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Your Story |
Philippa
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# Posted: 8 Feb 2008 19:07
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I am a 24/7 carer for my husband and have been since I was 28. I am now 46. We were both working full time when my husband had his first brain haemorrhage but we had to give up work when he suffered two more haemorrhages (due to an AVM) as he was left with multiple disabilities physical and cognitive including amnesia and delusions and also epilepsy. For most of the last 18 years I have been unable to work because I have been unable to get sufficient good quality respite. When he was first ill social services suggested that I put him in an old people's day centre. (He was 28). Not surprisingly I decided it would be better if I gave up work to look after him. Things have changed since my husband was first ill and I now have 10 hours a week high quality respite but it is unreliable as there is no cover if a carer is ill or on holiday. My respite also comes in two or three hour blocks because my husband gets tired. Sometimes I have to cancel the respite sometimes as my husband's epilepsy is uncontrolled and I if he has a seizure or looks like he is going to have one he needs to be with me as I am the only one who can give him his medication.This has meant it has been difficult to find part time work as I am not a reliable employee.
For most of the last 18 years therefore I have had to claim income support and carers allowance. I am currently working part time as I am fortunate to have found an employer who will let me work partly from home and will let me take my husband into work with me (and this is flexible) when my respite falls through. I am earning £80 a week which means I have lost income support, council tax relief, entitlement to free dental care, prescripitions etc. So I am only about £30 better off. Fortunately I don't have a mortgage (we bought our house when it was only £16000, and had put down a good deposit when we were working). If we had a mortgage I could not work at all. My employer wanted me to work 15 hours but I had to explain that I was actually worse off working 9 to 13 hours than 8 because I would lose carers allowance. And I would only be £20 better off (actually less because I would be taxed) if I worked another 6 or 7 hours.
I would like to see the earnings limit on carers allowance removed. I would also like to the level of carers allowance raised so that carers do not have to claim income support and go through the humiliating process of means testing. It's hard to feel that your "valuable contribution to Society" is recognised when the DWP and council keep raking through your bank statements and wage slips. I would like carers' contribution to society recognised with free prescrptions, eye and dental care and the same entitlement to help with mortgages, council tax etc as when on income support (although I guess this last bit would still have to be means tested). This would make it easier for carers to take up part time work (because it would be worth it) and would mean that carers who have some savings would be able to live without having to dip into their rainy day money. I would also like to see all 35 hour + a week carers entiltled to a minimum of 15 hours a week respite without being charged as not only is it a deterrent to working but it means that carers who are are really struggling financially are put off from getting the support they need.
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Philippa
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# Posted: 8 Feb 2008 19:41
Reply
I meant to add that Carers Allowance should be traeted like DLA and disregarded as income when assessing for Council tax or income tax
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Paul
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# Posted: 9 Feb 2008 03:21
Reply
Another case highlighting the urgent need for the Social Wage.
If implemented , would remove problems like this at a stroke.
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Boo
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# Posted: 24 Jun 2008 17:26
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The cared - for person should have a choice of carer. Too many adults with disabilities are living with their parents way into their 20's, 30's, 40's and beyond. This isn't natural.
Whatever system of financial support is adopted shouldn't trap the carer and caree into a symbiotic relationship. Change is natural - married couple can get divorced, and many do, but its much harder for disabled people to break free from unsuitable care arrangements. A social wage is fine, but the money for care should go to the disabled person, and they should be able to choose whom they want to care for them.
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Paul
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# Posted: 25 Jun 2008 00:20
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If monies for care ( however paid ) went to the caree , more situations like my experience would occur.
Elderly mother with the income , me , the only child , living with her , with all the liabilities. The only way our finances made sense was to combine all income \ expenditure , leaving a very small surplus to hold for unplanned emergencies.
Mother then died , disinherited me , and made me virtually homeless with liabilities I continue to struggle to cover. Without the friendship of an ex carer , I would have been homeless , my private pension , drawn down to ease the strain on the caree \ carer budget working against me as I still do not qualify for any benefit unless my friend decides to officially charge me rent as opposed to " Pay me when you can ! ".
My situation is somewhat unique but as recorded , an unsolvable problem for a lone carer living with a caree.
A Social Wage might just have tipped the balance ..... ability to meet liabilities whilst caring , leaving one to delay drawing down the last asset available , a private pension , potentially loosing thousands over his \ her lifetime.
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John
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# Posted: 21 Dec 2008 01:09
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The situation could become much worse as the Gregg Review is recommending that CA should be abolished. While carers could then claim JSA and not have to look for a job, JSA is Means Tested after six months.
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frances
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# Posted: 3 Jan 2009 13:14
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Thanks for that John. CarerWatch is signed up to the Wefare for All campaign which is going to try and get changes to the Welfare reforms when they go through Parliament. We are discussing the changes we need to fught for in the discussion group so please come and join the discussion there. We don't want this kind of detail only coming to light as the changes bed in and it;s all too late. We need to think ahead here.
Welfare for All - thread in the Carerwatch Campaigns Section
http://carerwatchdotcom.myfineforum.org/about513.html
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jayson lowery
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# Posted: 20 May 2009 17:25
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CARERS have got to protest. I've put a kind of BUSKING down as a means----it would scare the authorities -------less. Take a tin to the public and give them a choice of giving to us or the -ankers or the MPS. WE've got power, i wish we,d use it. Contact me to see if we can jayson6666@hotmail.co.uk. Stand up for yourselves-its your country
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Erme
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# Posted: 15 Jun 2009 13:14
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I'm sitting here without a carer and very little support and I do go busking. And it stinks I can only earn £20 a week without having to declare it. I made that in a couple of days!!! Only working 2 hours each day as well.
Busking is a very viable option for carers. I'm just sitting here worried I'm going to be done for benefit fraud now (cos I went over my £20 allowance) and thinking....great...full investigation...more stress and more psychosis here we come and I've only just gotten out of that.
Not like there's any day centres open anymore - thanks Gordon Brown.
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