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Here are some suggested organisations that offer expert advice on special needs.

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Here are some suggested organisations that offer expert advice on special needs.

SN children

Turned down for dla

57 replies

SparkleRainbow · 26/01/2011 18:50

What a surprise, I saw it coming, but the reason given is upsetting and just wrong. They said they acknowledged ds's care needs with washing dressing incontinence, but have decided they are not that different from a normal 7 nearly 8 year old, they also acknowledged physical disability but said that he is not in danger of falling, despite 9 hopsitalisations in last 12 months, multiple calls to school due to falling each week, school's risk assessment describing the falling etc and injuries which result...... Feel like crying. I have rung them up and been told to request a reconsideration, then go to appeal if that is not satisfactory. What do you think, feel like giving up, no-body else cares about my ds anyway, why should I expect or hope anyone to help, no-one ever does.

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Taysh1109 · 26/01/2011 18:58

:( That's awful.

Don't give up hope. Definitely appeal it.

I'm so sorry that you feel nobody cares about your DS, that's so sad. It's a reason to fight even harder for him though. Put it to the side for a while then re-attack it later on with a clear, fresh head.

Big hugs... sorry you're feeling so down. Have a good cry, always makes me feel better!

Peachy · 26/01/2011 19:07

Hugs SR

You know what though this happens a lot- not OK but don;t take it eprsonally. happened to ds3; just asked for it to be looked at agin, they said HR.

That's your next step: ask for it to be looked at again.
TBH it's a standard 'joke' that 50% of DLA claims are chucked out like this at random. Please don't give up just yet.

cansu · 26/01/2011 19:32

Please don't give up ; they count on it. I think this is a kind of technique as many parents feel so despondent after filling in mammoth form and still being refused. I was turned down and went to appeal in the end and won easily. Don't let them wear you down.

SparkleRainbow · 26/01/2011 19:39

Peachy did you go from nothing to higher rate? It just seems so bonkers, they had all this evidence about all the falls, and his poor gross coordination, and the dangers to his health and life threatening dangers associated with him falling, to still come back with "Not at risk of falls" ......I just don't understand, and can't help thinking there is no point in fighting it, the dla dr who came made me feel like a sponger. But then I read what people write and think maybe I shouldn't give up, I just don't know. I am exhanusted by the fight, doctors, schools, la, now dla.....

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Peachy · 26/01/2011 19:42

Yep, for a non verbal ASD kid who was still in nappies.

And I totally get where you are about the fighting: you have to pick your battles to keep sane. The first step though having it looked at agaiin is simply a case of a letetr and any up to date reports if they happen to come in.

HecateQueenOfWitches · 26/01/2011 19:42

Agree. don't give up. I think they refuse loads just in the hope that people will give up!

Appeal.

bigcar · 26/01/2011 19:43

another one here saying don't give up. Have a bit of a cry of you want but accompany it with a glass of wine and some chocolate too.

Phlebas · 26/01/2011 19:46

It's definitely worth going for a reconsideration. We didn't give them any new information/evidence, and were upgraded from middle to higher rate. I have a friend who was awarded HR from nothing & backdated to diagnosis which was 18 months

SparkleRainbow · 26/01/2011 20:02

I have requested the copies of the reports which they used in their decision, so I can see what has been written by whom. I think this comes from the dla dr who couldn't examine ds as ds was hysterical at his presence, also he was very ignorant of ds's condition and how it affects him. How long do I have to go for reconsideration as opposed to appeal? I am picking up a gp letter in the next few days to support fight against la and moving him to a disabled access school, so I might be able to include tis info if it is helpful. But then, just another knock back....not sure I can keep taking the hits.

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SparkleRainbow · 27/01/2011 09:40

I am so down about this this morning, if anyone has got the time or the inclination, talk to me about reconsiderations and appeal.

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WHAThisFlappinNotFlyin · 27/01/2011 09:58

Hi sparkle,try not to give up,I can imagine how deflating it must feel to be turned down for something you know you are entitled too,do you have a family support worker or a social worker who can stand for you at appeal? Or are you going for a paper appeal? X

Thecarrotcake · 27/01/2011 09:59

I don't know anything about reconsiderations.
But I can give a good hug!

I wonder if you may be able to prove the risk of falling through the medical records of the A+E trips ? Etc.

Don't give up, this is a battle worth fighting :)

meltedmarsbars · 27/01/2011 10:04

Do you have a pead who can write on your behalf?

SparkleRainbow · 27/01/2011 10:08

Thank you,

I have included evidence of 10 hopsitalisations in last 12 months due to falling, plus school risk assessments which talk about trying to stop him from falling, not sure what else to do. We don't have afamily support worker or social worker at all, so I will be appealing on paper. Think I might ring ds's physio to see if she will write soemthing about his physical instability, but am I doing the right thing. It was so distressing to fill in the forms, it took me weeks to collect everything, and despite everything he is my perfect little boy, and I love him so, I want him to be ok, I want the best for him, is this the best? sorry having real crisis about this.

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SparkleRainbow · 27/01/2011 10:10

I thought they wrote to the Paeds we have, but maybe they didn't, or maybe the paed's wrote a load of rubbish......I don't know!

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chuckeyegg · 27/01/2011 10:12

No as the other say you must ask for a reconsideration, I use to help people complete AA form as part of my job and sometimes they get it wrong.

Try and give any extra information that will help the person who looks at your claim again. Think about the bad days with DS.

If found a draft letter on the RNIB website but it gives you an idea of structure of the letter. here

WHAThisFlappinNotFlyin · 27/01/2011 10:12

Ok when my Sid had to do a paper appeal on the grounds of anxiety and depression what she done was write a letter fully "going in" on her condition and the effects,the impact it has on her,who she could have been without this condition Then also got a letter of support from her friend saying how she is effected,no support worker,or anything just good old honesty and not holding back she got LRC and LRM backdated to when she 1st applied,she doesn't recieve it anymore as she is coping much better now,but it really is worth the fight!

sugarcandyminx · 27/01/2011 10:19

I think the chances of success at appeal are much higher if you go in person, rather than doing a paper appeal. I don't know what support is available in your area, but here there is the CAB and the local Carer's organisation. Try calling Contact A Family or the relevant disability charity for your DS's needs.

Have you done a search on MN on DLA? There's been good advice given in the past on appeals. Sadly a lot of it depends on the legal definitions etc so it's important to get those watertight.

If you request an appeal, they will automatically do a reconsideration I think, so there's no point asking for a reconsideration first.

bullet234 · 27/01/2011 10:19

Appeal. At least they should give their reasoning as to why they think a typically developing 7 or 8 year old would have continence difficulties, or falls that require 9 hospital visits in one year.

sugarcandyminx · 27/01/2011 10:21

Did you use the Cerebra guide when filling out your forms?

WHAThisFlappinNotFlyin · 27/01/2011 10:25

Very true bullet!!!!

SparkleRainbow · 27/01/2011 10:26

How do you do an appeal in person I didn't know that was possible? I will search mn for info on appeals too.

Unfortunately there isn't a disability charity for ds that can help, there is an online support group, but they don't have the facility to help with this, the only charity is based in the US, so they can't help really.

Didn't know that an appeal automatically meant a reconsideration. If I request an appeal do I have time to collect more evidence etc?

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chuckeyegg · 27/01/2011 10:26

Don't think about appeal yet. Reconsideration is the first step if this fails then you have the option of appeal. You may wish to get help from citizen advise or the benefits agency to help you with the reconsideration letter.

SparkleRainbow · 27/01/2011 10:28

No didn't use the cerebra guide for the form, but did for the DLA dr visit. Think I did a good job with the form though, it was detailed, just such an unusual and misunderstood psyical condition.....I think that is the problem.

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SparkleRainbow · 27/01/2011 10:29

Will the benefits agency help with the reconsideration letter then.

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