with cancer and we've been told she's too weak for most possible treatments open to her. So that is basically saying its terminal, just for now not an actual time limit being put on Mum's life.

    And yet if so ill, the Radio Therapy she's just been put through has made a difference to quality of her life and so far as it has not seemingly spread there are some positives that suggest if they would give it a try we could beat it? She found the treatment easier than we were told and so far has avoided many of the side effects we were told she would suffer.

    So she must be stronger than they think...but I appreciate every case is different.

    They said its a case of she'll go of age/natural causes before it gets her and if not the cancer will get her...there is also short term memory loss probably caused by the falls and hitting her head as she fell. I saved her last night from hurting her body by thinking ahead and having a thick duvet aroubnd her side of the bed but as she staggered she managed to hit her head on the wall(so too late now I have pillows and cushions there in case it happens again)Usually I always manage to think ahead and guess all possible scenarios...

    Meantime, I survive on DLA and Housing benefit(with the threat it will be taken away and I may have to attend assessment/test sometime soon)

    I had to fight to get DLA with the help of the CAB(I was never offered or allowed to even have IB)even though my health was poor.

    And yes, I am looking after Mum I would because I love her but when I lose Mum I am worried about my future situation and whether I'll have a roof over my head.

    We've just applied for Attendence Allowence(I'm told we should've had it sooner by all departments be it DWP, Social workers, District Nurses, carers, local authority)before the now added worry of Mum having cancer.

    We had help from a professional department of a local authority that fills claims in for people all ythe time and still I have to supply some more details that the DWP want to know and were all explained already.

    And yes, like others all I keep hearing all the time is how well I am coping and how good I am at caring for Mum.

    My own condition is being controlled by strong drugs with possible dangerous side effects and I could suddenly become very seriously ill at any time so I have that to contend with...but I just know if I attend these tests they'll say you are fit.

    The first test I had when I first tried to get any help the Dr used by the Government said that I was ok and I managed to see the report he wrote and it was lies from start to finish.

    Another Dr said I should never have been called in for tests and the information was available via my Dr and Consultant/medical records...

    But of course now its all private firms/computer software what chance do most if any of us have especially as has been said already they move the goalposts and also put out a lot of mis-information/spin often with no solid statistics to back up the figures and they are unchallenged.

    The mass public believes what they hear in the newspapers or on the news.

    And only one side is heard...the other is ignored for some reason.

    I have seen the MacMillan Nurses charities campaign about trying to stop the tests for people on Chemo and Radio Therapy etc...regarding preoving you are ill and cannot work and should be given support thanks to it being mentioned on their site and here but I have not seen or heard it anywhere else...why?

  28. Sorry about the typos in the previous post I did proof read and corrected them all(or so I thought)

    I obviously need a new pair of glasses...or a new keyboard...

  29. Anonymous 01.55 I do those things. In fact I have donated my entire life for over a year to attending conferences so that I can speak to politicians directly, appearing on TV and radio, writing articles, researching, trawling through every committee report and hansard......

    DPAC take more direct action as do many other groups.

    Sorry if ALL of that is not enough for you, but please feel free to organise something yourself! After all I'm only one woman, not representative of the entire disability movement.

  30. Oh Sue, You have got it wrong not for one minute disputing what you do far from it i know how much effort you put believe me i do. But i think a greater effort is needed by everyone we all come on here spouting off about the hated govt it would be nice just to see a more concerted effort,
    Sorry if it offended you in any way.

  31. Oh ignore me. I'm feeling ill and over-reacted. I'm just so tired, the thought of doing more than we do is too much.

  32. Oh and welcome Mark and Kate :)

  33. I've got a rebuttal of John Humphrys' atrocious programme to get through which will keep me busy until Spring. Won't be time and energy for much else. Thinking of doing it in serial and posting chunks in blog-posts, which could also help me crowd-source proof-reading and spot any errors I make.

    The BBC has yet to make a proper response and the time for them is running out. This Friday marks the ten working days since they last made any contact with me at all and after that, I can legitimately bring the matter of the total lack of factual rigour in The Future State of Welfare With John Humphrys directly to the BBC Trust.

  34. Libertarian "Social Darwinism" (Survival of the Financially and Physically Fittest) Adam Smith economics. Weed out the weak, sick, handicapped, unemployed and welfare

  35. Wow! nice work Mason - you go for it.

  36. Well if you want to see a rant about IDS see tonights episode of Max Kieser on RT ....this man is spot on .If you missed it tonight(its on now) it will repeat so look out for it...Stacey and Max slam ids big time and the thieving bankers

  37. In an email, Harrington said: "Macmillan provided me with compelling evidence that different cancer treatments can have an equally – and varied – debilitating effect on individuals. However, I agree with the government that forcing people to a life on benefits when they want to work is wrong." The government said that patients would be allowed to prove they were too ill to work with "documentation", and would not always be asked to undergo a complete assessment.

    i thought the guy was supposed to be independent, guess i was wrong

  38. To anonymous @1:55.

    I believe many of the people commenting here do so as well as doing what they can to fight what is going on, be it writing to MPs, signing petitions, responding to the various inquiries and consultations or, for those who are able, taking part in the recent marches.

    The problem though is that the government is not playing by the rules.

    Take for example the DLA consultation last year which was shortened by 2 weeks, done over the Christmas period and was still ongoing when the government announced its plans regarding the future of DLA! How could they take into account the consultation if it was still ongoing? In other words the decision had already been made and the consultation was simply an exercise in PR, done so that they could say disabled people had had their say.

    Take again any question posed to the government regarding benefit changes. I personally have not yet had a proper response. I am patronisingly told that I am only worried because I have "not understood". I am told that all changes are for disabled people's "good".

    I have had the same exact letter back in response to 3 completely different questions. They are not listening or trying to answer. There appears to be a standard letter to be sent out to anyone who dares question them. They will then bulldozer on with their reforms regardless, while saying that they have answered and responded to any concerns.

    It is a disgrace. I am a peaceful person who has always believed in the democratic process. But faced with a government who hide behind it I am beginning to support more radical means.

  39. Loopy, "Radical means", i believe it will have to be that. I still can't believe Milliband wont step up and be counted admitting that his party were wrong in implementing the WCA the way they did. I say admit it take the mauling off Cameron but then set about telling how he will do it.
    I am just like everyone else pissed off frustrated and very very angry about the lack of respect media coverage about this massive issue

  40. If you think Milliband will step up on these issues ot just jabber at PMQs time then look to who he takes advice from and the lobbyists he listens to to have more of a clue than even he does of what he will support.Read Private Eye...

  41. This news also most appalling

    Bullied Hattersley man David Askew was unlawfully killed
    David Askew Greater Manchester Police) David Askew, 64, lived with his mother

    Victim 'was harassed by youths'

    A man with learning disabilities who was subjected to 30 years of "torment" was unlawfully killed, an inquest ruled.

    yes 30 years it's hard to believe i myself have been abused by the DWP for 30 years thank god it hasn't been by any local people

    none the less it has been very tough overall and although at this time things are quite my end that only happens for only a couple of months or so at a time or if the police have been round to see me to make sure I'm ok as i need to draw breath before the next battle with the DWP starts up again

    Personally i wish i was like David askew and died at least i know what he went through even thow his abusers are different to mine they both have the same effect and that is that they both kill you at the end of the day through severe stress in davids case his heart packed up in my case it is my stomach and lung /heart so am in constant pain

    But at least with xmas coming i will and hope get a bit of respite i cant go abroad with the family as much as i would like to do as my balance is slightly off and has been now for a few months because of lack of intake of food because of the ongoing stress from the DWP but i have to press on the best way i can and that is to stay bed bound for 16 hours a day staying up for no more then four hours at a time so that my body can cope with the very smallest of intake of food

    With the government like Neo-Nazism things for many people over the coming years will remain very difficult indeed

    The whole of Europe is a very dangerous place to live if you are sick or disabled and the coming years will prove that to be true as we continue on our journey in the trials of life

  42. Government ministers have gone on the record, in Parliament, saying that the two rates of "daily living" will NOT amount to simply removing the entitlement of those on lower rate care at the moment. They don't explain what it will be, but they were very clear (and thus rather bound by the idea) that that won't be it. It's very hard for them to go back on such clear, specific statements to parliament.

  43. But Sam, there is so much more to it than that, in particular due to the passporting system unique to DLA. This was highlighted time and time again in the DLA consultation.

    For instance mid rate care opens up all sorts of other things such as carers allowance or housing benefits for under 35 year olds. What will the new arrangement be? Will you now have to qualify for the higher rate of PIP? Will this be more "difficult" than qualifying for mid rate DLA? Does this mean that many people are suddenly overnight going to find themselves without any means of support at all or any means of paying their rent?

    It is not just about losing the lower rate of DLA, although that is obviously also of huge concern.

  44. Sam - Lower rate care is going though no? Your faith in the clarity of their protestations is touching.

  45. But - the children will be alright because this year's "X Factor" finalists have done a charity single for hospices. Won't they? I mean, the government isn't taking VAT so everything must be peachy. Could the cuddly ConDems be wrong about this?

    One of the finalists was himself slated by the tabloids who claimed he had lied re his medical condition when claiming benefits. Firstly, how the heck would they see his private medical information? Secondly, when he denied, this, he pointed out that the fact he had been employed and paying tax and NI for 29 years appeared to have been mysteriously overlooked.