DLA and self image (sorry, a bit long)

[cory]

As some of you may remember, dd is rather badly affected by joint hypermobility syndrome: she has chronic pain and is very accident prone. She can walk short distances with a stick, but needs a wheelchair to get around. On bad days she can't get out of bed. The most recent development is that her wrists have gone, so she can't hold a pen. She is 11 and her dream is to be a writer. The OT suggested a laptop with a voice recognition programme, which is fine, except they cost money. Probably quite a bit of money.

The treatment agreed on with the doctors is a combo of physio and pacing- never overdoing it in one day. Basically, a whole day at school is a full day's work for her. If she then has to go into town on the bus to buy shoes, or to keep a hospital appointment, or to weekly physio, then that throws the whole programme and she is likely to be too unwell to go to school the next morning. We haven't got a car and I can't drive anyway, so we are talking taxi journeys.

At week-ends, she needs lots of time to recover. A quick trip out by car (we could order a taxi) would be fine, but any outing on public transport is likely to exhaust her and set her back for the following week. Again, taxis cost money. So we're basically spending our weekends at home because we can't risk tiring her out.

My earning power is also greatly limited by the amount of care that dd requires. Somebody needs to be in during her frequent medical absences and to take her to doctors and physio.

So dh and I thought it would be reasonable to apply for DLA, seeing that we have all these extra costs that parents of NT children don't have, and seeing that dd's quality of life could be greatly improved by a few extra aids.

The O.T. I spoke to seemed to see my point, but she said the doctor in chareg of dd's treatment is unlikely to agree to support the application as she will be afraid that this will damage dd's self image.

We have tried once before and got turned down- no doubt because the paed she saw then wasn't supportive.

I feel like giving up again. So I'm not a caring parent trying to help my dd to get as much out of life as I can? Sounds like (once again) I am the problem. She would be absolutely fine, if only she didn't have these selfish grasping parents who were bent on destroying her self image for the sake of 17.75 a week.

Yeah right- she could sit at home and watch television and rejoice in the fact that she is not officially disabled.

Am I the only person who thinks that self image comes from the things that you achieve? And that aids are what you put in place to help children with impairments to achieve as much as they can? That if dd could carry on writing her book and have a chance to socialise and maybe get a bit of fresh air now and then, that might actually have a more lasting impact on her self image than any label assigned to her by the Benefits office?

And am I the only one to think that there is nothing shameful in being disabled??? The way these doctors talk you would think that dd would just curl up in a heap of shame and not think life worth living if somebody used the D word in her presence. Dd, as it so happens, knows that her limitations are there whatever name you call them by.

Or am I being out of order? Is it worth it for a small sum of money that would really only pay for the cost of one round trip to the hospital? Am I taking this too personally? It does feel a bit like nobody is prepared to recognise what I do as a carer- obviously, if we are not allowed to call dd disabled, then we can't call me a carer either? Am I selfish? But I did want to spend the money on making her life easier.

Again, what the doctors tend to say is 'but your dd's condition may improve; if she is once labelled, then she will feel less motivated to get well'. Yes, but we've lived like this for four years - how long do we have to wait for pigs to fly? The condition itself can never go away- we can't go back to the moment of conception and change her genes. Perhaps one day her strength will improve, but isn't that more likely to happen if she can get the help to be active?

Why is it only dd's self image that is supposed to be so particularly fragile- or should nobody be getting DLA?

Sorry about long rant. But we need the money and if the doctors won't back us I don't suppose we have a chance of getting it.

the doctor is insane

your dd doesn't even need to know ffs

we claim DLA for dd1 - it doesn't make her more disabled, I don't think she even knows she gets it

You need to complain to someone. I don't know who. Maybe someone will know.

But this 'labelling' thing is ridiculous. I have never heard anything so ridiculous in my life. I can barely express my contempt and amazement for its ridiculousness.

Why will she feel less motivated to get well if she has a bloody laptop?

god the insanity

is your gp supportive? can you not go and talk to him?

I have never met a paed like this. He is bonkers

GET A REFERRAL TO ANOTHER DOCTOR!

Because your one is talking bollocks.

Your daughter's quality of life and mobility are seriously affected by her condition, so she definitely has grounds for a DLA award.

She and you deserve support and help in getting any award she's entitled to to help her improve her condition.

You are NOT out of order at all.

and it mght not be just £17.75

ours is more

it makes a lot of difference

yes, your daughter may qualify for high rate mobility/care.

but Capp's is a good suggestion. explain to your GP what is going on and even the practice manager at your srugery may be able to help you more.

Unfortunately the doctor I was talking about is not the GP but the specialist paediatrician in charge of dd's treatment at the hospital- the OT is part of her team and has implied she will not be willing to go against her decision. The GP is well meaning but doesn't know her case well enough to put it in the way that the paeds could if they wanted to. The treatment in itself has been very good for her, so can't really ask for her to be referred just for the sake of the DLA.

Are school supportive? Perhaps if you got GP,School and anyone else you can think of onside it would detract from the bollocks your paediatrician is spouting. He is clearly insane - there must be some way of by-passing him. You must be entitled.

Can you get a telephone appointment with the consultant to discuss support for a DLA app? Everything you have said is perfectly reasonable and her self-esteem is surely more in danger from worrying about how much she costs her family.
It may be simpler to sort out than you fear, that maybe the OT has got it wrong, or maybe nobody has ever argued with consultant before hence it has become the accepted stance for that office.

Am I remembering right in that you can get someone from DLA to come out and assess? Can't imagine that would be too tempting though.

Cory, I'm so angry for you and your dd. Having some extra money can help you to become more mobile, rather than labelling your dd as disabled.

Please apply. My dd is much younger than yours, but has very similar problems. Although our application for DLA wasn't all plain sailing, we did get it in the end, and at a damn good rate (high rate mobility until Feb next year - which we use to fund a Motability car, and middle rate care). It comes to a lot more than £17.75 per week, and there is every chance that your dd could get the same, if not more.

I haven't read all the replies fully, but did you know that you can specify who the DWP ask for information about your daughter? It doesn't have to be the "top dog".

I would urge you to get professional help with filling in the form though, and keep a copy of everything. I did it myself, and found it pretty draining. It highlights everything that your child cannot currently manage... but there is a section of the form that asks how the extra money might help your child to do more.

I see DLA as a benefit that enables, not disables. Your dd is clearly entitled to this benefit too, so don't let her specialists fob you off like this.

really angry about this
DLA is fab and enables us to access things for DS2. He has horse riding once a fortnight for example. And, as others have said it is much more than £17 per week.

You should persue this. And DD does not even need to know so your specialist Paed is talking bollocks

agree with everyone else. have had a taste of the "not labelling" malarkey myself (fortunately only from a GP rather than a paed). tbh I think this "not labelling" malarkey is pretty poisonous - like they just wants kids to sod off and get themselves better by will power.

What a pile of poo!

I'm an OT and I;m horified to read "The O.T. I spoke to seemed to see my point, but she said the doctor in chareg of dd's treatment is unlikely to agree to support the application as she will be afraid that this will damage dd's self image." - how about that OT ASK you DDE how she feels about it!

Also, if she is still at school the laptop and software could be funded by the LEA.

What a pile of crap - I hate the restrictions placed on the resources I can offer my patients, but your DD isn't even getting half the help she could. Would she want to use a wheelchair to manage fatique, ie to allow some mobility further from home, what about an electric chair (for the OT and consultant if DD didn't want one!)

disability LIVING allowance - they are not letting your DD live live of her own choosing - I know you probably don't have the energy, but fight the system on this one, DD can achieve her dreams if only she gets some help

disability LIVING allowance - they are not letting your DD live live of her own choosing - I know you probably don't have the energy, but fight the system on this one, DD can achieve her dreams if only she gets some help

opps! buty I am so angry!

might help DD in the short term, also is the OT going to make her a splint to enable her to maintain wrist function for writing?

God, for a slice or 6 of cake I'll come and assess you and DD and help you fill in you forms!

Thanks everybody for being so wonderful and supportive. I just wanted to hear that I am not selfish or grasping or willing to sacrifice dd's mental wellbeing for money.

The OT did promise that she would take the matter up with the paed, so I'll wait for a bit and see if I hear anything.
The thing is, the specialist is not insane or a bad doctor or any of those things- in fact, she and her team have done wonders for dd. So I do really want to have her on my side. And they are the people who really know dd's condition; nobody else could provide that sort of inside knowledge. And I really don't want to rock the boat with her because they're the first people who've actually done dd any good.

But for the DLA side, I don't think it helps that she is quite a well known specialist in getting children with ME back to normal by using CBT- and of course that's quite a different scenario from dd's. I thought the small amount of CBT that dd had was good and helpful, but it obviously can't change her genetic condition. And to be fair the doctor never pretended it could. But that might just explain why psychology could be a big part of how she thinks. Or - yes, you are right Buckets - of how the OT expects her to think. We may be misjudging her. I'm just so fed up with this tired line of 'musn't perceive herself as disabled'; we've had that from every doctor dd has ever seen.

just for the record dd1 is really proud to call herself 'disabled'

she tells people straight out that she is and is always amazed if they don't know what she means, eg if they are children who don't understand the word

she sees that as their problem, not hers

she doesn't see it as a barrier or a label, she sees it as part of who she is

cory I so don't want you to be put off applying. That was a really silly comment from the OT.

Your daughter doesn't even need to know you're applying; as the parent, YOU apply. And as another poster said, YOU specify who the medical person is to give them further information, so obviously it's usually the person most involved in their care - but if you feel they'd be negative then you can specify another person - the GP or OT, etc.

DLA is awarded on the basis of the information provided, not necessarily who provides it.

It's not up to your paed - this one is in the hands of other people!

I complete DLA forms sometimes with people as part of my current job so I do have a bit of experience, if I can be of any help please just say. Though I work with adults with mental health problems so not setting myself up as an expert here!

But do apply. And remember to describe DD on her worst day; don't think, oh I won't put that in because sometimes she's ok with doing it; if there are days when she can't, then you have to put that in, otherwise you're not giving them a real picture of her difficulties

Good luck!

Sorry Ipod, missed your posts before.

Dd already has a wheelchair, which we bought for her against the advice of the previous paediatrician (the present team are happy to for her to use it to get to school as I cannot drive). Before that we had one on loan from the Red Cross and before that (in the days when I still listened to doctors) I was sometimes reduced to carrying her to school on my back.

But she still gets very tired going on the buses and trains; the rattling hurts her joints and her stamina is not very good. To get to the physio is a 2 hour round trip on the bus; in a taxi you can do it in under an hour- big difference.

Cappucino, good to hear that there are other children who are not ashamed- makes me feel I'm not bringing my dd up to be a freak.

Ah! Think I can almost grasp your specialist's reasoning but it's not doing you or dd any favours. I'm willing to concede she isn't as insane as I thought but she doesn't seem to be willing to adapt her practise to different patients. Is there any way you can include some of her knowledge whilst making it clear she has reservations about labelling??