Tuesday, 24 November 2009

Charity Stays At Home.

Last weekend saw the culmination of the annual BBC charity bash better known as Children in Need. For me listening to BBC radio 2, particularly the breakfast show, all last week was an absolute nightmare. Don't get me wrong, I don't object to charitable giving and taking, there is nothing wrong with it at all, I just object to the fact that it has to be done.

In the 21st century we can spend impossible amounts of money sending young men and women to their deaths in foreign wars which a brief look in a history book should tell us cannot be won by anyone, yet we have to act like fools, sit in baths of beans, walk, run, skip or jump impossible distances to raise money for for what should be provided as a right.

I'm just getting this off of my chest, I don't expect anyone to agree and I do not mean any offense, this is just a personal view borne of experience and upbringing. As a child charity was putting money in a tin for Poppy Day, and getting a poppy pinned to your coat. There was another one my Mum always gave to which resulted in a little pink wild rose, I seem to remember it being called a Princess Alexandra Rose and had something to do with nurses but I could have that completely wrong.

Then there were the international appeals for famine relief that pre dated Oxfam. I think it must have been in China because I recall my Mum again, telling me how grateful I should be that I was eating more in one meal than a whole family had to eat in a day in China. I was a fussy eater up till then! As communication improved and the world got smaller we heard about disasters and famines and and got used to the little envelopes coming through the door to be filled for later collection, and soon it was 1985.

Band Aid, Bob Geldof's act of genius. Give people a spectacle and while you are at it remind them how lucky they are, how grateful they should be and how affluent they are compared to the poor people of Ethiopia. Exactly what my Mum did to me 15 years earlier about the poor Chinese. And our acts of benevolence have been 'feeding the world' ever since. I have absolutely no problem with this, helping those who can't help themselves because they are caught up in catastrophes so out of the ordinary in countries unable to cope with disasters, wars and the like is a truly humanitarian action. But what happens with Children in Need is another story.

Terry Wogan's auction for the things that money can't buy, Chris Evan's dine and disco auction on the radio during the week leading up to Friday nights television extravaganza make me cringe. I'll say again, this is personal, their intentions are admirable, the amount of money they raise is phenomenal, but the amounts of money being given by individuals from my point of view is almost obscene, how do so many people have such quantities of cash to give away? Rhetorical question, it's really none of my business, I'm happy that so many people have got so much money to give away, I wish I did! I can't bring myself to watch the television on the night, it is too painful and I can't can't take the emotional roller coaster, I find myself careering between sorrow and anger just thinking about it.

Sorrow and anger because all this broadcast time is raising money for children in need here in the UK, one of the more affluent counties on this planet, where individuals can afford to shell out tens of thousands of pounds to ride in a racing car or have a round of golf with someone famous. Most of the children in need in the UK are in need because of a medical condition, either of their own or of their parents or siblings. They are seriously disadvantaged by an unbalanced society. How does this happen in the 21st century? Another rhetorical question.

We've had a National Health Service for 60 odd years, we've had Social Services of one sort or another for almost as long I think, if you know better tell me, and now of course we have the wonderful Department of Work and Pensions. All three of those institutions are in a position to help, in fact are legally obliged to help and in most cases manage to do so as far as they can. But we are coming out of an enormous global banking cock up which apparently we will all be paying for for years to come so there are financial cuts in all areas. And yet there are still individuals with money to throw away, and we can still afford to wage war in counties we have no business being in.

Anyone who has read my blog before will know that I am a socialist at heart, I probably always will be, it was the way I was brought up. So I have no difficulty in saying that most of the money raised for children in need last week, and will continue to be raised for weeks to come, should really have been raised in taxes to go straight to the National Health Service and Social Services, because it seems to me that the charities and organisations which benefit from Children in Need are doing work that the health and social services should be undertaking themselves. That a charity has to pay for a break for a young carer in a country where a bankers bonus would probably buy that young carer a house is wrong. I am very sad to say we seem to be living in Thatchers dream of no society.

That's it, sorry if I offended anyone, it's just my opinion. I realise that most of the money will have come from ordinary people who are feeling the pinch but feel the need to give and are glad to do so, that is the best part of our nation. I just wish that there was no need for charity to care for children, and adults come to that, who should really be served by a well funded National Health Service, and a Social Services that can deliver a real social service.

Tuesday, 10 November 2009

Not So Easy To Silence

Figure this is the best way to pass on the quantity of information I received in the email you can see a copy of below. If you can do anything, do it soon, please. (copy and paste the .gov.uk links, just click on the others.)

Not so easy to silence

Benefits and Work

to me
show details 12:12 (5 hours ago)

You're not so easy to silence

Dear Irene,

With just a few days of consultation left now, Andy Burnham's attempt to 'close down . . . the debate and controversy over disability living allowance' seems to have been only a partial success.

As we explained in our last newsletter, Burnham gave an assurance that DLA for people aged under 65 was not going to form part of the funding for the National Care Service. Like many others, we pointed out that this means that DLA for people aged 65 and over, as well as AA, is still under threat. We urged people not to let this cunningly worded concession succeed in silencing them.

And you certainly didn't.

People have continued to sign the No 10 petition, which is now at number 6 on the Downing Street site with over 20,000 signatures.


And posts have continued to pour into the Big Care debate website which now has almost 3,400 submissions.


Many recent posts make it clear that you are aware that assurances have been give about DLA for people aged under 65, but you're still not happy.

In addition, following our revelations in a members only article on the site at the end of last month, many recent posts have been about the fact that the government proposes to send everyone a one-off £20,000 tax bill on their 65th birthday to help cover the cost of the proposed National Care Service.

More secrecy around National Care Service

The tax will be means-tested, so not everyone will have to pay the full amount. But it can be recovered from your estate after you die, if you own a home or other property. And the tax also won't cover the cost of food and accommodation if you have to go into residential care, only the care itself.

So, you still facing losing your disability benefits at age 65, you'll still get handed a £20,000 tax bill and yet, if you do have to go into residential care for two years, the green paper estimates that you will still have to pay half of the estimated £50,000 cost from your own pocket.

MPs were also not fooled into silence by Burnham's DLA announcement. In a debate on the proposals at the end of last month, Burnham was repeatedly questioned about whether DLA for people aged 65 and over would be used to fund the National Care Service. He repeatedly dodged answering the question.

Burnham refuses to answer DLA questions

Suspicions about the government's plans have been further fuelled by its refusal to publish promised details of how the new service will be funded.

More secrecy around National Care Service

A coalition of charities - the Care and Support Alliance - is now set to make a Freedom of Information request to try to obtain the information.

Unfortunately, there is at least one organisation which continues to claim that DLA is now safe. . . Disability Alliance. Until the end of last week their home page still proclaimed 'DLA no longer part of social care plans. See our press release.'

The link has now been removed from their home page, but the press release stating that ". . . the Disability Living Allowance (DLA) benefit will not be affected by Government plans to merge some benefits with social care funding" remains. So, Burnham may have succeeded in closing down the debate in one place at least.

For the rest of us, we still have until Friday to make our contribution to the Big Care debate and to sign the petition.

We'll be back next Tuesday with our final email of this campaign and information about how you can stay in touch with what happens next.

Good luck,

Steve Donnison

Please feel free to forward or publish this article.

Benefits and Work Publishing Ltd
Company registration No. 5962666

Finally, remember that you can post your news in the Benefits and Work forum, if you’re a member, at:


and/or in the free welfare watch forums at:


You can also keep up with news about opposition to the green paper at the Carer Watch campaign blog:


Unfortunately, we’re getting so many emails on this subject that we are unlikely to be able to respond individually. But we do appreciate hearing your news and views and we do encourage you to publish them for others to read on the forums detailed above.

Sunday, 1 November 2009

Welfare Benefits, Or How Hard Do I Have To Work To Deserve Them

If someone had told me 30 years ago that would be relying on welfare benefit to keep body and soul together I would not have believed it. In a civilized nation like ours I always assumed it possible to make a living, if you couldn't find a job you created one. I have been party to creating and selling two reasonably successful businesses and managed to keep my head above water without recourse to the state through all kinds of life's ups and downs. But then 30 years ago I didn't have kids, to be brutally honest, 30 years ago I had no intention of ever having kids.

I always considered myself way too self centered to be any sort of mother, and to be brutally honest again, I never got on with any of the kids that belonged to my friends and went into a blind panic if ever asked to 'watch them for a minute' I was totally confounded by the presentation of the 'latest addition' which had to be coo'ed over and told it looked just like some other member of the family, a resemblance I could never see, when the reality was a red, wrinkly, wriggly, smelly and squawking little thing wrapped in pink or blue to define gender. I could never remember their names, neither were their birthdays engraved on my memory and heaven forbid that one of the little blighters would prefix my name with Auntie! I'm an only child for Christs sakes, there is no way I can be anybodies Auntie!

So there I am in 1985, nice quiet little business just the two of us. Scraping a living together in a craft business, nothing big, just comfortable after the excesses of the 70's, and I find myself pregnant. D'oh! I was 34yrs old and on the pill! How the.... yes well, there you go, Ce la vie, as they say and you have options. Well no, not really, it's a new challenge lets go for it, we had to take this seriously, so we got married, to this day I don't know why, it made no difference at all, but that is another blog for another time.

First child born 19th December 1985 by emergency cesarean section, then wrapped in a pink hospital blanket with the word 'girl' woven in stripes across it, you remember the oddest things don't you, coming out of the anesthetic that blanket was the first thing I saw. Child placed in my arms, I began to focus properly on what was happening, she was looking at me, no, not just looking at me, but searching about in my eyes, I reciprocated, a primitive, even primeval moment, never to be repeated but changing everything. And all my childless friends receded into the shadows.

1987, back on the pill, one child is enough, especially as the one we had was showing distinct signs of being autistic, not that I can get anyone to take me seriously, but that is yet another blog for yet another time, and what do you know... pregnant again. Phoned my Mum with the good news, "Ha, I only had you, you're on your own kid." were her loving words of encouragement and I progressed through the pregnancy with every known form of indigestion and a predisposition towards grumpiness. Determined not to endure another cesarean section, second child born 26th April 1988 in the conventional manner with no serious medical interventions and no pain relief. Another girl, good, not fond of little boys, this one didn't do the primeval soul searching look, this one just looked me straight in the eye and started bawling. I was ecstatically happy when the whole messy business was over, a month later husband had a vasectomy since the pill was proving unreliable, and two children was definitely enough!

Since we had our own business in those days inevitably I worked right up to the last minute with both pregnancies, and was back at some sort of work within a month, and we managed to keep the business running until it became obvious that first child, Sarah was not going to be able to attend and infant school near where we lived and if we stayed where we were the only option would have been a residential school many miles away, since it was clear her autism was severe we decided that sending her away from home at such a young age was not going to happen, we would have lost her had we gone along with that idea. Nothing for it, we had to relocate.

Which is how we ended up in the Cynon Valley, which like all people who have never come across it before, we innocently pronounced Sign On Valley, which we were soon to discover is what you do in the Cynon Valley, not the way you pronounce it. Here is the way the dictionary says it should be pronounced...
cynon is pronounced as k uh n uh n where,
kis pronounced as
kin key
uhis pronounced as
uin up
nis pronounced as
nin no
uhis pronounced as
uin up
nis pronounced as
nin no
It is really important that you know how to pronounce the name of the place you live in, people who have lived there all there lives really appreciate it! It was one of the most impoverished regions in Europe when we moved here, and was picking up European Union grants and subsidies left, right and centre in an effort to improve, but that is another blog etc. Our business couldn't take the strain of the move, being swindled, bloody Maggie Thatcher and an increasingly difficult 5yr old child who didn't seem to need sleep or food and whose whole vocabulary consisted of one word.. "No". We inevitably went under.

Because Sarah had special needs we had plenty of help from Social Services, As far as children's services go, I cannot fault the Rhondda Cynon Taff council. They have been brilliant with Sarah all through her school life, from 5 right up to 18, 1st couple of years in an observation unit in an ordinary primary school, and then in the local and quite excellent Maesgwyn Special School, which I can never praise highly enough for the care they took over Sarah's education. Sarah managed two years in a special unit within the local college before education was over and Adult services took over, transition is tricky and needs to be handled with care, but that is another blog, actually it is more than a blog, its a hand book, I'll come back to it sometime.

I digress, all the while the kids are at school and because of Sarah's special needs, as a family we were well served by Social Services, and were regularly visited by the welfare benefits department to make sure we were receiving as much help as was available, financial and otherwise. But the girls are no longer children. Hannah has sensibly stayed on in Bath after University, and Sarah will be 24 in December, and as far as we are concerned as a family, looking after Sarah now is harder and more expensive than it was when she was a child, she still doesn't always sleep, and now we have to stop her from eating as opposed to encouraging her to eat, in fact, you could describe her as high maintenance. She is very expensive to run! Sarah is our work, we spend hours arranging things for her, fixing the things she breaks because we cannot afford to replace stuff as frequently as we would like. Sarah is a bit clumsy, so stuff gets dropped or just not used properly and consequently just breaks down, CD's and CD players are doomed as soon as they enter her room, we tend to make a lot of copies and I really have lost count of the number of CD players she has destroyed, three so far this year. Ebay has been a godsend!

So, getting back to welfare benefits, Sarah gets what is due to her, she will never be able to work for a living and unless a miracle happens, she will always be dependent upon the state. I hate that though but there is nothing I can do about it. So while we can, we do what we can for her, and in the process of caring for Sarah for all these years we have put our own lives aside, after all this time both myself and my husband are probably unemployable, we are both in our late 50s, both beginning to feel worn out physically and mentally by the consequences of Sarah's severe autism. We get income support at £77.35 per week to make up the shortfall in the legal minimum amount needed for two people to live each week, the other part being carers allowance of £53.10 per week. We can manage on that, we don't run a car, we never go out as a couple for a meal or to the pub and I honestly cannot remember the last holiday we had, but it was more than 10 years ago. But we are on duty every minute that Sarah is with us. granted she is at the day centre three to four days a week, that amounts to a maximum of 28 hours a week at the day centre, she also gets another 6 hours out with social care workers, but that doesn't always happen.

Lets do the sums, there are 168 hours in a week, up to 34 of these hours Sarah is being cared for by social services so that leaves 134 hours for us to care for her. That means the carers allowance is being paid at a rate of £o.39 per hour (for the two of us). Under the new fairer charging system for social care for those living at home, the local council is currently expecting Sarah to pay £75.00 per week for those 34 hours, very reasonable at 2.20 per hour (if she were to use all those hours up!), trouble is, once she has paid her £75.00 per week as a household with all the usual bills to pay, we are going to have serious problems making ends meet. Of necessity, Sarah pays her share.

You don't hear much about the poverty trap these days, but let me tell you, down here at the bottom end of the welfare benefit handouts, we are in a nasty sharp poverty trap. We have no savings, we have a mortgage to pay, we still have to pay all the usual bills, council tax, water, gas and electric, once these are paid and the other little essentials like telephone, TV, broadband, food etc., so not much left at the end of the month to put towards setting up another business, which is what we would ideally do, because we have to consider what the hell we are going to do if say, the washing machine dies, or, heaven forbid, Sarah's TV finally throws in the towel, and she'll be needing a new bed soon and mattress, these things don't come cheap and we cannot afford them.

I no longer laugh at the make do and mend policy of my parents time, and how I regret the extravagances of our pre children days. In the 70's I worked hard and played hard, I've got nothing to show for it, just memories and the knowledge of the experience, looking back though, I realize now that I did work very hard indeed, almost always a seven day week, but working for yourself meant that if you wanted time off you could arrange it properly and have really good and worthwhile time off. The only difference now is I work seven days a week for 39p an hour, have to claim welfare benefits to get by and can no longer afford time off.

That it, rant over and with any luck, when the postal strike is over I will get a letter from the council telling me that they got it wrong and by using the calculations they identified in their own guidelines to fairer charging, they will see that they should only be charging Sarah £2.50 a week at the most and that £75.00 is pushing their luck! If they insist on that amount I shall be asking for a similar amount (£2.20 an hour) which would bring in £294.80 a week before tax and insurance of course, that's about £15 grand a year. That would do us, it is twice as much as we get at the moment if you include income support, and maybe we could have some recognition of how bloody hard we work for the pittance they seem to think we deserve. Not much chance of that happening! It would cost social services a whole lot more if we decided we could no longer cope and we're handing over responsibility to them, but of course they know that isn't going to happen either.

I'm leaving it there, rant really is over, as far as writing it down goes, it will continue to rumble about in my head for some time though. I'm going to shut up now....