or naive, to be so shocked about carers payments?

[boschy]

My DM, aged 83 gets lower level attendance allowance. Her mobility has significantly declined recently so I spoke to Age UK about the chance of increasing it.

To get higher level, a princely £80 per week, you have to have someone in the house all night, and ideally apparently sitting up with the person, rather than sleeping in the next room as I have been doing.

To get carers allowance, another magnificent sum of £59.75 per week, you have to provide care for 35 hours per week - oh, and if you earn more than £100 a week you're not entitled to it anyway. And its taxable.

I always knew carers got a raw deal, but this just absolutely takes the piss. I love my mum, and I am doing 35 hours caring a week at the moment, the fact that I wont get the allowance wont stop me of course.

I am just so so shocked at the low level of the money. How on earth does anyone manage to survive?

I hope that as she gets better her mobility will improve and I will be less involved - but carers of the world, I salute you.

Though I don't see why they can't provide more when DCs are disabled for perhaps 10 years as an assistance to allow the parent carer to establish a career/workplace skills.

But disabled children don't stop needing care after 10 years; if anything their care needs increase as they get older and the parents can't even choose to work term time school hours as their disabled adult children don't go to school.
Whilst I do understand that carers allowance is expensive, the alternative is much more expensive. Carers save this govt billions of pounds each year. There should not be a time limit imposed on carers allowance.
If parent carers want to return to work then the govt should provide career and workplace skills training but they also need to provide appropriate care provisions for the disabled children / adults as currently these don't exist for those with moderate and sever needs. I'm not sure how a parent can suddenly be expected to return to work after 10 years of caring for a disabled person who still needs caring for.

If you need help with your caring responsibilities you can get an assessment of your OWN needs from your social service department (but they all have different names) the one that 'looks after' the person you care for. You ask for a carers assessment. They have to do one as soon as is reasonable possible and they ask about you, what you need. They can then put services in to help you as a carer carry on, rationale is that they want you to carry on so they don't have to step in , but not everyone knows about these. Examples of help available, washing machine, alternative carer so you can pop out, respite care, new PC so you can shop online or acces education. Tons of things it's what YOU need. Do ask about it and I know it's shit . I am now a carer again after break now for my disabled daughter previously for severely mentally ill DH (now ex ) and also terminally ill mum and acutely ill dad. But I used to work for a carer organisation so I was in good place to get help . If not for their advice I would have collapsed myself

My LA do not do carers assessment for parent carers. They just give you a cares assessment form to complete yourself and then place it on the child's file. I have taken the LA to task over this as it isn't sufficient or even morally (or legally) adequate, but to date I haven't gotten anywhere.
Not all LA's adhere to the govt guidelines as far as carers assessments and meeting the needs of carers is concerned.

They can assess your needs all you want but if there aren't the services available, you aren't likely to get any help.

Yes I got a carers assessment, that was how I got access to funding. Definitely worth looking into, though it seems some LAs are worse than others. The respite services aren't suitable for my dd but we get an individual budget instead which is cash so I can take her out for leisure activities. I don't really get a break though as I need to go with her. School hours are my only respite which is why I wouldn't want to work as well as I'd have no time at all to myself otherwise.

I don't think I'm made to feel like a scrounger for being a carer, I am on full benefits but generally treated very differently from times I've been on benefits as a lone parent/jobseeker - people are much more understanding (although sometimes people seem to think I'm 'just' a lone parent and don't get that my dd is disabled as her disabilities are invisible).

well I've got a day and a half off this week, as my brother is there now. (400 mile round trip for him). I know this is a luxury....

was still there for 2 hours this morning, to help sort domestic stuff out and be there for visit for OT assessment. the best people I've dealt with have been the Intermediate Care Team; today's lady was able to immediately provide a frame for round the loo and a pressure cushion for DM to sit on. SS are coming out at some point to assess for stairlift and see whether it is feasible and if they will make any financial contribution.

But really nothing now can actually happen til we see consultant again on April 9 and we can assess long term care needs.

she wont have 'paid for' carers, ie via SS or local agency, but wants me or her cleaner (who is lovely and would probably pop in for half an hour daily if reqd) to do the caring.

so now I have to go pay some bills, chase up some invoices and do some work - to keep the roof over our heads! or I could let the roof fall in, and then claim the princely allowances available - I think not.

sorry, its all me me me, but I WISH that all you carers out there got the proper recognition and support that you deserve, and that the people you care for deserve.

The time when my child was at school was spent sleeping after being up most of the night. For many years I was essentially a night worker . My life only improved when a night time carer was supplied. Even then I help until my son starts to fall asleep which is often 11pm. I get up at 5. 30 am as my body clock is stll in the sleep deprivation mode and I cannot reset it. I am the second person needed so I cannot go out on the town or leave the house. When their child is at school I think a lot of Carers just try to catch up on sleep and fit in the basic household tasks, attend appointments, arrange medical supplies, etc I think for many parent Carers and definitely those looking after elderly family members there is no leisure ????

boschy Thank you for starting this thread. Your description of the tasks you are doing shows how much juggling a working Carer has to do.
"Keeping a roof of your head" is very important and it is the tremendous financial impact that stops a lot of people from doing what they want to do and look after a loved one who is vulnerable and in need.

There are lots of different types of Carers, I really think that a complete overhaul of Carers Allowance that takes into account the different needs of Parent Carers, the sandwich generation, Pensioner Carers etc. will go some way to alleviate the pressure on the NHS and improve so many lives and give vulnerable people and their families dignity and security.

Instead we have assessments which do not lead to services and a £2 a week increase in the earnings limit.

zebra I am just wondering if I have time for a nap! before going to collect DD2 who has forgotten her bus pass, has no cash and would therefore have a 2 hour walk. then there is the chance to pop into the shop to get some more stuff DM needs while I'm out, still got to do some stuff to DH who is going abroad on a work trip at 4am tomorrow, luckily DB will walk the dogs for me today while DM is sleeping.

I'm going to keep this thread going, wouldnt it be great if there could be a mumsnet petition or something about carers rights and the support they need?

boschy Ive asked HQ like a million times if they could pass thread like these onto you know who at number 10 and anyone else of his minions.

THIS is what they need to see.

THIS is what needs to go into the national papers/news etc.

Local authorities HAVE to follow the guidance for carers assessments for carers of children as well as those of adults. They don't always have the funding to provide everything a carer might want but they do have to do an assessment of needs and if nothing else they keep a register of 'Unmet needs' that goes to central govt so they can see gaps. It's by no means perfect but it DOES make a difference.

If any of you are struggling and need help with advocacy I urge you to seek out your local branch of crossroads or carers uk (or the national office) who can be vey helpful.

Even though it feels like you are hitting your head against a brick wall it is helpful and could help others as well as you. I got a whole system changed in my LA because I badgered and badgered . Not sure I would have the energy now though.

Exactly overthemill.

It requires time and energy to lobby, campaign and educate.

Most people are so worn down by it all that they are completely defeated.

one problem it seems to me is HOW you can access what you need - because very often you (one) doesnt know anything is available. or if something is available, how you would qualify. one look at the govt website had me bamboozled, and I like to think I am a reasonably intelligent, educated person.

Overthemill: sadly most carers have neither the time nor energy to pursue an assessment of their needs knowing that the resources and services are not available to meet any identified needs. What people are legally entitled to and what people have the mental capacity, physical energy and emotional strength to fight for are two very different things, particularly when those people are carers.

impatient I know and that's why I suggested finding local advocate/carers group to help. I'm very experienced and skilled at this stuff as it used to be my job years ago but now as a full time carer on 'duty' pretty much 24 hours a day I am exhausted and happy to ask anyone for help! I just don't want people not seeking help when they obviously need it (and decent benefits advice by the sound of it) when there is lots of help available.

When I was first diagnosed and told to claim DLA, my dh was told he could apply for carers' allowance but it wasn't worth the time it took to fill in the form. We had no idea what help we could get, but then we moved to the other end of the country, and my SW here has been fantastic as has my physio, my OT, my MS nurse and uncle tom cobbley 'n' all! Though my friend tells me that I can claim all sorts of other financial benefits, which I haven't done, as I feel I'm getting so much help as it is.

I agree that carers' allowance is an insult really.

I asked for help from the local carers centre and was told that they are only able to help with assessments for those caring for people other than their own children who are under the age of 18. They have acknowledged that this is a huge gap in services that needs to be looked at, especially as the family and children's bill has recently made it law for parent carers to have the same rights.

Another good point is that you don't know what you don't know IYSWIM. CA may be an insult and a pittance but it is better than nothing and there are probably loads of people out there who don't even know they can claim or have been put off. So much conflicting and confusing info doesn't help.

We only stumbled across it by chance 3 YEARS after we could have claimed - of course they didn't backdate it when we applied.

I was told that because I seem to be coping so well, there's nothing they can do for me.

FFS, I cope because I fucking HAVE to. There is NO ONE around to help me and I mean NO ONE.

I had a look at the carers assessment thing and I don't even qualify for that either. I can't be bothered to look anymore.

It's awful isn't it?

You'd think that seeing as you have to provide a minimum of 35 hours care a week to qualify, that they'd at least pay NMW for those 35 hours.
£6.31 x 35 = 220.85

Shockingly, even if you paid the awful apprentice wage (£2.68) then you'd get 93.8 a week. Or, £1757 a year more for being an apprentice than being a carer.

I just don't see how it is justified at all - people talk about needing to increase minimum wage because you can't live on it working 35 hours a week (£11.5k annually) and yet even carers that earn the maximum £100 extra a week will be so much worse off (£8,320 annually) and they're not a priority!

the money thing is completely senseless. I doubt I could work a 35 hour week and do 35 hours caring - although I am aware that many do.

this is my 'day off' - I have made 3 calls in relation to mum's health, 2 calls about DD1's orthodontics, paid some bills, organised some other household shit, taken her paper/glass and ours to recycling bank, been to post office and paper shop to pay bill, put washing on, still got to take dog to vet, done some minor level work but am putting off the main thing I need to do... DH left for an overseas work trip at 3.30am, still got to load dishwasher, get more washing on, put away mountain of clothes, make bed etc etc etc. DDs will be home from school requiring company if not looking after (teens).

DB goes home tomorrow - will take him to station, and then its back to me doing the caring again for the foreseeable future.

And don't forget, when you reach state pension age, you. No longer get carers allowance, you get the reduced amount of a state pension instead, because of course the day you reach retirement age your son no longer needs the 24/7 care you give him and you can retire!

I will never forget the day my mum was told this - my lovley placid mum went balisstic. Little good it did her though as she was dead from a stress induced heart attack a year later.

I have 3 with special needs, we didn;t realise until late that we had a genetic blip and we had our family by then. One of our children is NT, I don't claim for ds3 but I should according to Paed, I need to be ready though, claiming in itself is horrible and a feat of acceptance. I still think he will suddenly start to lose his issues, not helped by a diagnostic system that seems to be actively delaying his assessment (he does have a statement. 5 hours a week).

The oldest has ASD and attends a base unit, he is extremely aggressive and despite being a teen not allowed out without supervision. Long term I think he will have a job but will always need help. DS3 is ten and also attends a Base, he will never be independent, he also has ASD.

I get Carer's Allowance. We have no family in Wales so we can only have any break if we can afford to drive to my family in England. We have been refused any respite or help many times over, apparently if your child attacks you locking yourself and other kids in a bathroom is suitable enough. We lost the home we owned as the exhaustion of working nights and struggling to sleep with noisy asd kids made DH ill. he's now self employed and it's getting easier slowly but we still need HB to survive- we can;t move into a couincil or LHA home as they refuse to accept we have a need for a 4 bed (DS1 and DS3 need own rooms), and Social Worker said they must always have own rooms.

We've just had to scrap the second car, the one that meant DH can work when I am at the many appointments we have. I've managed to get a degree and most of an MA since I started caring (though obviously Carer's Allowance was stopped), but isolation means a lack of references and I've been told I am too out of the game / at risk of being unreliable to employ. I do have a chance of support work in schools for an agency and I will grab at that but it's unreliable work, some weeks nothing at all.

I love my boys and everything is better with them but society's views of the lack of value of carers has decimated what we had worked for, I was a charity Manager before the boys. The ASD I can cope with, it's the bureaucracy and admin and lack of value- and I know many other carers say the same. Increasingly we are lumped under this category of 'economically inactive' but that's wrong, if we were not caring the state would be liable for far more in the way of costs. We are increasingly counted as the unemployed, again how does that work when you have to prove you care for 35 hours a week?

Oh- I hugely recommend Carer's UK for getting advice and help, they cover parent carers as well. Not all charities will do that.

I will shortly have an MA in Autism, it's the only way I've been able to get the boys into decent schools and the like, indeed I only KNEW about the suitable schools because I studied with the Heads and even then it was a fight. Regardless of whether it's on paper or not, most carers end up experts in their loved one's needs- Mum cares for my Grandad who is in hospital right now and she has become an expert on the system (a week after admission after a fall they were about to discharge him home without noticing or recording he is now unable to take a single step!). I have also learned to be a fighter, a politician, a teacher, and a supporter. I have gained many friends in similar boats, and lost quite a lot in different ones. My marriage has survived but only just (divorce rates amongst carer families are really high- 80% I think), we've still got a roof over our heads which we have doubted a few times, and the boys are all doing as well as they can.

It's not all negative by a long way, I'm just rather sick of living hand to mouth when we both work 24/7 in our own ways, and the endless accusations of scrounger in the media.