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The Big Care Debate – have your say
I was delighted by the publication of Shaping the Future of Care Together, the Green Paper on the reform of adult care and support in England.
The Green Paper sets out a vision for a new National Care Service. As we all know, more and more of us are living longer, and of course this is a great thing. However, the harsh reality is that the current care system, designed in the 1940s, is no longer fit to face the challenges of the 21st Century. We need to create a system that is, one that ensures that we all get really good care, wherever we live and whatever our needs.
This is a something that will affect all adults, people with a disability as well as older people, so it is something that we need to decide together. That is why we are launching the Big Care Debate.
During last year’s engagement process, people told us that they want a system that is, above all, fair, simple and affordable.
We need a fair system where people get the support they need wherever they are in the country.
We need a simple system where people know exactly what to expect and what they need to do to get help. Information and advice must be readily available to those who need it, when they need it.
We need a system that is affordable for everyone. Surveys tell us that more than half of people think that care will be free. But it’s not. Care and support costs can be very high: a 65 year old can expect to have to pay on average £30,000 for their care during retirement.
Many people will pay much less than this. Some people can live to be 90 and never need care, but many of us will also know people who develop a condition like Alzheimers and have to spend 8 or 10 years in a care home, which can cost hundreds of thousands of pounds.
The debate we need to have is about how we balance what it is fair for everyone to pay, against the need to protect people against having to pay a huge cost. These are big questions that we must answer together as a nation.
The Big Care Debate runs until the 13th November. There are many ways to get involved. Have a look around this website - you will see plenty of opportunities to have your say. Among them is a web-optimized version of the Green Paper where you can leave your comments, a stakeholder forum, and a toolkit for those who want to hold their own events. There will be details of events in your area, and look out for leaflets and postcards in public places, which offer you the chance to tell us what you think of the proposals in Shaping the Future of Care Together.
I urge you all to get involved in the Big Care Debate. This is a historic opportunity to help create something which could change the lives of people for generations to come.
Hello, well after reading through all these comments, I feel it only fair I add my experience.
I was born Disabled in 1957, due to the UNTEXTBOOK version of disability I have it makes it harder for me. I was first diagnosed with MD (Muscular Dystraphy) but after getting to 22 was told the diagnosis was wrong. As females die before they are 22 with MD. So the GP changed it to MS well again 10years later I was still alive only to be told the same again.
I was awarded Mobility Allowance as it was called back in the 70's when the INVALID CARRIAGES were withdrawn. Ok now having had the expereince of being taught to drive one, only FORWARD as the Driving Instructor was not qualified to teach me to drive in REVERSE, also they were not allowed to sit with you in the vehicle. As many of those whose drove these things will know. We were taught by word of mouth. Shock, horror when they were removed from us, as at least we were able to get about on our own and people knew the drivers of these had some physical infirmity or another.
Yet the Government decided to remove these from and replace it with a
Benefit, who set the Amount I will never know. But I am grateful, now my disabilty has another name SPINAL DYSRAPHISM, with CONGENITAL MALFORMATION OF THE SPINAL CORD, NEUROMYOPATHY. Also now I am an Amputee so my DLA now pays for my adaptions etc, my car, I have bought my car on finance well used DLA to pay for it. Now we hear these rumours that our Benefits are to be affected and given to others that WON'T HELP THOSE OF US WITH NON-TEXTBOOK DISABILITIES. I use a wheelchair when my Limb is not on and also because my walking is limited due to the disability.
My qualm is though that the MOBILITY CENTRE I attend as an Amputee they provided my wheelchair and Limbs. As the local Social Services will not provide me with aids. My vehicular access to the Council Home I live I had to pay for as I DON'T Qualify for any Grants due to the name of my Disability. I wonder how many other Disabled People in the UK are reading this and are in the same situation, with NON-TEXTBOOK DISABILITIES.
Yet somehow someone up in LONDON decides how much to give us each week in Benefit. We are grateful as we did not wish to be born Disabled, as many who have survived Car Accidents experience themselves. Luckily though they may get some form of Compensation, but I would still like to know who put the price on how much it costs someone who is not ABLEBODIED, to have some sort of normal life.
I am able to work but only PART-TIME due to the Disability. At the moment though I am off work with a Trapped Nerve in the Stump. I would normally pay for my Prescriptions and as I take over 15tablets per day this can be expensive. But the Back Pain Association in IRELAND send me an Exemption Certificate due to my Spinal Deformity.
Yet funnily enough the American Disability Unit send me a Disabled Placard FREE OF CHARGE for when I visit family. Yet in the UK I have to pay for a Badge, also have to PAY FOR PARKING, WHICH AGAIN IS LIMITED BY AN ABLE-BODIED PERSON WHO SAYS HOW LONG WE TAKE TO DO OUR SHOPPING. Even though they can walk, yet we are presented with Obstacles from the Moment we awake in the morning.
So I will be keeping a close eye on the developements and only hope that someone in Parliament has a HEART and helps those less fortunate through Disability to have an easier life, not PANICKING about trying to get Social Services to cater for us with our many needs, to live.
When we don't qualify for their help in any shape or form.
Michelle
i think that it is disgusting that scrapping dla my husband is blind
through no fault of his own and has had to retire at aged 48
due to diabetes i get carers allowance to look after him if they scrap
carers allowance then the nhs can look after him or perhaps mr brown or mr cameron himself
I posed a question in a blog by a worker for P R T C a charity for carers? I have had no response to this yet so I am posting it here.
Now how about an answer to a question posed about the Labour party conference?
1. Hi Gordon so how about an answer to this? Why did you not ask?
1.Did I work for a carers charity the first question that I would have put to any minister at the Labour Party conference would have been on the lines, “Is Carers Allowance safe from threat with the proposals in the green paper?”
Comment by webglynne | October 7, 2009 | Reply
Had I had a brain I would have added safe for carers now and for furure carers.
As you will see reading the above this was not the question this was a question asking why there had been no answer.
I asked about C A as a charity for carers should be looking to protect carers?
What ever happened to the concept if giving people control over their lives?
I have mobility problems, my son has an autism spectrum disorder. We both get DLA.
Our DLA is essential to the family income. It pays for a cleaner, ironing service, a new washing machine & tumble drier every 18 months, extra petrol, extra electricity, etc etc. We spend every penny on disability-related 'extras' that other people would not have to pay for.
It also means that our family is entitled to Working Tax credits. Without the DLA, we wouldn't get a disability credit for myself and my son & wouldn't be entitled to Tax Credits. This extra money enables me to work part-time since I'm in constant pain and cannot cope with full-time work.
Getting DLA means that I can and do work (& pay tax, NI etc). Isn't this what the Govt wants me to do?
Our government should feel deep shame. It seems that these days it is all about money. What happened to caring for people and thinking about their welfare. I know that the fiscal responsibilities of our country weigh heavy, but don't hit the poor and most vulnerable of us.
over the past 9 years I have suffered a deterioration of my health, asthma, vertigo, depression, arthritis nd now I'm borderline Diabetic. I try not to allow things to getting around but it's very hard and painful walking, writing etc.
Now it seems that I have to worry about my financial stae as well as everything else as the 'powers that be' have decided that they are going to yet again fix something that isn't broke and mess about with DLA.
It seems to me taht priorities are being misplaced, surely kicking those of us who are already down is not a worthwhile venture, but I also understand there are people who know how to work the system and claim what they are not entitled to, this needs to be addressed in a more fair way so that people who need help get it.
I have no hard or fast answers to the financial situation, I just know that there are people out there in pain, unable to walk, unable to do thinks for themselves, who already in some cases can feel worthless being now made to feel even worse by people in their shiney offices who just don't understand what we are going through and are just looking at saving money the easy way.
At least Robin Hood got it the right way round........
Data is powerful. It informs and it creates opportunities. It promotes transparency and it helps to ensure accountability. Yet, it is a challenge to collect, organize, and communicate the vast stores of data maintained across the government.
The Big Care Debate Conference
Park Plaza, London. 17th October 2009
A speaker at the conference justified the position of proposed removal of Attendance Allowance from some people’s pockets by drawing attention to those wealthy claimants who hoard the benefit cash ‘to pass on to their children’. She claimed to have been told this by someone at an earlier conference. The speaker didn’t feel it necessary to add that the miscreant had probably been paying tax for many years and felt it was her right to receive the benefit for good reason. I think that it is very poor for a government speaker to relay anecdotal evidence in the place of fact.
Later, a speaker (possibly the same one) told the conference that DLA would definitely not be removed from peoples’ pockets.
I had with me a letter from Jonathan Shaw MP, Minister for Disabled People, dated 29th September 09 in which he writes ‘we think there is a case for bringing some disability benefits and the adult social care system together into a single system’. Note the plural, ‘benefits’ which seems to indicate AA AND DLA.
I wanted to check this point at that part of the conference called ‘Q&A’ at the end of the event.
The conference was scheduled to end at 1.30pm and at 1.26 a speaker announced that there would not be the time for questions. (Special note: this meant that there were NO opportunities for questions put by attendees at any time during the event.) Ironically, there followed 12 minutes of final comments by the speaker!!
I put the issue of DLA to one of the speakers privately after the conference ended. She basically said that ‘Ministers aren’t speaking from the same songsheet as we are’. (my words but with exactly the same meaning). I was invited to ‘watch this space’ as definitive clarification would be given on this point within a week.
I also questioned why it was that at this conference the speaker addressed the unworkability of the tax funding option for ten minutes whilst at the Tonbridge event it was done in about a minute. The speaker told me that the conferences had changed quite a bit over the summer. Your telling me!
• open criticism of some AA claimants
• Anecdotal evidence in place of fact
• Definitive ‘DLA is safe’ announcement despite contrary correspondence from a minister
• NO questions from the floor and last but certainly not least,
• There has clearly been much feedback that many people see taxation, in some form, being a strong contender for funding social care
I would like to congratulate the organisers for providing excellent accessible material and PA support throughout the event.
End
My wife was diagnosed with Breast Cancer in 2005. Her Cancer is terminal. She later developed secondary Bone Cancer and Cancer of the liver. She was unable to walk unaided at first requiring crutches and then a wheelchair for a period of time. Her claims for DLA were rejected and a conversation with the Call Centre left her in tears and demoralised. She was told (very unsympathetically) by this Call Centre employee that she did not qualify for DLA. It was thanks to the efforts of Macmillan Cancer Support that she was later awarded the benefits to which she is legitimately entitled to.
Having experienced at first hand the way the machinery of government treats people, I have grave reservations concerning the " National Care Service " and the proposed abolition of some of these allowances. My wife was put through an unacceptable ordeal and I have absolutely no trust or faith in any Government changes to the Disability Benefits system. Not content with bleeding the ordinary working person dry, it's now time for this Government to penalise the Disabled apparently ?
At last you've got the DLV right by saying it will not be affected by the proposed legislation on care and support.
The arguments that appertain to DLV also apply to Attendance Allowance. To have that placed under the scrutiny of expensive local authoriy workers would be wrong and woud be a removal of the present benifits to AA recipients and thte extension of the public sector.
Wilf Austin
Here are the comments of the our District's Over-50s Federation's committee members:
a) Selling property to pay care costs: use only the interest from the capital to pay for care, rather than using up the capital.
b) Costings: much more detail is required before voting on the funding options. Whichever system is chosen, the money must be ring-fenced for care.
c) Publicity: the public needs to realise the seriousness of the current situation, and to be aware that care will cost them money.
d) Choice: of care providers and places of care is limited, no matter what the funding options. Reform and expansion of services is urgently required.
e) Changes of government: all parties need to unite on this issue.
f) Immigration: the Australian government requires a payment of £20,000 towards healthcare before an immigrant can be accepted to use the service. Reform in this area is needed in England for both health and social care.
g) Health needs versus care needs: re-integration needed. Distinctions are timewasting, confusing for users, costly and can lead to poor, or no, care.
h) Existing older people: whatever system is chosen, it should not disadvantage or penalise older people in need of care when it is implemented.
There is a certain irony here is there not that P R T C and CUK supported a call for an increase in C A from the owner of a hate site yet are strangely silent about the loss of Carers Allowance threatened in the green paper?
The debate lays out clearly what the issues are - interesting to find out if there is a way to find consensus and give everyone a fair deal - those with financial means and those without. It will be an achievement indeed if a balance can be found that results in a better service for all.
I look after my mum, which I have been doing since 1997, I was one of the millions of Carers who slipped through the net for a basic Care Package for mum, until about 5 years ago, when my health started to decline, I was assessed as a Carer, then 3 years ago, as WE can't talk to Social Services directly, we have to talk to CARELINE, which I think that is illegal in itself, as it's taking away control and direct services away from the CARERS themselves. I personally won't talk to CARELINE, as I find that they are intrusive on our personal lives, and does not deal with the help we need there and then, we have to wait at least 2 hours, or even the rest of the day, vulnerable people are at risk here, including CARERS. Personally I got talking to a Councillor, and he arranged me to have a Social Worker, but there is others who don't have that luxury. First of all SCRAP CARELINE.
How can you lot say that Carers Allowance and Income Support be some sort of compensation for loss of earnings, when the money we do get IS NOT anywhere near the minimum wage, and the price of living is at a record high?
I am at an all time low, when it comes to your so called benefits, because we have to pay to have respite, we have to pay for CARE in there own home, and we have to pay if we want to use public transport, I do think that we all should get some quirks out of this, like your MP'S, and the scandle over the duck house and bath plugs, ect.
It is a bit late if you want to give us more benefits, as stated by your MPS, about the big benefit shakeup, DON'T Destroy Carers Allowance and name it something else, DON'T Get RID OF INCOME SUPPORT, that's our lifeline of getting free medicines, and dental care.
We want more money now, and we want the MPs to realise that if the Carers walked out for 1 day a week, the whole Care system will collapse, especially Social Services. SECOND MORE MONEY for Carers pockets, not just public money.
Carers activity days should also be there when we want it, and Carers Centres for coffee days, and days out, with automatic arranged care for the Cared ones, if not, automatic day centres.
So Pull Your Sock Up Mr Prime Minister, we are worth out weight in gold.
DLA
Your DLA is safe, be happy!
In a recent statement from the Secretary of State for Health Andy Burnham said that the government has ruled out the possibility of integrating DLA into its proposed new social care system and wanted to close down the debate, as he put it, on the speculation surrounding this. Speculation, it has to be said, caused by a very ‘gray’ Green Paper on this issue.
The ‘your DLA is safe, be happy brigade’, were quick to announce his statement but should keep in mind that the Green Paper, although published by the Health Secretary, also contains implications for Benefits.
These benefits are the domain of the DWP. As mentioned in my blog here a few weeks ago, (please go there before reading on) I mention that I have a letter indicating that DLA is not safe. That letter is from Jonathan Shaw, Minister for Disabled People who writes under a ‘DWP’ letterhead.
Wo, hold on there… doesn’t that mean the letter comes from the DWP! Yes it does.
Duplicitous? At least, just keeping their options open! ‘Closing down the debate’? Perhaps the DWP could by making a similar statement as the Health Secretary.
I am dismayed at the approach which has rejected funding care services from general taxation but which wants to take Attendance Allowance from disabled pensioners. AA is a very efficient and effective direct payment. People use it in a variety of ways and it helps to maintain their independence. As well as triggering Carer's Allowance for a carer - where there is one who can claim - it triggers increased payments (in a variety of ways) on means-tested benefits in many cases. It is effectively a dual benefit, with the basic AA for those who are not claiming means-tested benefits and higher rates of income for those who are. Abolishing or means-testing AA will be a huge retrograde step for all those who receive it - or could at a future date - and who do not receive care services. My father received AA in the last couple of years of his life (in his 90's) and while my parents did not claim means-tested benefits it was a welcome addition to their income to help cover extra costs linked to his increasing frailty.
Studying this Green Paper as a Pensioner I strongly feel that this is not a consultaion. I like many others cannot understand why this cannot be financed by the Tax system - whichever way it is paid for everyone is going to have to pay more in one way or another. To suggest that the State could create its own insurance scheme! I have paid into the State insurance and Tax scheme all my life and now they want more - why should anyone trust a new scheme. I still want to know when this Care and Support takes place - at the moment you have to have Critical or Substantial needs to get anything? Quite frankly, the money spent on this so called consultation could be better spent on Care.
Funding domiciliary care, and getting rid of a lottery.
At present, anyone with assets of more than £23,000 must pay for domiciliary care. This costs £30.000 a year so the assets are quickly used. If we just die, without needing this care, the estate remains intact, unless it is more than £325,000 when inheritance tax kicks in. This lottery is a worry and is wrong. The thresholds for for paying for care and for inheritance tax should be made the same, getting rid of the lottery and at the same time providing funds for care.
It would be politically out of the question to reduce the 40% threshold below the present £325,000, but it is worth considering a 20% band below that. For example it could from £200,00 to £325,000. For a bequest at the top of this range the tax would be £25,000 which is only 7.7% of the bequest just received. This might be acceptable to the publici if it is specifically to be used for paying for domiciliary care, and it makes a worth while contrbution to it.
I don't have the data or the ability to estimate this, but it could be significant. There could be many bequests in the band. Only a small proportion of people go into domiciliary care - from memory only about one it six. Some of the cost of care would still be met be the individual's income. If the general iidea appeals, it should be studied.
The care debate is an important one and we applaud the consultation exercise. The only key point that we wish to register is that no system will work effectively unless it fully allows for on-going feed-back from those receiving care and their nearest relatives. We have found a major provider very unresponsive to complaints and concerns - full of avoidance strategies. This seems fairly typical - almost endemic. Care residents and relatives have suffered as a result. The inspection frame-work is weak with perhaps one inspector expected to fathom the ethos of a Home in just one day - and in some situations there are multiple problems. An on-going system of responsive evaluation that is taken seriously is vital whatever the national frame-work or funding method. We are happy to provide full details of our experiences if that would be helpful - and to suggest constructive solutions. Christopher and Christine Arnold.
1. Geoff Jelly says:
2 November 2009 at 8:09 am
DLA
Your DLA is safe, be happy!
In a recent statement from the Secretary of State for Health Andy Burnham said that the government has ruled out the possibility of integrating DLA into its proposed new social care system and wanted to close down the debate, as he put it, on the speculation surrounding this. Speculation, it has to be said, caused by a very ‘gray’ Green Paper on this issue.
The ‘your DLA is safe, be happy brigade’, were quick to announce his statement but should keep in mind that the Green Paper, although published by the Health Secretary, also contains implications for Benefits.
These benefits are the domain of the DWP. As mentioned in my blog here a few weeks ago, (please go there before reading on) I mention that I have a letter indicating that DLA is not safe. That letter is from Jonathan Shaw, Minister for Disabled People who writes under a ‘DWP’ letterhead.
Wo, hold on there… doesn’t that mean the letter comes from the DWP! Yes it does.
Duplicitous? At least, just keeping their options open! ‘Closing down the debate’? Perhaps the DWP could by making a similar statement as the Health Secretary
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Do read Gordons blogs! He is too polite to say he was lied to at the labour party conference but at best a smoke screen was well and truly put up.
http://carersblog.wordpress.com/2009/09/11/disability-benefits-where-does-the-care-and-support-green-paper-stand/#comment-129
Unfortunately I came upon this debate too late and have not read the green paper but I have read the comments left on this site. It appears to be all about how much money vulnerable people need to live on and how care of the elderly should be funded.
Firstly I would agree with one of the respondents who says that he/she has worked all their lives and paid into National Insurance.. 50 years in my case, which should actually entitle us to receive 'free' care and support for the five/ten years we might be in need.
Care... what care. God forbid that we should ever need it because in my experience there are very few people out there who actually care. We work all our lives, scrimping and saving to buy our homes to leave something for our children only to have it taken from us when we go into the ''CARE'' homes. We are nothing more than 'Geese laying the Golden Eggs'. Not only is our money taken from us but our pride and dignity. The only people benefitting from our plight are voluntary organisations (funded by whom?) set up to 'speak' for us; the 'home' owners, 'social workers' employed to support 'us', and all the many varied agencies set up to monitor the ''care homes.''
In these homes we get absolutely nothing but a bed - unless we pay an extortionate fee.... We are left to sit in a chair and rot in our own urine and feaceas. The food is rubbish and unappetising - but what can we expect when only 50p a day is allocated per person. Compare this to what criminals are allocated, for free.
When we are old we have no rights... regardless of what we are told, and how are we supposed to fight for our rights anyway, when we are old and infirm? Who are our champions and how much are they being paid?
I would dearly love to attend a proper debate where I would ask why can't the people setting themselves up as carers ''care?'' If they can't. If it is truly an impossibility then for God's sake intoroduce Euthanasia and put people out of their misery before they are neglacted, abused and and left to die in pain and misery, in my experience, with my dear Father in Law and my precious Mother, both of whom died in appalling circumstances, despite my very close attention; The only place either of them received any care was at home with me and in Intensive Care where I do beleive the nursing staff were angels, which sadly does not apply to general nurses who appear to be irritated by the elderly and whose primary concern I beleive is drawing their pay for doing as little as possible and having a chat to their friends; chatting on facebook and twittering. (I experienced this myself) What they fail to understand is that they very soon wlil be the elderly.
As stated by Christopher Arnold above; The inspection framework which receives massive funding; is weak and totaly ineffective; and as such, I beleive is aiding and abetting the neglect and abuse of the elderly. margaret p.