This is a guest post from @Spoonydoc and originally appeared here.
Many disabled people are currently living in fear since the welfare reform bill became law. Some benefits are due to be replaced with stringent new criteria which mean that many disabled people will no longer qualify for support. With social services cutbacks many will be left with no help whatsoever.
I am not quite in that position. I am among what the government likes to call "the most vulnerable". Currently in receipt of the highest levels of disability benefits and having easily passed the new dreaded draconian Work Capability Assessment I am in the support group of what is called ESA and am not expected to be able to work again. Having seen the criteria for the new benefits it is clear that even being as harsh as possible, I should easily qualify for the highest rates of these too.
With the government having promised that the reforms will see more support diverted to the "most vulnerable in our society", you would therefore think I have nothing to fear.
You couldn't be more wrong.
I currently live independently.
As I live alone I receive an extra payment called SDP (severe disability payment) which helps cover the extra costs of care and disability.
However a large portion of this and my other benefits goes to social services and in return I receive direct payments, money with which I employ carers to help me with every day tasks such as getting dressed, washed, eating, shopping, etc.
My LHA (Local Housing Allowance) is upgraded to a 2 bedroom rate so that carers or family can stay when my illness is so bad that someone needs to stay overnight.
My flat was adapted 8 years ago so that it is wheelchair friendly.
When the changes start coming in next year, all this will go.
a) SDP is being abolished completely.
b) The 2 bedroom allowance is no longer guaranteed.
c) I will continue to have to pay most of my benefits towards my care. I cannot manage without it.
I calculate that I will be around £80 per week worse off (around half from SDP and half from LHA).
At first I might be ok. Apparently there will be a transitional protection as far as SDP goes, which means I will only be £40 worse off and might be able to get that together somehow. As time goes on however, that will be eroded by inflation and benefit freezes.
The second big issue is : I cannot manage without a second bedroom.
Even if I could, there are no wheelchair friendly 1 bedroom flats available for rent privately (I've been looking). As far as social housing goes there is little wheelchair accessible housing available and in any case I am not allowed a bungalow until I am 50, ie in 17 years time!
So I either have to go into non wheelchair accessible accommodation without provision for my carer or go bankrupt!
The only other solution is for me to go into a care home at the ripe old age of 35. Ironically this will cost far more than if I were to stay put and continued to be paid benefits.
Before the election David Cameron said "If you are sick, disabled, frail, vulnerable, or the poorest in society you have nothing to fear."
Sir, please look me in the eye and say that now.
Campaigning against the government's distressing war on disabled benefit claimants. All posts represent the opinions of their respective authors and not WtB as a whole.
Showing posts with label care packages. Show all posts
Showing posts with label care packages. Show all posts
Tuesday, 10 April 2012
Thursday, 7 July 2011
When the dignity of one person is denied, all of us are denied
Disabled people in the UK have been under constant attack lately. Whether it's the vast and wide-ranging benefit cuts; Birmingham city council refusing care to people with substantial needs, which has since been ruled unlawful; cuts in Access to Work, ironically when we are being told we should all be getting jobs; or the impending closure of the Independent Living Fund, the hits feel like they are coming from every direction.
But I read about a case a few days ago, Court tells disabled woman: just wet yourself, and it showed me just how government cuts are affecting real people. It is not an 'austerity measure', nor is it 'small government', it is an affront to a woman's dignity and human rights, and we should all be utterly outraged.
Elaine McDonald has just lost a Supreme Court fight for her local council to allow her to continue to have overnight care. Funding was withdrawn by the Royal Borough of Kensington and Chelsea for the overnight care that Ms McDonald needs to assist her with going to the toilet during the night, and the council instead gave her some incontinence pads, stating that this was cheaper.
Elaine McDonald is not incontinent! And she, quite rightly, objects to being asked to lie in bed for 12 hours at a time (since her care has been cut), in her own waste. She needs to go to the toilet regularly due to a bladder dysfunction, and complained that providing pads instead of care caused a lack of dignity and independence.
Can you imagine if you were at work and your boss stated that bathroom breaks were wasting time and money, and that it would be cheaper for the company to provide everyone with incontinence pads instead? If you weren't on an authorised break then you could just use the pad instead, and sit in it until you were permitted to go? And Elaine McDonald is in her own home - of course, moving to a care home instead would cost the council considerably more.
Even in purely economic terms this is a questionable decision. The lack of mobility which she will now experience, and the potential infections from spending night after night in your own faeces and urine, could cause significantly worsened health and social problems, which would increase the cost of her care significantly. And some people in Ms McDonald's situation may try to go to the bathroom or commode regardless, risking increased falls and, thus, increased health and social care costs again.
But the Supreme Court judges ruled 4-1 that the council had acted lawfully. Judge Lady Hale, the sole judge to rule in Ms McDonald's favour, stated that,
"A person in her situation needs this help during the day as well as during the night and irrespective of whether she needs to urinate or to defecate.
"Logically, the decision of the majority in this case would entitle a local authority to withdraw this help even though the client needed to defecate during the night and thus might be left lying in her faeces until the carers came in the morning.
"Indeed, the majority view would also entitle an authority to withdraw this help during the day."
Of course, incontinent pads in themselves are not bad things. For people who are incontinent, they are invaluable. But Elaine McDonald does not need them and does not want to use them. Nobody should be put in this position, and she was right to challenge it legally. The depressing truth is that the council and courts rated costs over human dignity, and Ms McDonald could be the first victim of many.
And it seems that she is not the only person being challenged on their use of a toilet to save money. According to The Scotsman, "disabled residents at a supported-housing complex have been told to train themselves to go to the toilet at fixed times to fit in with a strict new rota". Is this where the infamous Big Society comes in? You can run libraries, or you can assist disabled people to go to the toilet. Because after all, those who should be providing those services will not bother.
[The image is a photograph of a hand, holding a piece of paper on which is printed, "The budget is killing me!". The photograph is adapted from an original, licensed under a Creative Commons licence, by Steve Rhodes.]
Wednesday, 6 July 2011
Guest post: Court tells disabled woman: just wet yourself
This is a guest post by Indigo Jo and originally appeared here.
Ex-ballerina Elaine McDonald care ruling ‘shameful’(with video)
I wasn’t aware of this case until I read earlier today that the Supreme Court had refused it: Elaine McDonald, a 68-year-old former ballerina who lives in west London, who had been left disabled by a stroke in 1999, had been challenging the decision by her local council (Kensington & Chelsea) to cease to provide night care in case she needed to use the toilet, providing her with incontinence pads instead. She is not incontinent. (More: Where’s the Benefit?, Disabled People Against Cuts.)
Hearing about this, I cannot help but think that whoever made the rules could not have imagined that decision-makers would even consider telling a person who is not incontinent to just wet themselves but Michael Mandelstam, in his recent book How We Treat the Sick (the link is to Amazon UK, as it’s about the British health system), it’s become sadly common in some places for nurses to tell patients who cannot get up to use the toilet to simply do it in bed. On reading this I sent out a tweet saying I couldn’t believe any nurse would tell a patient to wet the bed rather than attend to them, and was told (by a disabled woman who had seen the inside of hospitals on several occasions, as had several of her friends) that this was nothing compared to what she had seen and heard about. As one might expect, Ms McDonald said she was horrified at the original decision and found today’s court decision very upsetting, while another Supreme Court judge noted that it would enable authorities to deny people care related to toileting during the day as well.
Of course, some disabled people are incontinent, and providing incontinence pads is a perfectly proper and necessary form of care for them, but some say it’s the worst aspect of being disabled — I read an article about Judy Mozersky, a woman who became “locked in” after suffering a brain-stem stroke while at college, and when asked what was the worst aspect of her condition, that was the one she named. That they would ask a continent person to lie in their own urine and faeces for hours demonstrates that they have no idea of what that means. It is particularly distressing for an elderly person who has lost much of their independence but not that, or for a child who has fairly recently become continent. I recall how distressed I was when expected to put a plastic sheet on my bed when starting at boarding school, not having had such a thing at home and not having wet the bed for four years. And it has been noted that some people who are not incontinent find it impossible to pass urine into a pad (E. Collingridge, 2010), and that in such circumstances, a catheter might be appropriate. This could result in prolonged discomfort (or possible medical repercussions) and sleep problems.
I do hope this does not result in the needs of elderly disabled people being pitted against those of younger people with disabilities; the needs of the elderly are a media-friendly issue, as they can be portrayed in the popular press as people who have paid taxes all their life and then left to sit in their own urine by the uncaring professionals, bureaucrats or whoever, which is not so easy with younger disabled people. The judgement, like the original care decision, is clearly based on ignorance of the consequences for Ms McDonald’s health and that of all those who might be affected, including the more severe hygiene requirements to prevent skin breakdown and infection. Surely, political intervention is vital.
Ex-ballerina Elaine McDonald care ruling ‘shameful’(with video)
I wasn’t aware of this case until I read earlier today that the Supreme Court had refused it: Elaine McDonald, a 68-year-old former ballerina who lives in west London, who had been left disabled by a stroke in 1999, had been challenging the decision by her local council (Kensington & Chelsea) to cease to provide night care in case she needed to use the toilet, providing her with incontinence pads instead. She is not incontinent. (More: Where’s the Benefit?, Disabled People Against Cuts.)
Hearing about this, I cannot help but think that whoever made the rules could not have imagined that decision-makers would even consider telling a person who is not incontinent to just wet themselves but Michael Mandelstam, in his recent book How We Treat the Sick (the link is to Amazon UK, as it’s about the British health system), it’s become sadly common in some places for nurses to tell patients who cannot get up to use the toilet to simply do it in bed. On reading this I sent out a tweet saying I couldn’t believe any nurse would tell a patient to wet the bed rather than attend to them, and was told (by a disabled woman who had seen the inside of hospitals on several occasions, as had several of her friends) that this was nothing compared to what she had seen and heard about. As one might expect, Ms McDonald said she was horrified at the original decision and found today’s court decision very upsetting, while another Supreme Court judge noted that it would enable authorities to deny people care related to toileting during the day as well.
Of course, some disabled people are incontinent, and providing incontinence pads is a perfectly proper and necessary form of care for them, but some say it’s the worst aspect of being disabled — I read an article about Judy Mozersky, a woman who became “locked in” after suffering a brain-stem stroke while at college, and when asked what was the worst aspect of her condition, that was the one she named. That they would ask a continent person to lie in their own urine and faeces for hours demonstrates that they have no idea of what that means. It is particularly distressing for an elderly person who has lost much of their independence but not that, or for a child who has fairly recently become continent. I recall how distressed I was when expected to put a plastic sheet on my bed when starting at boarding school, not having had such a thing at home and not having wet the bed for four years. And it has been noted that some people who are not incontinent find it impossible to pass urine into a pad (E. Collingridge, 2010), and that in such circumstances, a catheter might be appropriate. This could result in prolonged discomfort (or possible medical repercussions) and sleep problems.
I do hope this does not result in the needs of elderly disabled people being pitted against those of younger people with disabilities; the needs of the elderly are a media-friendly issue, as they can be portrayed in the popular press as people who have paid taxes all their life and then left to sit in their own urine by the uncaring professionals, bureaucrats or whoever, which is not so easy with younger disabled people. The judgement, like the original care decision, is clearly based on ignorance of the consequences for Ms McDonald’s health and that of all those who might be affected, including the more severe hygiene requirements to prevent skin breakdown and infection. Surely, political intervention is vital.
Sunday, 1 May 2011
#badd2011 Vulnerability
The government keep banging on about how benefit reforms will still see the "most vulnerable" supported.
But what do they mean by "vulnerable"? Innately I don't think of myself as vulnerable, I'm confident and articulate enough to stand up for myself (metaphorically at least). Despite my brittle bones I've stepped into the middle of a physical fight to break it up on many an occasion because I felt the benefits of doing so outweighed any "vulnerability" on my part. (And for the record it's never resulted in me getting punched. Something about people not wanting to hit a speccy disabled girl.)
But this government, with their cuts and their propaganda, are making me vulnerable.
Is this disablism though? Abso-bleeding-lutely when so many of the cuts and so much of the hate is aimed at us.
I'm vulnerable because I'm facing a future with no income because the DWP keep deciding ill people are allegedly "fit for work". If I end up losing everything how can I go on living? Other disabled people have already killed themselves because they lost their income. I'm not suicidal at the moment, I have no reason to be. But I'm vulnerable to finding myself suicidal in the near future because of the government.
Lets imagine I do get to keep my income replacement benefit (currently IB, soon to be ESA) and housing benefit. I'm still at risk of losing my Disability Living Allowance. DLA is a benefit paid to cover some of the extra costs of being disabled. Without my DLA I won't be able to shop to get food in. I currently have a Motability car, which I will lose if I'm one of the 1 in 5 DLA claimants who'll lose their money. I know some people who don't/can't drive who use their DLA to pay for online supermarket deliveries, without my DLA that'll be out of my price range. So I'm vulnerable to, you know, starvation thanks to the government's disablist cuts.
Then there's care funding. At the moment I don't get direct payments. I've toyed with the idea of applying but because there's so much paperwork involved it's less work to just struggle with domestic tasks myself and then guzzle painkillers in a House-esque fashion afterwards. As I smash up more joints that balance will change and I'll eventually pass the tipping point where the paperwork will become the easier of the two options. I used to live in one of the few local authorities in the country that provided care packages for people assessed as having less than "substantial" needs. Not any more. It's one of the things that got cut in my local council's budget this year. So if I sustain an injury (likely what with having brittle bones) I'm vulnerable to getting completely stuck and being unable to manage simple things like cooking because the council won't give me any assistance.
Thanks to the propaganda we see daily in papers like the Daily Mail and Express - encouraged by the government with their "scrounger" rhetoric and DWP press releases filled with half truths - I'm now more vulnerable to hate crime and being falsely accused of benefit fraud.
These brutal, unnecessary, unfair and disablist cuts are creating a raft of vulnerable people like me. People who are only vulnerable because of this government's actions.
If they truly cared about protecting us they wouldn't have put us in this position in the first place.
But what do they mean by "vulnerable"? Innately I don't think of myself as vulnerable, I'm confident and articulate enough to stand up for myself (metaphorically at least). Despite my brittle bones I've stepped into the middle of a physical fight to break it up on many an occasion because I felt the benefits of doing so outweighed any "vulnerability" on my part. (And for the record it's never resulted in me getting punched. Something about people not wanting to hit a speccy disabled girl.)
But this government, with their cuts and their propaganda, are making me vulnerable.
Is this disablism though? Abso-bleeding-lutely when so many of the cuts and so much of the hate is aimed at us.
I'm vulnerable because I'm facing a future with no income because the DWP keep deciding ill people are allegedly "fit for work". If I end up losing everything how can I go on living? Other disabled people have already killed themselves because they lost their income. I'm not suicidal at the moment, I have no reason to be. But I'm vulnerable to finding myself suicidal in the near future because of the government.
Lets imagine I do get to keep my income replacement benefit (currently IB, soon to be ESA) and housing benefit. I'm still at risk of losing my Disability Living Allowance. DLA is a benefit paid to cover some of the extra costs of being disabled. Without my DLA I won't be able to shop to get food in. I currently have a Motability car, which I will lose if I'm one of the 1 in 5 DLA claimants who'll lose their money. I know some people who don't/can't drive who use their DLA to pay for online supermarket deliveries, without my DLA that'll be out of my price range. So I'm vulnerable to, you know, starvation thanks to the government's disablist cuts.
Then there's care funding. At the moment I don't get direct payments. I've toyed with the idea of applying but because there's so much paperwork involved it's less work to just struggle with domestic tasks myself and then guzzle painkillers in a House-esque fashion afterwards. As I smash up more joints that balance will change and I'll eventually pass the tipping point where the paperwork will become the easier of the two options. I used to live in one of the few local authorities in the country that provided care packages for people assessed as having less than "substantial" needs. Not any more. It's one of the things that got cut in my local council's budget this year. So if I sustain an injury (likely what with having brittle bones) I'm vulnerable to getting completely stuck and being unable to manage simple things like cooking because the council won't give me any assistance.
Thanks to the propaganda we see daily in papers like the Daily Mail and Express - encouraged by the government with their "scrounger" rhetoric and DWP press releases filled with half truths - I'm now more vulnerable to hate crime and being falsely accused of benefit fraud.
These brutal, unnecessary, unfair and disablist cuts are creating a raft of vulnerable people like me. People who are only vulnerable because of this government's actions.
If they truly cared about protecting us they wouldn't have put us in this position in the first place.
Saturday, 22 January 2011
Whose care is it anyway?
Like most of the country, the Riven and Celyn Vincent case has taken up a considerable amount of space in my brain this week. Thing is, I seem to be concerned with very different elements of the case to the majority of the population.
The press coverage of the story has weighed quite heavily on my mind. Most news outlets are referring to it as the "Riven Vincent case." Celyn, the disabled person in need of a care package, doesn't usually get a name check until paragraph three; as though she's an unimportant afterthought in the story. In fact I'd bet that the majority of people who've seen/read the story probably don't even remember Celyn's name, only that of her mother. Sure the articles all come with a photo of her so people might remember that she's an absolutely beautiful girl with adorable ginger curly hair, but the photos are captioned "Riven Vincent's daughter" rather than "Celyn Vincent".
There are thousands of disabled people in the UK, both children and adults, with inadequate assistance packages. No-one wants to hear those stories. It's only when a non-disabled mother reaches snapping point that it's national news. It reminds me of how the story of Francecca Hardwick and her mum is usually referred to as the "Fiona Pilkington case". Disablist hate crime has killed many, many people over the years and none of those stories have come to the forefront of public consciousness. So why did that case? My theory is that, for the first time, disablist hate crime was responsible for the death of a non-disabled person.
And so it is with Celyn and her mum. Disabled people up and down the country are forced to sit in a puddle of their own piss for the best part of a day until their carer comes in for 15 minutes at bedtime to help them change; and inadequate social care is not a national scandal. A mother reaches snapping point and people are, rightfully, horrified.
One of my friends said "But at least there's a story involving social care cuts that the public is getting behind. It's something, and a step forward." I, however, wonder if it is a step forward or if the story is actually going to prove advantageous for disabled children and their parents at the expense of the social care of disabled adults.
I'm not for a second suggesting that support for disabled children should go out the window in favour of support for disabled adults. Not only do I think that everyone should have their support needs met, but once upon a time I was a disabled child myself so I understand that in some respects a disabled child's social care needs can be more complex and costly than those of an adult. A really good example is wheelchair provision; as a child I needed new wheelchairs much more frequently than I do now because I was growing.
I think there's a very real risk that with so much attention being directed at children's social care packages at the moment that more cuts will be aimed at adult services to preserve the funding for assistance of children and their parents.
David Cameron said that "he did not believe the case was connected to public service cuts." And as the Vincents have always had 6 hours a week assistance and that hasn't gone down, he was probably telling the truth. But if he wants disabled children and their families to have more help while his buddy Osborne is cutting local authority budgets, where is that money for the extra help going to come from if the money isn't being taken from adult social care to pay for child social care?
We have to remember that in the run up to the election Cameron kept on saying that he wanted life to be simpler for the parents of disabled children. He never, ever, even once, expressed any interest in or concern for disabled people over the age of 16. So I really don't think I'm just being cynical when I expect him to hang disabled adults out to dry.
I really hope Celyn Vincent gets a care package that will allow her to be an equal in her family, rather than just a stressor. I want to see all disabled children get the assistance they need to be a "normal" part of family life. I want to see all disabled parents have the help they need for their child to not be a carer. I want elderly people to not have to sit in their own incontinence for 12 hours. I'd quite like someone to help me with the more painful aspects of housework rather than having to look at my filthy floor wondering how much longer I can get away with not hoovering. I'd also very much like to be proved wrong and for the current focus on children's care to not have the end result of making life harder for over 16s.
The press coverage of the story has weighed quite heavily on my mind. Most news outlets are referring to it as the "Riven Vincent case." Celyn, the disabled person in need of a care package, doesn't usually get a name check until paragraph three; as though she's an unimportant afterthought in the story. In fact I'd bet that the majority of people who've seen/read the story probably don't even remember Celyn's name, only that of her mother. Sure the articles all come with a photo of her so people might remember that she's an absolutely beautiful girl with adorable ginger curly hair, but the photos are captioned "Riven Vincent's daughter" rather than "Celyn Vincent".
There are thousands of disabled people in the UK, both children and adults, with inadequate assistance packages. No-one wants to hear those stories. It's only when a non-disabled mother reaches snapping point that it's national news. It reminds me of how the story of Francecca Hardwick and her mum is usually referred to as the "Fiona Pilkington case". Disablist hate crime has killed many, many people over the years and none of those stories have come to the forefront of public consciousness. So why did that case? My theory is that, for the first time, disablist hate crime was responsible for the death of a non-disabled person.
And so it is with Celyn and her mum. Disabled people up and down the country are forced to sit in a puddle of their own piss for the best part of a day until their carer comes in for 15 minutes at bedtime to help them change; and inadequate social care is not a national scandal. A mother reaches snapping point and people are, rightfully, horrified.
One of my friends said "But at least there's a story involving social care cuts that the public is getting behind. It's something, and a step forward." I, however, wonder if it is a step forward or if the story is actually going to prove advantageous for disabled children and their parents at the expense of the social care of disabled adults.
I'm not for a second suggesting that support for disabled children should go out the window in favour of support for disabled adults. Not only do I think that everyone should have their support needs met, but once upon a time I was a disabled child myself so I understand that in some respects a disabled child's social care needs can be more complex and costly than those of an adult. A really good example is wheelchair provision; as a child I needed new wheelchairs much more frequently than I do now because I was growing.
I think there's a very real risk that with so much attention being directed at children's social care packages at the moment that more cuts will be aimed at adult services to preserve the funding for assistance of children and their parents.
David Cameron said that "he did not believe the case was connected to public service cuts." And as the Vincents have always had 6 hours a week assistance and that hasn't gone down, he was probably telling the truth. But if he wants disabled children and their families to have more help while his buddy Osborne is cutting local authority budgets, where is that money for the extra help going to come from if the money isn't being taken from adult social care to pay for child social care?
We have to remember that in the run up to the election Cameron kept on saying that he wanted life to be simpler for the parents of disabled children. He never, ever, even once, expressed any interest in or concern for disabled people over the age of 16. So I really don't think I'm just being cynical when I expect him to hang disabled adults out to dry.
I really hope Celyn Vincent gets a care package that will allow her to be an equal in her family, rather than just a stressor. I want to see all disabled children get the assistance they need to be a "normal" part of family life. I want to see all disabled parents have the help they need for their child to not be a carer. I want elderly people to not have to sit in their own incontinence for 12 hours. I'd quite like someone to help me with the more painful aspects of housework rather than having to look at my filthy floor wondering how much longer I can get away with not hoovering. I'd also very much like to be proved wrong and for the current focus on children's care to not have the end result of making life harder for over 16s.
Thursday, 20 January 2011
The Cost of Care - (Riven and Celyn Vincent case)
Celyn Vincent is a six year old girl with quadriplegic cerebral palsy and epilepsy. She requires round the clock care from her mother, Riven. Six hours of respite care is provided per week by social services. Yesterday, Riven Vincent asked for Celyn to be taken into care as her request for additional respite had been declined and she felt unable to cope. As yet, Celyn has not been taken into care, discussions are still on going as to the best way forward.
Riven Vincent is a user of Mumsnet and had David Cameron to tea pre election. During this visit he assured her that more would be done to support families with disabled children. A promise he is now being accused of breaking.
The statement released by Ms Vincent can be viewed here.
Carers are estimated to save the government in the region of £80 Billion every single year. Riven Vincent has estimated that the cost of caring for Celyn in residential care would be between £2000 and £3000 a week. The cost of a respite carer for Celyn is approximately £15 per hour according to Ms Vincent. It is likely that Ms Vincent is in receipt of Carers Allowance at a rate of £53 a week. Financially the provision of additional respite is obviously more cost effective. It will also have many other benefits for Celyn and her family which can't be measured. Time as a family, the ability to make memories. For Celyn's brothers and sisters to spend time with their mum. And for Ms Vincent to have time to rest and recover.
The fact that there is now a lot of attention on the issue of support for carers and the valuable work they do is great. However this isn't a one time only thing. Nor is it new. For many years now families have been expected to care for their disabled children (even when they become disabled adults) with little or no support for years. The planned cuts to disability benefits and services are likely to make this much worse meaning even more carers find themselves in this situation.
Personally I was refused all support when I left university as I was living with my parents (in a property they had moved to whilst I was at uni and which wasn't adapted) and we "could cope". The fact my Mum was working full time and also caring for my elderly Nanny (and my Dad had just had spinal surgery) and saying she couldn't cope was irrelevant. We were told we simply needed to "pull together as a family." This situation was only resolved because my parents refused to have me in the house and I was made homeless. That's a very distressing and painful procedure.
I know of other disabled people who have had to go down that route. Of a 40 year old who was given a suitable flat to live in but couldn't move from his parents house as no care was available. And of parents of now adult disabled children who have had to accept there child is never going to leave home and they'll have to keep trying to cope as best they can. Twitter is full of similar stories today.
The focus on care provision needs to move from the cost of it financially. It needs to look at the bigger picture. The question shouldn't be "can we afford to provide X service" but "can we afford not to?"
The fact that Celyn Vincent's family have found themselves in this situation has been described as "shameful". The fact that hundreds and thousands of carers and disabled people are in the same situation is even more shocking. I hope that Riven Vincent's brave decision to go public gets results for her and she can keep Celyn at home. But mostly that this brings the issue into the public eye more and that reforms are made to provide much needed support and independence for all disabled people and their carers.
Riven Vincent is a user of Mumsnet and had David Cameron to tea pre election. During this visit he assured her that more would be done to support families with disabled children. A promise he is now being accused of breaking.
The statement released by Ms Vincent can be viewed here.
Carers are estimated to save the government in the region of £80 Billion every single year. Riven Vincent has estimated that the cost of caring for Celyn in residential care would be between £2000 and £3000 a week. The cost of a respite carer for Celyn is approximately £15 per hour according to Ms Vincent. It is likely that Ms Vincent is in receipt of Carers Allowance at a rate of £53 a week. Financially the provision of additional respite is obviously more cost effective. It will also have many other benefits for Celyn and her family which can't be measured. Time as a family, the ability to make memories. For Celyn's brothers and sisters to spend time with their mum. And for Ms Vincent to have time to rest and recover.
The fact that there is now a lot of attention on the issue of support for carers and the valuable work they do is great. However this isn't a one time only thing. Nor is it new. For many years now families have been expected to care for their disabled children (even when they become disabled adults) with little or no support for years. The planned cuts to disability benefits and services are likely to make this much worse meaning even more carers find themselves in this situation.
Personally I was refused all support when I left university as I was living with my parents (in a property they had moved to whilst I was at uni and which wasn't adapted) and we "could cope". The fact my Mum was working full time and also caring for my elderly Nanny (and my Dad had just had spinal surgery) and saying she couldn't cope was irrelevant. We were told we simply needed to "pull together as a family." This situation was only resolved because my parents refused to have me in the house and I was made homeless. That's a very distressing and painful procedure.
I know of other disabled people who have had to go down that route. Of a 40 year old who was given a suitable flat to live in but couldn't move from his parents house as no care was available. And of parents of now adult disabled children who have had to accept there child is never going to leave home and they'll have to keep trying to cope as best they can. Twitter is full of similar stories today.
The focus on care provision needs to move from the cost of it financially. It needs to look at the bigger picture. The question shouldn't be "can we afford to provide X service" but "can we afford not to?"
The fact that Celyn Vincent's family have found themselves in this situation has been described as "shameful". The fact that hundreds and thousands of carers and disabled people are in the same situation is even more shocking. I hope that Riven Vincent's brave decision to go public gets results for her and she can keep Celyn at home. But mostly that this brings the issue into the public eye more and that reforms are made to provide much needed support and independence for all disabled people and their carers.
Thursday, 16 December 2010
Guest Post: How the ILF closure will affect real people
This is a guest post by Martyn Sibley and originally appeared on martynsibley.com
As always my life has been fast paced and on the tiring side. I am glad to say despite winter and general work tiredness, I am feeling good and looking forward to xmas. Due to things being busy, this blog on the recent Independent Living Fund (ILF) proposals is not the heavily researched or laid out as an intellectual thesis, as I would usually prefer ;-)
In some ways this is no bad thing either. You can easily google for what the ILF is, their history and for policy documents on independent living. What is more difficult to find is the real way in which recent events affect an individual such as myself. While I am going about my intricately balanced but effective care based life, the seeds of doubt have begun to enter my conscious.
For those who haven’t read my blogs on my care: I require 24/7 care to enable me to hoist, dress, cook, clean and have personal care. My needs were assessed by my local authority who have an obligation to provide the services I require. I am also a member of the ILF who enable more severely disabled people to access additional funding, enabling a more independent life to be upheld. Through these 2 funding channels I commission and pay 3 people to cover my care rota through the year. Having this support ensures I not only eat, drink and wash, I am able to live a fulfilled life; both career wise and socially. Hopefully my blog captures this essence and inspires others to live life to the full too.
So when news arrives the ILF will be finished by 2015 my ears pricked up. I know there have been lots of consultations around government policies and budget spending, so I didn’t jump to conclusions. Then yesterday the fateful letter arrived explaining; they had written in June of potential changes, worked with coalition government on the options, Maria Miller announced the funds closure in 2015, they will be in touch to consult on how they will fill the void in 2011.
It is a good thing that as a service user effected I am meant to play a part in the next steps. However to take away half of my care package means I would ‘suggest’ to them (understatement of the century) something should replace the void. I can only see for the sake of simplicity that the local authority would just be expected to pick up the tab. However knowing getting the amount I currently have was difficult when I moved to London. Then with the recent government cuts for local authorities, is this really the case?
If the void is filled, I dont care in what way, I will be happy and continue life as I do. However having ILF stopped and being potentially moved to another framework is bound to cause teething problems impacting my life. Should the void not be filled, the dread kicks in. With half the care package I would turn to my PAs and announce a pay cut. The likelyhood of anyone working 3-5 days straight for 24 hours is remote. They are great people and care for me deeper than just a job, but its not economically sustainable for them as people. So, then comes the point of would anyone of the right qualities work for this? No. Could I cope with less hours? As I need help to get to bed, to turn over in the night and to get up, I would need support for those hours. But then I need help in the day to use the loo, make drinks, food, go to work. This all before I might like to visit a friend every now and then… You can see the dilemma. At this stage I may need to move back to Cambridge after quitting my job and selling my flat, rely on friends and families good will, lose my independence and not be even a shade of my current self.
So whether an answer is found or not, there are a lot of worries and concerns I have right now. With 4 years to go I need to win the lottery or get rich quick. However apart from those options its a scary prospect right now.
What do you think to this and various other recent government announcements?
As always my life has been fast paced and on the tiring side. I am glad to say despite winter and general work tiredness, I am feeling good and looking forward to xmas. Due to things being busy, this blog on the recent Independent Living Fund (ILF) proposals is not the heavily researched or laid out as an intellectual thesis, as I would usually prefer ;-)
In some ways this is no bad thing either. You can easily google for what the ILF is, their history and for policy documents on independent living. What is more difficult to find is the real way in which recent events affect an individual such as myself. While I am going about my intricately balanced but effective care based life, the seeds of doubt have begun to enter my conscious.
For those who haven’t read my blogs on my care: I require 24/7 care to enable me to hoist, dress, cook, clean and have personal care. My needs were assessed by my local authority who have an obligation to provide the services I require. I am also a member of the ILF who enable more severely disabled people to access additional funding, enabling a more independent life to be upheld. Through these 2 funding channels I commission and pay 3 people to cover my care rota through the year. Having this support ensures I not only eat, drink and wash, I am able to live a fulfilled life; both career wise and socially. Hopefully my blog captures this essence and inspires others to live life to the full too.
So when news arrives the ILF will be finished by 2015 my ears pricked up. I know there have been lots of consultations around government policies and budget spending, so I didn’t jump to conclusions. Then yesterday the fateful letter arrived explaining; they had written in June of potential changes, worked with coalition government on the options, Maria Miller announced the funds closure in 2015, they will be in touch to consult on how they will fill the void in 2011.
It is a good thing that as a service user effected I am meant to play a part in the next steps. However to take away half of my care package means I would ‘suggest’ to them (understatement of the century) something should replace the void. I can only see for the sake of simplicity that the local authority would just be expected to pick up the tab. However knowing getting the amount I currently have was difficult when I moved to London. Then with the recent government cuts for local authorities, is this really the case?
If the void is filled, I dont care in what way, I will be happy and continue life as I do. However having ILF stopped and being potentially moved to another framework is bound to cause teething problems impacting my life. Should the void not be filled, the dread kicks in. With half the care package I would turn to my PAs and announce a pay cut. The likelyhood of anyone working 3-5 days straight for 24 hours is remote. They are great people and care for me deeper than just a job, but its not economically sustainable for them as people. So, then comes the point of would anyone of the right qualities work for this? No. Could I cope with less hours? As I need help to get to bed, to turn over in the night and to get up, I would need support for those hours. But then I need help in the day to use the loo, make drinks, food, go to work. This all before I might like to visit a friend every now and then… You can see the dilemma. At this stage I may need to move back to Cambridge after quitting my job and selling my flat, rely on friends and families good will, lose my independence and not be even a shade of my current self.
So whether an answer is found or not, there are a lot of worries and concerns I have right now. With 4 years to go I need to win the lottery or get rich quick. However apart from those options its a scary prospect right now.
What do you think to this and various other recent government announcements?
Saturday, 14 August 2010
"Councils pay for prostitutes for the disabled" - The Telegraph
Taxpayers' money is being spent on prostitutes, lap dancing clubs and exotic holidays under schemes designed to give more independence to the disabled.
http://www.telegraph.co.uk/health/7945785/Councils-pay-for-prostitutes-for-the-disabled.html
While other papers are content with attacking claimants of DLA and Incapacity Benefit, it seems The Telegraph have set their sights on Personal Budgets; the new-ish scheme which offers disabled people a choice in how their assistance needs are met. I guess they'd prefer to see us get 15 mins of old-style Home Help 3 times a day and only being allowed to go to the toilet in those slots.
They say:
An investigation by The Sunday Telegraph can disclose...
Which means they didn't stumble upon a story about someone using their PB to pay for a Dutch prostitute, they actually went looking for any hint of PB scandal they could find. Because disabled people aren't under enough fire already...
Edited to add: Unsurprisingly the Daily Mail are also covering the story. (Thanks to @CrippledWriter for tweeting the link.)
It's interesting that these papers - the same ones that are so keen to see disabled people off Incapacity Benefit and getting jobs - are the ones decrying Personal Budgets. For a great many disabled people Personal Budgets are the only way they are able to work. Without being able to pay someone to come and get you up and dressed at a time of your choosing you can't go out to work, can you?
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