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anybody about with a spare 10 mins or whatever to read my dla letter and see if it covers everything??

10 replies

jennybensmummy · 22/04/2009 08:30

my son has been refused the mobility component of dla. he is autistic and the main reason i think we were refused is the crap paeds info given - ha ha you probably remember me moaning about that on another thread!! i have wrote a letter to go with some supporting letters to back me up to dla to ask them to reconsider. it is rather long though and just wondered if anyone has time to read it and help me with it if they think there is anything majorly wrong or missing? not to worry if you cant i know everyone is probably very busy, just need to post it off this afternoon and want to make it best i can you know what dla are like!

OP posts:
jennybensmummy · 22/04/2009 08:34

if anyone does it is here please help me i hate these things!!

Dear Sir/Madam,

Re: ...

I am writing to request that you look at my sons claim for the mobility element of disability living allowance again. Benjamin?s condition has not changed since i completed the form but i feel that maybe some of the points in the form I did not explain very well. I also wish to ask you to reconsider using the information on the form filled in by a paediatrician, the person who filled this form in has never met my son and many of the points on the form were inaccurate. I am currently making a formal complaint through the hospital my little boy is seen at about the way this has been dealt with and the information that was put on this form. The reason we have been unable to get a paediatrician to write to you who has met Benjamin is that the position in this area is currently vacant and we do not have a permanent paediatrician so we are seen by different locum paediatricians each time and these are often only temporary for a couple of weeks so are not available by the time a form is sent out by yourselves. We do have many other permanent professionals involved and i have enclosed some reports and supporting letters from these who can give you a more accurate description of my son as they have seen him over a greater period of time and assessed him more thoroughly.
The issues with Benjamins mobility which I feel I may need to explain further are his severe behavioural problems, his social and understanding difficulties, and his physical difficulties in walking. Benjamin has a diagnosis of Autism and this affects him in a variety of ways. I am therefore i believe applying for the mobility element of disability living allowance under the criteria of severe mental impairment although he does also have a few more physical problems which i shall also explain in further detail.

Benjamin has severe language delay/impairment and his understanding is also low due to this so when he is out of the house he needs his pecs (picture exchange communication system) to communicate and does not respond to verbal instructions, so telling him to stop requires a symbol to be shown to him rather than just shouting stop. Due to Benjamin?s sensory problems he does not cope well wearing reins and therefore to keep him safe from the dangers of roads we usually take him out in a special needs buggy as recommended by a previous paediatrician. Benjamin is unable to walk safely as he has no awareness of dangers and cannot respond and react to verbal instructions which are needed to keep him safe.

Benjamin has severe sensory processing difficulties and gets very upset by unexpected noises, bright lights in places such as supermarkets, pressure and touch on his body, and busy places. This is linked to his autism and Ben has meltdowns and panic attacks when he is over stimulated by these sensory things. As a result of the sensory issues Benjamin has with touch we do not use reins with him and cannot get him to hold our hands. This is not that he just doesnt want to but due to his sensory difficulties he finds these very uncomfortable and difficult. When somewhere or something overstimulates Benjamin and distresses him he goes into a full meltdown which can last for anywhere between 5 minutes and an hour, usually around 20 minutes. These meltdowns are not like a normal childs tantrum as he cannot control them and he has them due to his autism and once he is in a meltdwon he cannot control what he does. A meltdown for Benjamin involves him dropping to the floor and thrashing his body around and headbutting the floor repetitively as this is a sensory thing that Benjamin does in order to try and regulate himself (as described in the attached report from occupational therapy). Benjamin is also very violent during a meltdown and hits out and kicks anyone who is near to him usually including strangers so for his and their safety we use the special needs buggy. When Benjamin is like this it takes two adults to restrain him and therefore we dont often go out without the special needs buggy as then when we are in unfamiliar places and Benjamin has a meltdown it is easier to control him. Due to these sensory difficulties we find he is often unable to walk through no choice of his own because one of these things inhibits him. For example Benjamins difficulty with noise means that if we are about to leave the house and he hears a lawnmower he finds he is unable to move through this sensory overload and goes into a meltdown which he is unable to control. When in the car Benjamin has a specialist car harness to keep him safe as he does not understand the importance of a seatbelt and cannot keep it on however for safety we have the specialist harness which he cannot undo so keeps him safe though he does headbang continuously whilst in the car due to this specialist harness restricting his movement.

Benjamin?s understanding of dangers is limited and on occassions we take him out without the special needs buggy he runs off when he gets overstimulated or has a panic attack due to an everyday sensory occurance such as a dog barking, a crying baby, a busy shop, or bright lights in a shop. When these things over stimulate Ben he gets very distressed and cannot cope in the situation and runs away or goes into a meltdown. Due to his size we cannot just carry him to prevent this. Benjamin is not aware of the dangers of roads so when he is in a meltdown or runs off to avoid something which stresses him he often runs straight into roads.

When in a meltdown Benjamin headbangs repetitively on the hardest surface he has available both in the home and out of the home so this usually results in him doing this repetitively on the concrete, walls etc. This is obviously very unsafe as Benjamin has a lump on his forhead which has been there for the last 12 months due to headbanging and this is made worse by doing this on hard surfaces which is hard to stop. Therefore for his own safety we have been recommended to only take him out in a special needs buggy with extra padding around the frame to try and prevent him from harming himself.

Benjamin walks on tiptoes (also described in the attached occupational therapy report) the majority of the time and as a result of this trips and falls often. This is not too much of a problem indoors but can cause him injuries outdoors. The paediatrician we saw on 30-03-2009 (Dr Cresswell, another locum who has also left now) has referred Benjamin to a physiotherapist regarding this as he believes there may be an underlying problem with Benjamins joints which is causing these mobility problems which would also explain why Benjamin cannot always walk very far before getting tired and uncomfortable.
I ask you please to look at my son Benjamins Hall?s claim for the mobility aspect of disability living allowance using the attached reports and letters to give you a better insight into Benjamin?s difficulties. I have some more information to follow but due to the easter holidays soem of the people that see my son have been on annual leave and been unable to complete this in time. I telephoned the dla helpline on 21st April 2009 and spoke to a lady called claire who said she had made a note of this onto my sons case and that i could send some information now and the remainder when i have it in the next few weeks. I trust that will be acceptable and I will let you know when i have sent all the information which I intend to in so you can begin then to look at Benjamins claim again.

If we were to be awarded the mobility element of the disability living allowance it would enable us to take Benjamin out of the house more often and make it easier to attend appointments for him because it is difficult on public transport due to benjamins behavioural issues and violence towards people and due to my partners work commitments we do nto get to use the car very often so take Benjamin out of the house and there is a limit to the number of places we can go without using public transport and just using his special needs buggy.

If you require any further information from myself please do not hesitate to contact me.

Yours Faithfully

OP posts:
jennybensmummy · 22/04/2009 08:35

oops just realised need to run a spell check still as a few typos!

OP posts:
chuckeyegg · 22/04/2009 09:52

Jennybensmummy - It looks a very full and concise account and should help the decision maker fully understand you childs condition. I really don't think it needs any changes. I hope it is awarded. Please let me know I'll keep a watch on this thread.

Good luck

bubblagirl · 22/04/2009 10:20

i think its great what you have written but maybe you could add some references to other chi8ldren his age

for eg bubbla boy is 4 so i would say when he has a melt down communicating with him and his understanding is not the same as other 4 yr olds he cannot be talked to to be calmed down and doesnt understand what im saying in order to try and calm him down which makes it very difficult for us and those around us

also other 4 yr olds can understand simple language such as stop and will hold hand if instructed to bubbla boy does not understand the need to stop or what would happen if he doesnt stop other 4 yr olds have basic understanding that they need to stop at road because they may get hurt by car

other 4 yr olds can understand and handle different noises around them where as bubbla boy finds them very distressing and needs alot more care and consideration when leaving the house where as other 4 yr olds do not need this so i feel with the huge difference in his needs to other 4 yr olds he needs the mobility as we have to use the chair alot of the times where as other 4 yr olds are able to walk with parents and follow simple instructions and also communicate there needs to there parents bubbla boy is a danger to himself and all those around him there fore clearly defining how different to his peers he is

bubblagirl · 22/04/2009 10:22

i really hope you get it we were going to apply but have had break through with bubbla boy as he has now learnt what he has to do he doesnt understand but he does manage to walk with me and has learnt to stop at roads

still need to be extra careful as some days he doesnt but he is gradually learning the do's and dont's

ChopsTheDuck · 22/04/2009 10:40

I would recomend trying tos tate how often things happen, such as the running out into roads, and the headbanging. Also the first paragraph wheere you explain about meltdowns is a bit long and difficult to read.

Personally I would reword it. I think you need to state first that he uses a special needs buggy, and needs two people to keep him safe out of doors. That way you highlight the mobility issues that he has, then go on to explain why he needs that, and how that is different to the needs of a NT 4yo.

I think you could divide it into two p[aragrapohs too, and deal with the car issues seperately. I think that is important as another issue.

The paragraphs following I think are better, you stated the issues first and with more clarity. I agree with bubblagirl that extra references to what makes him different to other children would help.

That is jsut my opinion, I'm not an expert, but we did get higher rate dla first go.

ChopsTheDuck · 22/04/2009 10:43

the timing thing I think is really important as the dla like to guage the extent of everything by their idiotic how many times a day questions. So if it happens every time you go out, or 3 times a day state it.

Also, I don't know if you are aware, but if you are going for higher rate, it is really importatn to emphasise that for at least some of the time he cannot walk at all, such as when he has a meltdown.

Phoenix4725 · 22/04/2009 10:45

I listed what ds could not do compared to a nt child his age and just how much longer it would take

cherrymonster · 23/04/2009 00:22

ds2 was awarded the low rate for mobility- he has dyspraxia and we are awaiting diagnosis of possible hfa/as. he was awarded mobility low rate on account of an accident he had last summer when he ran into the road, narrowly missing a bus and got hit by the car behind the bus. he can walk fine, but needs extra supervision around roads and water as he has no road sense or sense of danger, i cannot take him out with his two younger sisters as i cant watch all three of them at once.

daisy5678 · 23/04/2009 00:40

TBH, I would have thought that he qualifies for higher rate mobility - I can't see how in the world you would be refused lower.

(Ask MN to get rid of Ben's surname name and the name of the doc though - especially if you're making complaints, you don't want all your details googleable!)

Good luck - and, btw, push this to Tribunal if they turn you down this time as J is like your Ben without the language delay and he (NOW) gets higher after a looooonnnnng Tribunal and appeal process.

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