[BBC News] Cash lump sum for bereaved carers

[bluemonday]

I'm delighted for you.

 

Unfortunately most of the carers I know have had to give up work and provide care full time - well over the 35 hours a week that the PATHETIC carers allowance pays so generously at £1.42 an hour. Those that can manage to squeeze in some work are limited to earning just over £80 a week.

It seems that they have to pay bills, eat food and the other little troubles that require money so find themselves having to claim this magnificent £1.42 an hour.

 

In the meantime, they are of course each saving the government a few hundred pounds a week in care home fees.

[Albert Tatlock]

We just send any of our defunct relatives to the workhouse - far less hassle.

[Lonan3]

I'm delighted for you.

 

Unfortunately most of the carers I know have had to give up work and provide care full time - well over the 35 hours a week that the PATHETIC carers allowance pays so generously at £1.42 an hour. Those that can manage to squeeze in some work are limited to earning just over £80 a week.

It seems that they have to pay bills, eat food and the other little troubles that require money so find themselves having to claim this magnificent £1.42 an hour.

 

In the meantime, they are of course each saving the government a few hundred pounds a week in care home fees.

As Professor Tony Attwood said (he was talking about autistic children - but the same rule applies):

"Governments are not benevolent agencies, they are not charities, they are basically trying to get away with as little as possible, supposedly for the benefit of the taxpayer. So there is often a fight ... between what a person needs and what governments will provide. And governments will go kicking and screaming to the eventual level where they may provide a certain amount of services but rarely is it sufficient."

[House]

I'm delighted for you.

 

Unfortunately most of the carers I know have had to give up work and provide care full time - well over the 35 hours a week that the PATHETIC carers allowance pays so generously at £1.42 an hour. Those that can manage to squeeze in some work are limited to earning just over £80 a week.

It seems that they have to pay bills, eat food and the other little troubles that require money so find themselves having to claim this magnificent £1.42 an hour.

 

In the meantime, they are of course each saving the government a few hundred pounds a week in care home fees.

As Professor Tony Attwood said (he was talking about autistic children - but the same rule applies):

"Governments are not benevolent agencies, they are not charities, they are basically trying to get away with as little as possible, supposedly for the benefit of the taxpayer. So there is often a fight ... between what a person needs and what governments will provide. And governments will go kicking and screaming to the eventual level where they may provide a certain amount of services but rarely is it sufficient."

 

It's a good interview, well worth listening to.

 

http://www.iomtoday.co.im/news/Special-rep...-the.3981905.jp

 

Our daughter is autistic and we got turned down for DLA (Disability Living Allowance) the first time we applied for it. Our daughter is a wonderful, gorgeous little girl but she's very demanding and I often comment to Mrs House that I get the easier end of the deal by working a 'regular' job. (Even when I'm doing stacks of overtime or working over the weekends, I still think Mrs House works harder than I do.)

 

We'll be applying again for DLA before too long, and if we get turned down again we'll definitely be appealing and taking it as far as we can, 'cause as autistic children get older the gap between them and 'normal' becomes far more apparent - such as still wearing nappies, no speech, living largely off formula milk, takes two adults to do the shopping (one to shop and one to look after the child), the child regularly waking in the night, needing constant attention during the day with tantrums/screaming/violence if the slightest thing goes 'wrong,' refuses to be left alone with anyone outside of mum and dad and her in-laws, no friends or interest in other people, and so on.

 

It took me four bloody hours to fill the DLA form in last time, (sheets and sheets of A4 to be handwritten), which is ever so nice with its constant platitudes along the lines of 'We know this may be difficult but please tell us how your child is really really disabled and differs massively from the norm, on the off chance you might get £50 per week out of us,' and at the end of that we had a half hour assessment followed by what essentially amounted to a 'Piss off' letter - not disabled enough, apparently.

 

Prof Attwood is quite correct when he says that there needs to be a 24 hour assessment period, or longer, to really get a feel for what caring for an autistic child is actually like. I'm sure it's very easy to not give a shit and do it badly, same as all carers' roles, but also as with all carers' roles (be it for autism, other mental disabilities and/or physical disabilities, dementia, the frailness of old age, you name it) - to actually do it consistently, compassionately and properly is quite possibly the toughest challenge most people will ever have to face.

 

A lot of carers, and I'm talking in the widest sense now, are unable to work full time or even part time because of their duty of care to a person, and in doing so they save 'the system' the hundreds of pounds per week that it would cost to have that care provided elsewhere - (and they do it a hell of a lot better 99% of the time as well) - for the family unit around these carers to ask for a measly few quid a week to help meet the bills in the absence of that wage coming in, really doesn't seem overly greedy in my humble opinion.

[Pollyparrot]

Wow how wonderful!

It will be on top of the current carer's allowance of £50 per week, which continues eight weeks after the cared for person's death.

For some reason, the article neglects/forgets to mention that the £50 is conditional on providng AT LEAST 35 hours a week of care. That equates to £1.42 an hour.

I'm surprised that everyones not rushing to do the job.

Top dollar!

I don't have an exact figure, perhaps someone who does might care to enlighten the forum as to what the hourly rate is to employ a carer privately. I'd guess it's slightly more than £1.42 an hour.

I get carer's allowance for looking after my mum 24/7 as she lives with us, how much an hour does that work out??? You'd give a monkey more peanuts than i could afford to buy with that!!!!

[louanne]

I care for free

I used to be a full-time carer a few years ago, obviously the carers allowance was not as much as £50 a week, but that is the only allowance you get the only thing the government give you is to pay your national insurance stamp for you. If the person should die who you are caring for your national insurance stamps are your respnsibility immediately. If the person you are caring for has been on the full disability allowance{depending on their type of illness} everything stops from the day they die so not only are you having to deal with the death of a love one you then worry about how you stand financially and if you have given up work to be a carer will you get a job etc. So to receive a payment of a £1000 must be quite a load off your mind for a while until you sort yourself out. Please dont undermind the job of the carer, it is not an easy one. You are sometimes doing jobs that normally a qualified person would do and live constantly with the worry of watching someone you love dearly possibly suffering with a terrible illness. If anyone deserves such help it is the home carer, and to the person who cares for free can you not get some help?

[thesultanofsheight]

If the person should die who you are caring for your national insurance stamps are your respnsibility immediately. If the person you are caring for has been on the full disability allowance{depending on their type of illness} everything stops from the day they die so not only are you having to deal with the death of a love one you then worry about how you stand financially and if you have given up work to be a carer will you get a job etc.

 

Surely you can't expect to be paid for caring for a dead person?

 

(I'll happily get my coat, but it struck me as an odd statement to make).

[House]

If the person should die who you are caring for your national insurance stamps are your respnsibility immediately. If the person you are caring for has been on the full disability allowance{depending on their type of illness} everything stops from the day they die so not only are you having to deal with the death of a love one you then worry about how you stand financially and if you have given up work to be a carer will you get a job etc.

 

Surely you can't expect to be paid for caring for a dead person?

 

(I'll happily get my coat, but it struck me as an odd statement to make).

 

You know exactly what was meant in the post you quoted.

 

Not worth getting the gag in really.

[thesultanofsheight]

If the person should die who you are caring for your national insurance stamps are your respnsibility immediately. If the person you are caring for has been on the full disability allowance{depending on their type of illness} everything stops from the day they die so not only are you having to deal with the death of a love one you then worry about how you stand financially and if you have given up work to be a carer will you get a job etc.

 

Surely you can't expect to be paid for caring for a dead person?

 

(I'll happily get my coat, but it struck me as an odd statement to make).

 

You know exactly what was meant in the post you quoted.

 

Not worth getting the gag in really.

 

Please explain. I admitted to being cruel and confused. What was your point?

[louanne]

If the person should die who you are caring for your national insurance stamps are your respnsibility immediately. If the person you are caring for has been on the full disability allowance{depending on their type of illness} everything stops from the day they die so not only are you having to deal with the death of a love one you then worry about how you stand financially and if you have given up work to be a carer will you get a job etc.

 

Surely you can't expect to be paid for caring for a dead person?

 

(I'll happily get my coat, but it struck me as an odd statement to make).

 

You know exactly what was meant in the post you quoted.

 

Not worth getting the gag in really.

 

Please explain. I admitted to being cruel and confused. What was your point?

I didn't mean to imply that we should get paid caring for a dead person. What I meant was as soon as the person dies {rightly so} all benefits stop. So for a while until things are sorted out financially the ex-carer might not know how they stand conerning their money. So I meant if they know a payment of £1000 will be available to them that will help until ease the burden for them because as we all know anyone who has experienced a bereavement money is always an issue as expenses occur that you might not anticipate. Hope I may have made myself clearer.

[House]

I totally agree with FH about the woeful lack of speech therapy available for autistic children here on the Island. My daughter never sees the speech therapist any more due to lack of resources and so we've had to make provision for her privately instead.

 

This is not acceptable because this is one of the key areas where autistic people need support in order to reach the goal of an independent life. This is a social communication problem and so the obvious answer is adequate speech therapy. What will happen to all these children who can't express themselves properly as they grow? They'll turn into frustrated, depressed adults with anger problems. Who will cope then? They certainly won't!

 

Imagine someone who can't express when they feel sick or have a basic need that isn't being met? Imagine a person without speech in an accident who can't express how their pain feels apart from to lash out? A friend worked in the field some years ago and was regularly attacked by autistic adults with no speech who were in pain. Who protects the workers against attack where two employees are trying to deal with thirty special needs adults alone? Who relieves the pain of speechless adults who can't express where the hurt is?

 

We take it for granted that we can point out what and where our pain is and have it treated whereas people with impaired speech cannot. Speech and communication are vital abilities! Therefore the speechless are DISABLED and VULNERABLE!

 

Please understand that the Island is an autism "hot spot" with 1 in 70 girls and 1 in 50 boys born on the spectrum every day as opposed to 1 in a 100 on average across. Where is the provision for these vulnerable children and young adults? The priorities are all wrong and the species is going downhill rapidly when money is the only criterion. We need to look at our values and the meaning of our lives as a whole population because if the state acts like a giant corporation, cutting costs and trimming away the "fat" then society will, to put it bluntly, go down the toilet. To quote the band Bad Religion...

 

in this land of competition the compassion is gone

yet we ignore the needy and we keep pushing on

 

I have a friend who lives across who is struggling with Asperger's Syndrome, (and was recently admitted to hospital with suicidal depression), and I can only imagine that people here are suffering a similar fate due to the lack of funding. She's depressed and suicidal and having to fight for every little scrap of help that she gets. I'm absolutely sure that many autistic people are suffering in a similar way here on the Island due to underfunding. I don't want my daughter's future to be littered with low self-esteem and mental breakdowns because the support wasn't provided at key moments in her development. Wealthy people can afford to pay for provision but why should the average person with an autistic child see them suffer needlessly?

 

Money gets wasted by our government HAND OVER FIST on ridiculous plans and bringing in contractors to do work a proper civil servant could do. Put that money into health and into the support of autistic people because this is a societal time-bomb waiting to explode. That aside, I don't want to see another suicidal young adult with ASD. Okay, so my friend is living across, but remember the statistics I mentioned earlier in relation to the lack of funds! This is happening here too! People of autism are capable of so much given the right opportunities. They need the support now!!! So....

 

No more self harmers and suicide attempts!

 

More funds to help autistic people express themselves!

 

Less government waste!!!!!!!

 

Thanks Dr Attwood for your article because more publicity is needed to raise awareness of this subject.

 

H (proud mother of an autistic child).

[gazza]

Please understand that the Island is an autism "hot spot" with 1 in 70 girls and 1 in 50 boys born on the spectrum every day as opposed to 1 in a 100 on average across.

 

would that be the manx inbreeding takeing its toll after many generations, not that im saying your familys interbreed by any means, but a fair quastion with them sort of figures on the high side, but there has to be a reason all the same,

would be quite intresting to see why the iom is a hotspot,

 

my views on cares is that u do what u have to do, and gd on you for doing what you do,

i for one dont think i possably could do it, so top marks for anyone that does, as i seen first hand how hard it can be and what a impact it has on familys and life, and not a life i would want, and hope i never have

 

now if you thought the top remark was close to bone, this might just top it off,

no disrespect to anyone who has problems or looks after someone with a problem

(gets ready to leave)

 

but IMO i think anybody born with a disability ie un able to care for them selfs should be (trying to put it nicely) sent to sleep, u know what i mean,

i know quite harsh, but thats what i think, i allways have, maybe its from being around animals all my life, and used to see life and death eveyday, its natures way of keeping ppl/animals strong, keeping the fittest alive,

i know some of this my upset a few ppl but just my way of thinking, so hopefully i havent upset anyone with my remarks,

and if i have sorry,

 

i know i have wriiten up in my will that if i become unfit to care for myself that im to be put down humanly in one of the places thats allows it, or failling that push me off a bridge,

 

and if spelling was a disabilty i woulden be here now,

 

 

i shall leave now

[Foxtrotlima]

gazza, what you have said (and as you rightly know) is controversial.

 

All I would like you to do is just consider one thing to factor into your opinion.

 

People with disabilities (and I am assuming that you mean learning disabilities by your post) view themselves as normal. I worked with adults with learning disabilities for many years and will never forget being asked by someone I was caring for:-

 

"Who looks after you when you go home?"

 

It really did change my outlook on what I was doing. That really did hit home that whatever the person's perceived disability is, it is their normality. This person assumed that whatever help I was giving them, someone would do the same for me when I finished work.

 

Most people with disabilities are monitored for the majority of their day, and rightly so for their welfare. If somebody monitored me 24 hours a day, 7 days a week I can guarantee you that there would be things that I would do that the majority of people would think were odd or would not fit in with their perceived normality.

 

I personally like to respect the uniqueness of each individual. Uniqueness makes us who we are, it is our identity, flaws and all.

[Gladys]

Well said FTL and thought provoking.

 

Who said 'it is a mark of a civilised people how they treat the more vulnerable amongst them'? May be a misquote, but it sums it up nicely. We are now too knowledgeable and able to deal with disabilitites, even almost 'cure' them, that it would be a hugely retrograde step to leave babies born with physical abnormalities out in the elements to die, etc. The knowledge that allows us all to be relatively safe from most infectious diseases, chronic illnesses, etc. is also the knowledge that assists people with the whole spectrum of disabilities to a) survive beyond previous expectations, b) do so with a reasonable quality of life and c) often become 'productive' members of society.

 

Not that I totally disagree with Gazza, but I think it is a debate to be had as there may well be circumstances where keeping someone alive is contrary to their own interests. But that gets into the euthanasia debate and I don't know if it is particularly productive to introduce that debate to this topic.

[bluemonday]

Leaving aside the crass, stupid, and insensitive one liners some wankers seem to need to put into any debate, it seems that anyone who is actually being a carer for whatever reason is not looked after.

Simple fact: £1.42 an hour for a minimum of 35 hours plus additional restrictions on earnings is an insult.

 

It is not a case of being a carer should be financially rewarding.

It is a case that being a carer AND SAVING THE GOVERNMENT HUNDREDS OF POUNDS A WEEK IN EACH CASE should not place the carer in a position of poverty.