To think my friend should not be receiving a disabled carer's allowance?

[TiggyR]

I have just found out that my friend receives £500 a month as disabled carer's allowance for her teenaged daughter. She has a genetic condition which I will not name for fear of someone recognising her in this post. She has had various health and physical developmental problems in the past admittedly, which led eventually to a diagnosis. Once diagnosed the problems were dealt with and are now under control. The bottom line is that she looks, and sounds like any other teenager, she is in mainstream school, taking mainstream qualifications, she has no sensory problems, no mobility problems, no communication problems. She is not considered to have any major learning difficulties or behavioural ones, and is of normal intelligence. she receives a bit of SEN help, no more than my own child who is mildly dyslexic. She does not require any specially adapted items for the home or travel, she is not in pain, she goes out and about independently and her parents are not unduly inconvenienced or limited in their lifestyle by her condition.

Her only real issues are social and emotional ones, she seems somewhat immature and finds it hard to make close and lasting friendships with girls her own age. They all seem so much more sophisticated in comparison, and she can sometimes struggle to understand subtle social signals, read body language etc. Having said that she is outgoing and talkative, goes to parties, sleepovers, joins clubs etc and lives a perfectly normal and fulfilling life.

Loads of teenagers have those issues to contend with but because they don't have a label attached to them their parents don't get money for it! My friend now seems happy to define her child as 'disabled' whereas I have known this family for years and previously I feel they would have baulked at the word. I can't help feeling a bit cynical TBH.

I don't mean to be uncharitable. I know it devastating for them to discover that their child had to deal with a lifelong condition and all the negative things that go with it, and I don't blame them one bit for taking the attitude that they'll claim what they are entitled to. I know I would, as a way of softening the blow, and to be able to give her treats and pay for hobbies etc, when she's feeling a bit lonely or left out.

I'm just not sure I'm comfortable with the 'disabled' label and the notion that she needs extra care, requiring extra money. She may always be at a bit of a disadvantage socially due to her condition but she will be perfectly capable of living independently and doing a normal job as an adult. I'm not questioning their motivations, rather the assessment procedure and the criteria in place here .....am I being mean?

TiggyR - people do get defensive on AIBU threads: that's the name of the blimmin' game.

Yes TS, I agree. IF she is getting money to which she is not entitled. IF.

OP does not know this to be the case. She assumes, based on the fact that the child 'looks normal'.

Actually they have a very similar income to ours and neither of us could say we struggle financially, so I have no issues with jealousy. It's difficult to get across just how high-functioning and 'normal' this girl is, which is why I'm a bit mystified, tbh. I know them very well so I don't think I am lacking in any info about her condition and what she needs and doesn't need. I am under no illusions about how difficult social and emotional issues can be to live with btw, obviously without actually living with those issues myself I think I understand as well as anyone who is not directly involved can be expected to..

I'm afraid YABU. Sorry.

My DS2 appears quite normal, untill he speaks. The only noticeable difference when looking at him are his hearing aids. He also has an incurable genetic condition. He is doing well in school, with support and is very sociable etc.

What other people don't see is the amount of never ending hospital visits, with all the costs involved, the fact he is up several times a night with cramp in his feet due to his condition. The list is actually endless but what I guess I'm trying to say is that I don't always discuss it with even my closest friends for fear of sending them to sleep!

Just before Christmas I took the decision to apply for the CA as his appointments make me a very unreliable employee.

Quite where the £500 comes from however I don't know unless she is adding all the help together.

You ask if you are being mean at the end of your post TiggyR. I am sure you are well aware that you are being mean...

As others have said, Carers Allowance alone would in no circumstance add up to £500 per month. It is a set rate with no means test. It is only paid when the cared-for person is in receipt of DLA at the middle or higher rate. This is not awarded arbitrarily and is highly unlikely to be undeserved.

And no, it is none of your business what your friend receives, although you are clearly no friend to her anyway!

I think there are 2 options - you accept that she is entitled to the help and accept that there may be aspects of her daughters condition of which you are not aware (continence issues for example are generally kept quiet) OR you report her and let those who are in a position to make a decision based on a full possession of the facts. I'd do the former.

Sorry, forgot to add. If she is claiming wrongly then YANBU, but tbh claiming for the DLA in the first place is a mammouth task and I am always gobsmacked that people manage to cheat a system that is backed up by medical professionals.

Social and emotional problems, whether you like it or not, ARE communication probles. I don't know about what benefits are available or the rates payable, but I do know that this kind of benefit only gets paid after a lot of investigation. All sorts of professional people will have been asked to complete an extensive questionnare about the person concerned. Doctors, the school, others involved in managing her condition or education, will all have played their part. Or are you saying that all those people are also on the fiddle?

If you truly think she is getting something she is not entlted to, then tell someone. otherwise, butt out. I certainly don't tell all my friends and family every detail of either my Dh or DC medical conditions or our finances. Thank god I don't because at least I know my family circumstances are not going to be blabbed here or anywhere else by 'friends' like you!

Well if the girl comes across to the outside world as high functioning and normal then its seems like her parents along with her doctors, are doing a very good job at keeping her condition under control, probably helped by the money they get for her.

Would you prefer to see the girl not functioning as a normal child? Would you prefer to see her parents struggling and stressed? would that make you feel better about the money they get?

cant think of a single thing to say other than YABVU, and a really shit friend.

Thank you slightlycrumpled, that puts a very easy to grasp and much appreciated slant on things, and gives me much food for thought. And as you are coming at it from the angle of someone in my friend's position I really appreciate that you addressed the question in such a friendly and non-preachy way.

Shinyshoes, I don't want to do anything about it. I have no intention of reporting her. I know many will refuse to believe this no matter what I say but I don't have any jealousy issues over the money. Would I have what they have for any amount of money? No.
I have no idea whether or not she is playing the system or whether she is getting more than she is entitled to. I wouldn't dream of asking. I was just struggling to see how her child could be judged 'disabled' when compared to other much more severely affected children needing obvious extra care, with an obvoius financial impact, whereas in my friends case I can't really see one. As I said, slightlycrumpled has put things in better perspective for me.

Sayithowitis, Yes I know what you mean about the communication thing, but I meant in a more literal sense!

A child looking NORMAL is no indication as to their needs, FWIW I have a child with cystic fibrosis she recieves DLA and I recieve carers allowance for hwer.

Many of my friends did not even realise that she has any problems (until emergency admission to hospital for a bowel obstruction 2 weeks ago!), BUT the time and CARE required EVERYDAY to keep my dd at at level where she is able to LOOK "normal" and KEEP HER HEALTHLY is considerably over an above other children of her age.

YABU not all illnesses and disabilities are the same, as she gets older my dd will also have good days and bad days, these are all taken into account when her assessments are done.

I hope y friends don't judge me the way you appear to be judging your friend!!!

YABVU.

What is it that you don't like about this
disabled 'label' that you give her?

Is she not disabled enough in your opinion to warrant DLA and CA?

Glad you say she leads a happy and fulfilling life, shame about her mum's choice of 'friend' though.

You are being very unreasonable and I really don't see how you can call yourself her friend.
Just because her DD appears "normal" doesn't mean that she doesn't have special needs. To look at my DS you would never think he had special needs but he has dyspraxia, he has regular trips to speech therapy, occupational therapy, physiotherapy, and the podiatrist. He has daily speech therapy and occupational therapy at school and physiotherapy at home. I would give up the DLA and Carers Allowance that we get for him in a heartbeat if it meant that he was "normal" and most parents with disabled children would too.
You also don't seem to realise how emotionally draining it is to fill in the DLA forms, it makes you realise just how many problems your child actually has. You don't just get DLA because you say your child has special needs, the benefits agency write to all the health professionals involved in your childs care and gets reports from them detailing the extra care your child needs. The decision to give a child DLA is based mainly on these reports not on what you write when you fill the forms out so it is highly unlikely that your friend is claiming something that she shouldn't.

Thanks Metalmummy, again, like Slightlycrumpled you have opened my eyes to things I never considered. I have for the first time actually considered how the impact of such regular and numerous appointments with the healthcare professionals could, for example, make it difficult for you to hold a job outside the home, with the constant interruptions. I think initially my assumed definition of both a 'carer' and a 'disability' were too narrow. I apologise unreservedly.

Corky, I didn't give her the label of 'disabled', that's the whole point. I questioned whether the term applied in this case. As I am finding out, my definitions were far too narrow, and I see that I was indeed BU! Or just naive and blinkered.

ahhhh, the power of mumsnet......

gracious of you to back down tiggyR

and gracious of you to say so!

tiggyr I was going to come on and join in with everyone else in saying you YABU but it looks like you've been able to see the other side of the situation.

I get CA for looking after my daughter who also to the outside world looks and acts completely normal and in time I fully hope that she will be a high achieving adult. But behind the scenes there is a hell of a lot of work put in to keep her that way and that is what I get the CA for.

I too have an issue with describing her as 'disabled' but unfortunately that is the catch-all title that has been given to the DLA payments

I guess the moral of the story is don't judge a book by its cover

Must just add, someone earlier said don't ask AIBU if you are not prepared told you are. Well I was, and I am. I would only pose the AIBU question to get help with understanding the answer to a genuine question, dilemma or concern that I can't square in my own mind. I would not use it as way of venting bile on a subject without being prepared to listen to counter-argument. I am grown up enough to do that by myself without hiding behind AIBU grin]. I can live with being hung drawn and quartered if it means I am forced to think more carefully about my own attitudes, and change my opinion as a result. That has happened in this case.

OK, I've only just seen this thread so I apologise now for not wanting to read through the whole thing. Just a quick response which might put things into persective (and sorry if someone else has pointed this possibility out).

My friend has a 2yo with a life-threatening heart condition. Since having an op fairly recently she?s fine for the time being. My friend doesn?t ?need? (financially) to work, so they?re not losing out by her staying at home to look after her dd (though they?d struggle to find a nursery that would take her if she did).

But she gets this disability carers allowance, about £200 a month. She know full well that some people would frown at this, but her reasoning is that when (god-willing!) her dd grows up, she will really struggle to get life insurance, a mortgage, all the things we ?healthy? people take for granted, and the allowance all goes into an ISA that will be there for her future.

So maybe your friend has a similar practical approach to what might be a shitty future for her dd.

I think you are absolutely right Songbird, and I don't blame her.

It?s impossible to imagine what it?s like isn?t it? The hassle my friend had to go to just to get some flu jabs (or something similar) for her dd was ridiculous. Our MP (crazy but I like him Lembit Opik!) got on the case in the end. A similar problem with her needing to get oil central heating installed (her dd would go completely blue at the drop of a hat). She campaigned and campaigned to get the health authority etc to fund it, and eventually beat them down, and two separate offers!

Makes you wonder how many people would just give up! And it will never end . I?m not trying to get at you, I know you?ve been convinced there are wider issues than you (or certainly I0 might have first thought

I) even!

the op proves why telling your so called "freinds" about your problems is never a good idea.