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Caregivers USA - Carers UK Forum

Caregivers USA

Share information, support and advice on all aspects of caring.
I found this on a site from the USA. Somebody asked if there was any benefits for "caregivers" (carers over here). Here was the reply:

"AS a social worker, I can tell you that there isn't any program that will benefit or pay a family member for taking care of another family member. Caring for each other is the expectation especially when it is family. On the other hand, you can apply for Family Medical LEave (FMLA) through you employer (it's a Federal law) that will allow you to take time away from work and secure your job. However, it will not "pay" you if you're not working.

Obivously, you can see the problem if people decided to take time off to care for family members and wanted to bill the state or the federal government. Right?"

I was almost shocked. Image
However much we moan about the NHS and services for the disabled and carers in the UK, we have to be very grateful we don't live in the US where your bank balance is all important to the services you receive!
Hi
I have always said that i am a husband that is just doing what i should do look after my wife as my wife would look after me in the same circumstances yes it's a family responsibility nice if you can be paid if not i still have to do it i don't ask favours i just get on with it.
I don't get paid for it never have don't class myself as a carer just giving assistance where needed.
I got no help with my children when I was bringing them up and some of our children we adopted but they are all our children and we love them equally but they are my responsibility we wanted them we have to provide for them in the good times and the not so good times that's life.
So yes we are lucky we have the NHS i know what it is like to live without it i also know they make mistakes as with the treatment with my wife but i still wouldn't be with out it moan or not it's still a lot better than many other countries.
John
Hi
I have always said that i am a husband that is just doing what i should do look after my wife as my wife would look after me in the same circumstances yes it's a family responsibility nice if you can be paid if not i still have to do it i don't ask favours i just get on with it.
I don't get paid for it never have don't class myself as a carer just giving assistance where needed.
I got no help with my children when I was bringing them up and some of our children we adopted but they are all our children and we love them equally but they are my responsibility we wanted them we have to provide for them in the good times and the not so good times that's life.
So yes we are lucky we have the NHS i know what it is like to live without it i also know they make mistakes as with the treatment with my wife but i still wouldn't be with out it moan or not it's still a lot better than many other countries.
John
John I see where you are coming from. However I do think the State should provide financial assistance. As well as our birth three daughters we have two adopted sons with special needs. The elder one is now 35 and lives in sheltered housing. We decided when he was 21 we could not take the stress his behavioural problems were causing us any longer, and we insisted the social services removed him. Our younger son (23) has Down's Syndrome he is a lovely lad, although quite severely mentally disabled and we hope he will live with us for the foreseeable future. But if we didn't have his DLA and income support it would be very difficult to keep him with us, since my husband is now disabled and can no longer supplement his pension.
John I see where you are coming from. However I do think the State should provide financial assistance. As well as our birth three daughters we have two adopted sons with special needs. The elder one is now 35 and lives in sheltered housing. We decided when he was 21 we could not take the stress his behavioural problems were causing us any longer, and we insisted the social services removed him. Our younger son (23) has Down's Syndrome he is a lovely lad, although quite severely mentally disabled and we hope he will live with us for the foreseeable future. But if we didn't have his DLA and income support it would be very difficult to keep him with us, since my husband is now disabled and can no longer supplement his pension.
I wish to ...gently...put forwards an alternative - not about the principle of carers being remunerated, but about the process. Your son is legally an adult, and even though he has limited ability, he should still be able to make a decision about who provides his care. At the moment the carers allowance supplements his DLA but he has no control over it. Why shouldn't all the cash for care go to the disabled person, and then they decide without fear or favour who to employ as their carer? The disabled person needs more power in this system, and carers allowance creates a perverse incentive - albeit a small one - for adults to carry on staying in the family home. Talking to young people with disabilities, many of them who are able to express a view resent this continued dependence on their parents and desire more independence and privacy.

DLA and attendance allowance usually go into the family pot - in the case of children, quite legally as they are minors and legally unable to manage thneir own affairs yet.

We also need to consider the unfair rule that a carer cant get paid two lots of carers allowance for two disabled people.

I think simplification would be the ideal - creating a level playing field. Wrapping up Invalidity benefits, DLA, Industrial Injuries Benefits, Disabled War Pensions, Carers Allowance, DLA, and attendance allowances together with Direct Payments into a single - non-means tested - package of financial support directed to the disabled person and based on a sliding scale of need.

My oath, now just watch all the vested interests come out of the closet!
Our son has no ability at all to decide for himself about such matters. As he appears to be as happy as the day is long, we can only assume he likes the present arrangement!

I think simplification would be the ideal - creating a level playing field. Wrapping up Invalidity benefits, DLA, Industrial Injuries Benefits, Disabled War Pensions, Carers Allowance, DLA, and attendance allowances together with Direct Payments into a single - non-means tested - package of financial support directed to the disabled person and based on a sliding scale of need.

My oath, now just watch all the vested interests come out of the closet!
Do I have a vested interest? That depends on who administers your proposal, if it's the LA then we both lose a substantial proportion of our income, if it was the DWP or the NHS we could be better off. As this is already being considered both by ministers and the Office of Disability Issues I'm obviously concerned, the additional costs of two people with needs is substantial and were our disability benefits reallocated to pay for others' perhaps more pressing needs, although that is often a matter of perception when it comes to social workers, our financial survival and therefore our ability to more than subsist at a very basic level would be in question. At least under the current system people with care needs have three opportunities to at least partially meet the additional costs of sickness and disability: through LA social services funding, through NHS continuing care funding and through the benefits system, combining the spending into one pot administered by one authority seems, for us at least, to be a potential recipe for disaster.
Interesting from all points of view.

My own 23 year old has Downs Syndrome, and if he was asked, he would say he wanted me to look after his money, which at the moment I do, but we do hope that over the next ten years , he will be able to at least manage some of his own decisions. He has an excellent ILF support worker, who has taught him a vast amount of money management. He, myself and my husband try to work together to find new ways to support my son in learning.

I have recently realised how much my son depends on me, and turns to me to respond to questions aimed at him, so I am trying really hard to stand back a little, and give him a chance to do this for himself.He is having his bedroom decorated later in the year, and we are trying to involve him with the costs. He has already decided that the new TV he wants, can wait till Christmas, as through choice,he would rather put the money towards the decorating. It is very hard for us sometimes, as we would love him to have the TV when he has his room done. but we are proud of him for being able to make this decision.

What I think is needed with people with learning disabilities is age appropriate maths and english books. My son can read well, books such as The Lion, the Witch and the Wardrobe,and all the Harry Potter books, but he will not use small childrens maths and english books, and why should he?

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Our son can read at about a 6/7 year old level but never grasped the concept of maths, nor was he interested in the subject . He cannot make any adult decisions at all. I have to tell him to change his clothes,and occasionally assist with very personal care, as he doesn't always shower himself adequately. He cannot shave himself. He cannot tell you what is wrong if he is ill, although he does talk. I have to guess at what is wrong, unless it is obvious. He will always tell you he is fine, even when he is ill. A couple of years ago he scalded himself with a very hot shower, which a guest had turned up to full heat! He was obviously upset and in pain but I couldn't work out what was wrong, until the next day when I nearly scalded myself! He will always need to have all his decisions taken for him as he shows absolutely no interest in making them for himself. But as he is very happy, a joy to be with, and very easy to care for, we go with the flow.
Our son can read at about a 6/7 year old level but never grasped the concept of maths, nor was he interested in the subject . He cannot make any adult decisions at all. I have to tell him to change his clothes,and occasionally assist with very personal care, as he doesn't always shower himself adequately. He cannot shave himself. He cannot tell you what is wrong if he is ill, although he does talk. I have to guess at what is wrong, unless it is obvious. He will always tell you he is fine, even when he is ill. A couple of years ago he scalded himself with a very hot shower, which a guest had turned up to full heat! He was obviously upset and in pain but I couldn't work out what was wrong, until the next day when I nearly scalded myself! He will always need to have all his decisions taken for him as he shows absolutely no interest in making them for himself. But as he is very happy, a joy to be with, and very easy to care for, we go with the flow.
So...our kids make mistakes, and they can be painful. But didnt we also make mistakes when we were young, and isn't that the best and only way to learn? Our kids have built up a simple but fiendishly clever defence mechanism. They tell us what they think we want to hear. Most of the time it even works because we like to go along with the fiction. And heck, when we were kids we played the same games with our parents too. I am glad my parents didn't give me the shave test when I was 18, 'cos I went off to University and just grew a beard. If my hair needed cut, I cut it myself. Strangely enough, I was never short of female company....

So did we believe our parents know best? ... er, well I didn't, and I hope my kids don't either!

I figure all our kids are pretty much the same as all the other kids out there, and after the age of fourteen or so they find their Mum and Dad a pain to live with. Problem is, if they have a disability they don't have enough experience or skills to know or argue for many other alternatives.

I'm planning to die (peacefully in my own bed of course!) sometime in the next forty years or so, and I would rather my son wasn't the first person to discover my body. So, I need to help him get some independence soon - the confidence to realise that he doesn't need me.

Where is he now? Oh, just staying with friends for a few days on a small island off the West Coast, and having lots of fun.

Where will he be at 21? Definitely in his own space. Why am I so confident he will make it? Because I'll make sure that he has lots of experience of independence first. And that means making mistakes...