Budget - tougher for DLA claimants

krisskross

sh1305 wrote: »

Exactly. Should this also mean that people stop breeding altogether because there's a chance (which I know is higher for women 35+) that thy'll give their child Downs Syndrome?

I think all possible precautions should be taken to avoid passing on genetic defects and if this means having no children then so be it. Personally I would have much rather remained childless than to knowingly inflict a lifetime of pain or suffering on any offspring.

Downs is not a genetic disorder usually and the pre natal tests for it are very good which gives the parents the choice of whether or not to proceed with the pregnancy.

Indie_Kid

krisskross wrote: »

Downs is not a genetic disorder usually.

It is - it's passed from mother to baby. How is that any different from my mum giving me the disease she did?

krisskross

sh1305 wrote: »

It is - it's passed from mother to baby. How is that any different from my mum giving me the disease she did?

"The cause or causes of Down’s syndrome are unclear, but the single biggest risk factor for the condition seems to be the age at which a woman gives birth. The older a woman is when she has a baby, the higher the risk of her baby having Down’s syndrome. The greatest risk (1 in 30) is associated with women who are 45 years of age or over."


It is not genetic.Genetics means one or both of the parents carrying the gene for the disorder. This is not the case with Downs Syndrome.

deeplyblue

krisskross wrote: »

I don't suppose he does more than any working mother with youngsters to look after.

Doubt any 'carer' actually gives the caree a full 5 hours a day, unless you count time spent watching TV together etc.

These two need answering separately, so let's start with "carer" bit.

I have just lost a dear friend, whose own ill health was left untreated because he felt he could not leave his wife in the care of any of the available respite homes. So what did he do that took up all that time?

Start with the fact that he was in his late 70s, and had never been very domesticated - he had few skills for coping with not being part of a team. That's just by the way, many people find themselves in that position.

Then reckon that whatever he was trying to do, he might be interrupted, "Ronnie?" He would put down the job he was doing. "Where's my hankie?" "In your hand, dear." "Oh." Five minutes later, "Ronnie?" Put down the laundry being put into the washing machine. "Yes dear?" "Where's my hankie?" "In your hand dear." And so on. Any and every task, from morning to night will probably be interrupted.

Then she needs to go to the loo. It's a performance because she's now bigger than he is, so getting her out of a chair is difficult. She has a stick to help her walk, but she forgets about it. Put it in her hand and she will keep relying on his arm for help, trailing the stick behind her like old teddy bear.

Then she has to be "toileted" - since she can't remember what it is she there's to do, and can't remember how to clean herself. Then she needs washing carefully, because she has a skin condition which means she needs extra care. After that there's the task of getting her back to the chair, and doing something. Takes maybe 20 minutes. More if there's dirty clothes, or sheets, or furniture to deal with. Five, eight, more times a day.

Trying to get her to eat is difficult - she always was a picky eater and now seems determined not to eat enough to stay alive. But she can be as messy as a small child, because she keeps forgetting exactly where the plate is, or what is on her fork.

She can still enjoy company. Old friends and complete strangers are greeted with the same cheerful smile. She'll tell you what she's doing - or more exactly what she's remembering. "I'm trying to sell my house, you know." She isn't, of course, but finding a way to keep that conversation going is a strain.

And her husband, who still loves her very much, watches as the present simply disappears entirely and the mind moves further and further into the past. She forgets the deaths of her siblings. If he mentions someone called "Donald" on the phone she hears and shouts for him, "Is that Donald? Ronnie, is that Donald?" and keeps on shouting until he comes. So, he has to put the phone down and go and reassure her that no, no one is stopping her speaking to her Donald, this is a different one.

And night time provides very little respite, as the same needs - toileting, a drink, turning over in bed, re-assurance.

And if this sounds like looking after a small child - well, it has some considerable resemblances. You're "on duty" 24 hours a day. The person being cared for has no realisation that they are being unreasonable. All they have is their own immediate environment, and their own immediate needs.

But there are differences too - many of the critical. Some are obvious. You are 25 and reasonably fit, and your 18 month-old infant is walking a little too carelessly and ends up on their bottom. Mostly they just plump themselves up and keep going. If they cry, you can pick them up, wipe their noses, and send them on their way.

Compare this with trying to pick up an adult who is heavier than you are. Suppose that every time they wobble, you realise that a fall might mean a broken hip. Every graze might bring on lymph-oedema. And certainly, if they end up in a heap on the floor, if nothing else, you wil have to call for help to get them on to a chair, into bed or into hospital.

You are also likely to be alone. Your children are now worrying about their children - or even their grandchildren. The person who helped you through all the earlier troubles is now the trouble themselves. Your friends are sick, dying or immobilised themselves and a few of your friends and relatives are very sorry, but they can't cope with the sight of a once elegant and stylish woman reduced to a shapeless bundle in the corner of the room.

And it will never get better. This is the biggest difference between caring for a disabled person, or someone chronically sick and looking after a child. The infant becomes a toddler, then a child and at every stage there is something to delight, something to share with others. And whatever is wrong (even the grand teenage rows!) is something where you can say, "They will grow out of this."

For many carers, the reverse is true.

The case I was describing above was that of looking after someone with Alzheimer's, where the burden falls often on the spouse, and where the only way is down. There are success stories, including in the field of mental health. But if you have MS, MND, or any other of the alphabet soup of degenerative diseases, the likelihood is that you are not going to see any marked improvement. Caring for someone with terminal cancer has no way out but down.

And then there are conditions like autism, where the severely affected person may not have a "degenerative" disease, but is equally not going to get "cured". They (unlike the elderly woman described above) may be able to deal with their own toilet needs, but they may need watching literally 24 hours a day, since they could harm themselves (deliberately or accidentally) at any time.

You don't "sit and watch telly" with someone who's 6 foot tall and broad with it, and walks round and round a room hitting the walls, the furniture and himself - and occasionally hitting you too - all the time keeping up a sort of sub-verbal rant of panic or anger or distress that no one understands. And who is quite capable of keeping it up for one or two or even three hours.

Even "sitting and watching telly" with someone can get to be a strain, if they are rarely interested in what's on the telly, and just want to read out the latest hate story from the Daily Mail. Then you get up to go and get a cup of coffee, "Do you want one?" "Don't mind if I do." And then they follow you into the kitchen, grumbling about everything. If you go to the loo, they're at the door wanting to know when you'll be out, because they're desperate. Imagine being trapped inside an episode of "Steptoe and Son" which just keeps repeating for a fortnight. Do not under-estimate the stress of dealing with someone who just keeps on and on, until you feel that you are being worked over with little rubber hammers.

"Caring" is not a matter of making the odd cup of tea, getting in the shopping and having a chat. The reality of caring often involves large amounts of someone else's body fluids in the wrong place. It can mean the risk of physical injury as you cope with someone who is too heavy, but has to be turned over every hour during the night. It can mean being at the wrong end of someone else's half-mindless violence, not like a child's tantrum, but like that of someone with the build of bouncer, who has forgotten that you are his wife, and thinks you're an intruder. It means knowing that you will never have another good night's sleep until the person you love most in the world is dead.

And all this for £53 a week.

db

krisskross

deeplyblue wrote: »

These two need answering separately, so let's start with "carer" bit.

I have just lost a dear friend, whose own ill health was left untreated because he felt he could not leave his wife in the care of any of the available respite homes. So what did he do that took up all that time?

Start with the fact that he was in his late 70s, and had never been very domesticated - he had few skills for coping with not being part of a team. That's just by the way, many people find themselves in that position.

Then reckon that whatever he was trying to do, he might be interrupted, "Ronnie?" He would put down the job he was doing. "Where's my hankie?" "In your hand, dear." "Oh." Five minutes later, "Ronnie?" Put down the laundry being put into the washing machine. "Yes dear?" "Where's my hankie?" "In your hand dear." And so on. Any and every task, from morning to night will probably be interrupted.

Then she needs to go to the loo. It's a performance because she's now bigger than he is, so getting her out of a chair is difficult. She has a stick to help her walk, but she forgets about it. Put it in her hand and she will keep relying on his arm for help, trailing the stick behind her like old teddy bear.

Then she has to be "toileted" - since she can't remember what it is she there's to do, and can't remember how to clean herself. Then she needs washing carefully, because she has a skin condition which means she needs extra care. After that there's the task of getting her back to the chair, and doing something. Takes maybe 20 minutes. More if there's dirty clothes, or sheets, or furniture to deal with. Five, eight, more times a day.

Trying to get her to eat is difficult - she always was a picky eater and now seems determined not to eat enough to stay alive. But she can be as messy as a small child, because she keeps forgetting exactly where the plate is, or what is on her fork.

She can still enjoy company. Old friends and complete strangers are greeted with the same cheerful smile. She'll tell you what she's doing - or more exactly what she's remembering. "I'm trying to sell my house, you know." She isn't, of course, but finding a way to keep that conversation going is a strain.

And her husband, who still loves her very much, watches as the present simply disappears entirely and the mind moves further and further into the past. She forgets the deaths of her siblings. If he mentions someone called "Donald" on the phone she hears and shouts for him, "Is that Donald? Ronnie, is that Donald?" and keeps on shouting until he comes. So, he has to put the phone down and go and reassure her that no, no one is stopping her speaking to her Donald, this is a different one.

And night time provides very little respite, as the same needs - toileting, a drink, turning over in bed, re-assurance.

And if this sounds like looking after a small child - well, it has some considerable resemblances. You're "on duty" 24 hours a day. The person being cared for has no realisation that they are being unreasonable. All they have is their own immediate environment, and their own immediate needs.

But there are differences too - many of the critical. Some are obvious. You are 25 and reasonably fit, and your 18 month-old infant is walking a little too carelessly and ends up on their bottom. Mostly they just plump themselves up and keep going. If they cry, you can pick them up, wipe their noses, and send them on their way.

Compare this with trying to pick up an adult who is heavier than you are. Suppose that every time they wobble, you realise that a fall might mean a broken hip. Every graze might bring on lymph-oedema. And certainly, if they end up in a heap on the floor, if nothing else, you wil have to call for help to get them on to a chair, into bed or into hospital.

You are also likely to be alone. Your children are now worrying about their children - or even their grandchildren. The person who helped you through all the earlier troubles is now the trouble themselves. Your friends are sick, dying or immobilised themselves and a few of your friends and relatives are very sorry, but they can't cope with the sight of a once elegant and stylish woman reduced to a shapeless bundle in the corner of the room.

And it will never get better. This is the biggest difference between caring for a disabled person, or someone chronically sick and looking after a child. The infant becomes a toddler, then a child and at every stage there is something to delight, something to share with others. And whatever is wrong (even the grand teenage rows!) is something where you can say, "They will grow out of this."

For many carers, the reverse is true.

The case I was describing above was that of looking after someone with Alzheimer's, where the burden falls often on the spouse, and where the only way is down. There are success stories, including in the field of mental health. But if you have MS, MND, or any other of the alphabet soup of degenerative diseases, the likelihood is that you are not going to see any marked improvement. Caring for someone with terminal cancer has no way out but down.

And then there are conditions like autism, where the severely affected person may not have a "degenerative" disease, but is equally not going to get "cured". They (unlike the elderly woman described above) may be able to deal with their own toilet needs, but they may need watching literally 24 hours a day, since they could harm themselves (deliberately or accidentally) at any time.

You don't "sit and watch telly" with someone who's 6 foot tall and broad with it, and walks round and round a room hitting the walls, the furniture and himself - and occasionally hitting you too - all the time keeping up a sort of sub-verbal rant of panic or anger or distress that no one understands. And who is quite capable of keeping it up for one or two or even three hours.

Even "sitting and watching telly" with someone can get to be a strain, if they are rarely interested in what's on the telly, and just want to read out the latest hate story from the Daily Mail. Then you get up to go and get a cup of coffee, "Do you want one?" "Don't mind if I do." And then they follow you into the kitchen, grumbling about everything. If you go to the loo, they're at the door wanting to know when you'll be out, because they're desperate. Imagine being trapped inside an episode of "Steptoe and Son" which just keeps repeating for a fortnight. Do not under-estimate the stress of dealing with someone who just keeps on and on, until you feel that you are being worked over with little rubber hammers.

"Caring" is not a matter of making the odd cup of tea, getting in the shopping and having a chat. The reality of caring often involves large amounts of someone else's body fluids in the wrong place. It can mean the risk of physical injury as you cope with someone who is too heavy, but has to be turned over every hour during the night. It can mean being at the wrong end of someone else's half-mindless violence, not like a child's tantrum, but like that of someone with the build of bouncer, who has forgotten that you are his wife, and thinks you're an intruder. It means knowing that you will never have another good night's sleep until the person you love most in the world is dead.

And all this for £53 a week.

db

I was actually answering a post from someone who posts on here several times a day so my response was pertinent to her situation rather than someone I know absolutely nothing about.

deeplyblue

Easy on! It's not being stupid, just being understandably confused.

Down's Syndrome is when you get an extra chromosome in the process of the egg getting fertilized. It's almost a copying error. But chromosomes are where we find genes, and so it's hardly surprising that some people think that Down's is "genetic".

The ignorant ones are the ones who think it's something you catch, or develop in childhood. And even they are ignorant - I hate it when people confuse ignorance and stupidity.

[This to those like sh who don't know:] For the difference, think of this way. Suppose you have a whole bunch of paragraphs, which you need to copy and paste from an old document (parent) into a new document (child). You can do the copy and paste action perfectly, but if one of the paragraphs contains some serious spelling errors, then those errors are going to be there in the new document. This is how genetic conditions, like Huntingdon's get passed on.

Suppose, however, that the text is just fine, but that something goes wrong with the copy and paste operation. One of the paragraphs get put in twice. There's nothing wrong with the text, it's just that's it's there twice, when it should be there once. That's what happens with Down's.

(And, yes, I know that's grossly over-simplifying the process, but I think it shows the differences!)

The older the parents get (and I think it can be a function of the father's age too), the more likely it is that the reproductive system will make a hash of the copy and paste instruction.

Age has, however, little to do with the passing on of a genetic trait - whether it's red hair or Huntingdon's.

There is always another possibility, which is that of introducing a new "spelling error" of their own, and create a slightly altered version of the "text" in the new document. This is "mutation" which gives us good things and bad things. Mostly bad things, which is why so many conceptions end up in miscarriage, because the "bad thing" made the foetus non-viable. But that is not what happens with Down's.

db

krisskross

deeplyblue wrote: »

Easy on! It's not being stupid, just being understandably confused.

Down's Syndrome is when you get an extra chromosome in the process of the egg getting fertilized. It's almost a copying error. But chromosomes are where we find genes, and so it's hardly surprising that some people think that Down's is "genetic".

The ignorant ones are the ones who think it's something you catch, or develop in childhood. And even they are ignorant - I hate it when people confuse ignorance and stupidity.

[This to those like sh who don't know:] For the difference, think of this way. Suppose you have a whole bunch of paragraphs, which you need to copy and paste from an old document (parent) into a new document (child). You can do the copy and paste action perfectly, but if one of the paragraphs contains some serious spelling errors, then those errors are going to be there in the new document. This is how genetic conditions, like Huntingdon's get passed on.

Suppose, however, that the text is just fine, but that something goes wrong with the copy and paste operation. One of the paragraphs get put in twice. There's nothing wrong with the text, it's just that's it's there twice, when it should be there once. That's what happens with Down's.

(And, yes, I know that's grossly over-simplifying the process, but I think it shows the differences!)

The older the parents get (and I think it can be a function of the father's age too), the more likely it is that the reproductive system will make a hash of the copy and paste instruction.

Age has, however, little to do with the passing on of a genetic trait - whether it's red hair or Huntingdon's.

There is always another possibility, which is that of introducing a new "spelling error" of their own, and create a slightly altered version of the "text" in the new document. This is "mutation" which gives us good things and bad things. Mostly bad things, which is why so many conceptions end up in miscarriage, because the "bad thing" made the foetus non-viable. But that is not what happens with Down's.

db

I explained but s/he still insisted s/he was correct. I do expect University Students to be able to understand when it is explained fairly simply.

deeplyblue

Oldernotwiser wrote: »

Believe it or not, there are plenty of people who have never claimed a penny in unemployment benefits or sickness benefits in the whole of their working lives. Being on and off benefits may not be anybody's fault but it's hardly a normal way of living.

It's much more "normal" now than it used to be. People who have just one job, or who only leave one job when they've got another lined up are going to be in the minority soon. That was part of the Thatcher revolution. Employers now find it easier to work with part-time or casual staff. And the businesses are more likely to go broke with banks only interested in the next quarter's results.

Casualisation, agency work and frequent rounds of redundancies are going to make it much more common to need benefits to see you over the "gaps".

db

krisskross

deeplyblue wrote: »

Employers now find it easier to work with part-time or casual staff. .

Do you not think part time working is due to the tax credit system where part time work is often topped up to a full time salary?

kingfisherblue

Just a couple of points about some posts about two pages ago.

Trikes - thanks to the posters who suggested trying a trike for my son. He did have one from Whizzkids. Originally it was made for a friend's child, but (with Whizzkids' permission) was passed to my son when she no longer had use for it. He had it for about a year, but it had to be kept at grandparent's house as it was so large - we already have some disability equipment and there was just no room for it at home. My son has problems with hypermobile joints, so he found it quite hard to pedal. It caused pain and he became very tired. So we have tried a trike, but it wasn't suitable for my son. Thanks for taking the time to post your suggestions though - much appreciated. (the trike has now been passed onto another child who can make better use of it).

Somebody said about whinging and having a 'my disability is worse than yours' type of debate. I can't remember the exact wording. Just in case that was in response to my rather long post about some of the caring tasks that I face each day (and I realise that the poster might not have meant me), I was responding to the comment about not giving the cared for person five hours care a day unless it included watching TV with them. I agree that this is not a competition. My point was merely that nobody knows each others care load unless they know the people concerned. Some people do require less care than others, but equally, others need more care due to the nature of their disabilities and their ability to carry out personal care.

Regarding Down's syndrome - it is not usually a genetic disorder. I can state that quite categorically. There are three types of DS. The most common, which my son has, is Trisomy 21. Approximately 95% of people with DS have this type. 2% of people with DS have mosaicism. The remaining 3% have translocation, which is the only genetic type of DS. This is because the chromosone is affected by genetic material from both the mother and the father.

When my son was born twelve years ago, there was only one family in England that had two children within the same biological family with trisomy 21 (according to the DS association). They were two sisters, who happened to live in my town. There were no recorded cases of any related people having children with mosaicism. There are, of course, a small number of families who are affected by translocation DS.

It is not always the mother who passes the additional material onto chromosone 21, causing DS. In my case, I was told that it was 80% chance it was from me and 20% chance it was my son's dad who was at fault. We were offered the chance of tests to determine who had passed on the additional material, but neither myself nor my (now ex) husband felt that it was necessary to know. We were keen to find out, however, if either of our other two children were likely to have children with DS. They have no more chance than anybody else, as DS is not a genetic disorder.

Regarding medicals and benefits - I stated much earlier in this thread (I think it was this thread, it might have been the one on the benefits board) that I am not in the least concerned about a medical for my son. I also stated that I appreciate the benefits available to both him and me. They will never take away his disabilities, but the money does help to pay for the additional costs caused by his disability and to help support my family whilst I cannot work due to my full time caring role. I don't take it for granted. I know that it could change under different governments. But I appreciate the help that I get from the taxpayers of this country. I was a taxpayer once and hope to become one again in the future. All of my family are in work, including my daughter and ex husband. The only exceptions are my mum and my ex's parent, who are all retired after working all their lives. Even if this wasn't the case, though, we live in a country that recognises that some people can't work due to disability or caring responsibilities, and that allows for additional costs of disabilities. We should all be grateful, despite the changes that are coming up.

Money has to be saved from somewhere. We might not agree that targeting disabled people is right, but it is not only this sector that is being checked. I'm sure that we all get annoyed when people claim disability benefits when they are perfectly fit (such as a window cleaner that I read about a couple of weeks ago - over £71,000 in benefits over a period of a few years, but as fit as a fiddle. I don't know if this was a local case or if I read it in the national papers, but it is the small amount of frauddulent claimants like this who give everybody else a bad name.)

If people are found to be no longer eligible for DLA, when previously they have received it, there will be appeal processes. Not pleasant, and very stressful, but this will happen and we need to accept that the rules are changing.