This is a work in progress, but for now, I thought I'd start putting together bits and bobs which helped me get DLA HRM for my son, an what in my opinion were the decisive parts:

1 - Keep a diary. Write it all, the good and the bad, the frustrations, let is rip. You don't have to be a great wordsmith, use a spellchecker at the end, and avoid txt spk, but apart from that, say it like it is. I will be posting a .pdf further down, this was the diary I kept for about 3 months between 2 tribunal hearings, and you can see for yourself that I just said things as they were going through my head, and I was told by the panel that this made an extraordinarily moving testimony to our day to day difficulties.

I used a nifty little application called "Efficient Diary" which I kept on my desktop and would fill it in daily. Google it up, it's freeware. ;-)

2 - Visual evidence. One picture is worth 1000 words as they say. I won't post here the footage of my son "in action" which I submitted at the tribunal, but I can tell you that you couldn't hear a sound in that room while it was playing. Only lasted about 12 mns in total, but it felt a lot longer, and again the chairman told me that it made for quite an impressive testimony.

So, film your child in meltdown. Film the damage he causes around him. Film the bruises on firends and siblings, or film him running away or rolling in a ball refusing to move, whatever it is that sets him apart from other kids. Odds are that you'll feel like cr*p for doing it while your child is distressed, but this is to help him in the long run, so suck it up and film.

3 - Have your file indexed and cross-indexed. You'll be flustered enough on the day, you need to be able to retrieve whatever document you are relying on quickly, especially as by now, you probably have a file the size of a small shed to carry around.

4 - What matters is the LAW. The DWP's response is to use the "can walk, can run" argument to deny HRM, and the panel would tend to agree with them about it, it seems after all logical. The onus is on you to show that the walking and running argument is NOT an automatic block to HRM, and you will have to supply relevant caselaw (I will provide some further down). Every argument that the DWP uses, you need to provide caselaw to shoot them down.

The chairman at the tribunal (the lawyer) said to me at the end of the hearing that the caselaw I had provided in my file powerfully backed my case and made it impossible for them to reach any other decision than to grant HRM, and that its throuroughness was "impressive" (to which I was thinking yes yes, yes, ok, I don't care, I've WON!!! ). This isn't to build myself up, this is to stress how vital it is to have precedent at your fingertips. DON'T give them a chance to say no, or they will.

5 - Demolish the DWP's case. You will get sent a copy of the evidence they will be using beforehand, make sure you look for the holes and weaknesses in it. In my case, their only evidence were a school report going back 5 years (!) and a phone call to his current school (but couldn't say to whom they had spoken!), and then asked their Dr to judge on my son's abilities based on this flimsy evidence. It was easy enough for me to discredit that, as you can imagine, compared to the amount of evidence I had to the contrary.

5 - Dress conservatively, speak eloquently, don't lose your temper, speak with passion, but not aggression. YOU have to convince them that parting with large amounts of cash for your child is not a duty they have, but the only correct decision they should reach based on precedents and the facts in front of them.

6 - OPTIONAL: One of the main difficulties I had was that my son is out of the system so to speak. His GP hadn't seen him in years, CAMHS hadn't seem him since diagnosis, paediatrician had discharged him when he got into a SEN school, so there was precious little "official" medical evidence of his difficulties. So I asked for testimonies from people who know him: family (sister is a nurse), teachers, escort, LSAs, youth club leader, NAS official (and friend), friends of good standing (one of them is a headteacher), as well as siblings and more casual relationships. If you're in the same situation as me, I strongly suggest you do the same.

That's it for now, I'm sure I'll add more as I go along.

My son is VERY highly functioning, very articulate, very intelligent. He has a diagnosis of Asperger's Syndrome, which the highest functioning on the spectrum. but he now gets both HRC and HRM, despite the DWP's opposition, so I know it can be done. I post this thread to help anyone going down the same path in the hope it will help you wherever possible.

.

DIARY

Apologies for typos and the odd swearword, I've only edited the names. ;-)

PS: Let me know if the link doesn't work, I'm not sure I have done it right!!!

Booky thank you this very interesting and informative i too as you say am out of the system can post much now as im using my mobile so will be back this evening on my pc thank your a gem PF

This was my testimony/argument (you might want to make yourself a cup of tea before diving in, lol):

Re: XXX, DOB XXX

T is our son. He was diagnosed with Asperger’s Syndrome by CAMHS age 7. Like a lot of AS sufferers, he is intelligent, articulate, but his social skills are limited and his reaction when the world gets too much is uncontrollable rage, in a typical flight or fight action. In those situations, his behaviour will vary from running away from whatever is upsetting him and not stopping, to running away and hiding without any awareness of the risk he puts himself under, or roll into a ball and refuse to move, in which case we have little choice but to lift him or drag him. When lifted or dragged, he screams, makes keening or animal noises, kicks and tries to wriggle free.

As regards our application for DLA, I understand that there are 5 essential parts to be fulfilled to meet the criteria for higher rate of mobility under the mental impairment clause:

1 - That your child must be entitled to the higher rate care component of DLA

Criterion fulfilled. The DWP accepts that T’s needs for care are sufficiently severe to justify the higher award for care based on the claim form I filled in.

2 - That your child suffers from "a state of arrested development or incomplete physical development of the brain which results in severe impairment of intelligence and social functioning"

Please see page XX of submission by DWP’s own Dr, Dr F*: “because of Asperger’s, he will have arrested brain development.”

Criterion is fulfilled, although his conclusions differ from what people knowing Tristan would say.

As for the sub-parts under this criterion, case number C/DLA/2288/2007 states that “claims should not be rejected on the basis that the claimant with autism does not have arrested development or incomplete physical development of the brain.” It seems to me that the DM is in fact taking the stance that being able to walk or run is in itself sufficient evidence that T doesn’t have other severe impairment of intelligence or social functioning and tries to make the case fail under the “virtually unable to walk” and doesn’t approach the case under the severe impairment angle. (I believe that T fulfils both definitions anyway, as a recent decision, CDLA/0217/2009, confirms that an ability to walk, walk fast or run is not necessarily a barrier to the high rate of mobility being awarded).

Case no C/DLA/3215/2001 tells us that “children who have normal or above average intelligence can also be considered to have a severe impairment of intelligence if it can be demonstrated that they display a total lack of any sense of danger an inability to calculate risk.”

I believe that the examples given of T’s behaviours (running in the tram path, hiding under coats to the risk of suffocation etc) clearly demonstrate the criterion is fulfilled. It may be added to this that with his lack of social understanding, T is completely unaware of the dangers which can stem from talking to strangers, for example, or doing whatever he is being asked to do to please someone else. Would he jump off a bridge if one asked him nicely? Yes, possibly. He certainly would go with anyone who seemed interested in his obsessions. Thus he is even more at risk from predators, manipulators and bullies and this is highly unlikely to ever change.

3 - That your child exhibits disruptive behaviour which is extreme

Please see enclosed evidence from people who do know T and have observed T’s disruptive behaviours first-hand.

Decision C/DLA/2054/1998 states that: "the tribunal had erred in law in holding that, by taking hold of the claimant’s arm, to stop him causing further complications, the claimant's carer did not physically restrain him within the meaning of the regulations... I consider that physical contact which is necessary and effective to prevent a claimant from causing injury, or damage to property, amounts to physical restraint, irrespective of the degree of force which is needed to achieve that result." Later in this decision, the commissioner goes on to define the term 'requires', stating that this should mean 'reasonably requires' and that the purpose of such intervention must be to prevent physical injury or damage to property from occurring. There is no requirement that injury or damage would inevitably result.

In T’s case, it is necessary for close contact at all times and the way I have been doing this without being seen as treating him like a baby is by putting my arm around his shoulders to steer him and keep him close. The film evidence shows that when in meltdown, this isn’t sufficient and requires full lifting and/or dragging him by force.

4 - That your child regularly requires another person to intervene and physically restrain them to prevent them causing physical injury to themselves or another or damage to property

Please see evidence from current school, guide and previous teaching assistant. Even when supervised, T’s behaviour can deteriorate suddenly and without warning, for example when he threw a child scooter at the teacher from another class during playtime. He then went on to access the skip which was in the playground and throwing boxes and other debris out of it until the rest of the staff managed to remove him away from it. In situations like these, the staff has to remove the other children out of harm’s way, and the harm in question is my son. It also takes two people to watch him and/or restrain him nowadays, as he is above average height (about 5’10 age 12) and when in meltdown, his strength seems to multiply.

5 - That your child's behaviour is so unpredictable that they require another person to watch over them whenever they are awake

Again, please see the testimonies supplied. Both their diversity and wide range speak for themselves. Even within the highly structured environment of a school for autistic children which is as attuned to his needs as can be, there still remains the need for absolute vigilance and constant watching over, ready to restrain him at the first sign of aggression or attempt to abscond, and at least one person when not in crisis and at least 2 when actual physical restraining is required.

Re: the DWP’s submission.

5.2 - The report from T’s school received 29/06/2004 (Docs 5 to 8): The traits which characterise his behaviours are already plain to see. However, the report was written when T was 7 years old, and I am sorry to say that in many ways, his behaviours have become far less manageable than they were and that non-compliance by a 12 years old is a lot more difficult to handle than that of a 7 years old. T’s behaviours have become more violent, and his sensory tolerance has become worse, not better. As a result, the things which cause him to overload have increased in nature and frequency and we can’t take him out on a 1 to 1 basis anymore, it requires 2 of us at all times. In that respect, although the school report lays the foundations of the nature of this case, it is merely that, foundations which are 5 years old.

5.4 – The telephone call made on 21/01/09 (doc 50): I haven’t been able to ascertain who at the school the DWP DM spoke to. Her report states that “the teacher” called back, but I haven’t been able to find out who that was supposed to be. The school went through constant staff changes for the last couple of years, and it is difficult to establish whether the “teacher” was his regular one, a supply one, someone who knows T well or not.

I find the questions as asked by the DM rather leading: there is no doubt that T has the capacity to walk or run, the question is whether his autism blocks him from using that capacity appropriately, and to that the answer must be a resounding “yes”.

Likewise, “generally he knows what he’s doing except when he is out of control” doesn’t really take into account the very specific difficulties autism presents. The whole point is that no-one can predict if and when T will go “out of control”, and for this reason, he must be escorted and ready to be restrained at the first sign of a meltdown. In some cases, he can be coaxed and gently handled in the right direction, but this could change in the blink of an eye to a full catatonic position or an attempt to run away and hide, or throwing things at anything and anyone around him.

p. 53 – The DM’s conclusions: What this comes to is the difference between someone who has read a 5 yrs old report and made 1 phone call and from there decides that T’s behaviours are not extreme enough to justify a higher award, and the testimonies of people who do know him, some on a daily basis, some on a more occasional, who all agree that his behaviours are in fact extreme, put him and others at risk, and may I add, all reacted in the same incredulous manner when I explained to them the reason given by the DWP for refusing the higher mobility award. I also submit that the video footage and the photographs speak for themselves. In commissioners decision C/DLA/2054/1998, a commissioner clarified the definition of the word extreme: "The word extreme is an ordinary English word, connoting behaviour which is wholly out of the ordinary. However, the claim is for the mobility component of Disability Living Allowance and it is the claimant's behaviour when taking advantage of the faculty of mobility, generally outside the home environment, which needs to be considered." I believe that the behaviours exhibited by my child cannot be described as anything but extreme.

p. 60 – Dr F’s conclusions: The report agrees that there is arrested brain development. The conclusions however are that T’s learning difficulties are not severe. Age 7, it might have been an easy mistake to make as the discrepancies would not have been as obvious, but T’s learning difficulties are fairly severe. His handwriting age 12 is that of a 6-7 years old, his spelling is virtually non-existent, and where he may be using long words doesn’t mean he understands the concept behind them. Certainly, if he were in a mainstream school, his learning difficulties would be much more obvious, and even in the special needs school where he is, his curriculum has to be very strictly tailored to make learning of any sort achievable. Furthermore, his lack of social awareness means that he doesn’t have the behaviour restraints a normal child would have, which leads to the extreme behaviours when in public.

As for the conclusion that “he may get agitated, but this is not severe unpredictable behaviour requiring regular restraining”, I do not see what allows Dr F to reach those conclusions from the limited information provided, which as far as I can see, is the old school report and the one phone call made by the DM. Based on this very limited information, Dr F makes a sweeping judgment about T which evidence from people who do know him simply doesn’t support. Whilst there are children on the spectrum who may not need the amount of restraining and supervision that T does, there are many who do. That is the problem with a spectrum condition, not 2 of them are alike, and in T’s case, this is very much a child who needs constant supervision both in and outdoors to protect both him and others.

As his mother, I have far more examples of how his autism puts him and others at risk due to the unpredictability of his behaviour than I could possibly wish for, and how his behaviours run to the extreme, unpredictably, and are triggered in a way we cannot ever ascertain. I will give the tribunal some examples:

- Preparing for the new school year, in M&S. He got upset and ran off before I could grab him. It took us 2 hours to find him, he had hidden amongst the winter coats and when we found him, was sweating profusely and was close to suffocation, but we still had to forcibly drag him out.

- Looking for new shoes, Clarks’. T went in meltdown as we were leaving the shop and rolled into a keening ball. We ended up having to drag him for ½ the length of C**** High Street (on a busy Saturday morning!), then my husband held him there while I went to get the car as close as I could so we could bundle him in.

- I have been called time and again to collecting him from the swimming-pool because he went in meltdown there and the school staff can’t control him and the bus has to go back without him.

- We had to show ID to a policeman who thought we were abducting him on one of the occasions we had to drag him kicking and screaming.

- T has broken about 8 pairs of glasses in the space of 3 years because he throws them violently to the ground or at people when he goes in meltdown.

- We have had to abort numerous shopping trips because T would become too unsettled to be taken out safely.

- We don’t actually go to restaurants or cafes with him, and to the cinema only under very controlled circumstances, and even then have had to leave during the performance on many occasions.

- Recently, I have noticed that he has a patch of bald hair on the top of his head, and this is due to him self-harming by pulling out his hair at the roots when under stress. At this point, I don’t know how I am going to handle this apart from getting his hair cropped too short for him to pull at, but am very worried about the trip to the barbers and doubt we’ll be able to keep him still and calm enough for long enough for that.

- We made the mistake once of taking a hitch-hiker (he was still fairly recently diagnosed, and we were still making lots of mistakes!) when we were travelling in France. T screamed non-stop and kicked his seat and banged his head against the window all the way from Lyon to Paris. (We don’t take hitch-hikers any more...)

- We have had to add additional deadlocks to our front and back doors to stop him running away from the house and hiding. We also have had to replace the inside door locks so they can be opened from the outside for when he locks himself inside one of the rooms.

- Even though we could travel free on trains (Mr P works for the railway), we in fact use our car to go anywhere as we cannot guarantee his or anyone else’s safety on the train.

- The local Lion’s Fair is an annual event and is open to all disabled children free of charge for 2 hours before it opens to the normal crowd. We have taken T there for 2 years running and both times it ended with a major meltdown and having to carry T out of there kicking and screaming and having to pin him down in the car to be able to drive home. We won’t be taking him this year, for although he enjoys the event, he simply can’t cope with the sensory assault.

- One of our worst problems is the morning routine, which is anything but. If for whatever reason, T doesn’t want to get up, there is nothing I can do to make him comply. Through the years, I have tried bribery, threats, even physically dragging him out, forcibly dressing him and dragging him outside, and we still couldn’t get him the car. Even if we did manage to get him in the car, it would be impossible to go anywhere, as the kicking and spitting etc would put the driver, escort, and other children at risk anyway, he is far too unpredictable to be safely driven anywhere at that point. We have made a visual timetable, put in place a reward system, you name it. It simply cannot be done.

T is my son and I love him with all my heart. But there is no doubt that his extreme behaviours are making his life and ours extremely difficult. We cannot relax, ever, when we’re out with him. As for my husband and me, we no longer go out as a couple, as we can’t get a babysitter who could cope with his meltdowns and violence. Even our daughter recently moved out as she couldn’t cope anymore and even T’s brother, who’s nearly 18, stays out of his way when he goes into meltdown.

Regards,

Right, can't find the case law I actually refer to in my testimony on my HD, I'll have to scan them from my paper file and upload them later. Or you can Google them and they should come up (if you can't wait, because I might not be able to do it straight away).

Thats brilliant. Im sure this will be really helpful. I will ask them to look at the mobility side of things again. Will probably end up going to tribunal like you did but it will be worth it if we do get the higher rate.

Thank you Bookie for the amazing insight into the problems T and yourself and family are facing trying to claim a benefit which you should automatically receive and not have to fight for. This just confirms what I thought all along.... that you are one amazing lady.

This benefit should be automatic for children facing problems and issues with everyday life like T. Keep up the fight.

Hugs

JB:)

Bookie.... you've left your son's first name unedited in post #4.... point 1...

and again at the end!!

Bookworm,

I had a major stroke in 1990 and is the reason I'm no longer as you say on the system.

18mths after my stroke I went back to work until September 2008 when I say back to work this was not just one job but many due to the affects the stroke left me with I was unable to keep a job going due to discrimination etc.

I did not claim DLA because I was working yes I know its not means tested but the point is soon as I got home I was so knackered (tiredness is an affect of the stroke) I just slept so did not have anytime so I just carried on working.

I now know that going back to work so soon was a bad idea and I should have sorted my benefits out first but back then post stroke care was nothing like it is now.

Now you get help with all this from occupational therapists etc.

I am left with paralysis and weakness down my right side including claw hand and drop foot it is not comfortable at all dragging my foot and my leg gets so heavy sometimes i wish they would chop it off as it does not feel like my leg.

I also have memory problems, never go out as i cant be sociable forget faces very easily.

I get very confused and this makes me depressed

march 2009 I had a heart attack due to very high blood pressure and stress.

I filled out the DLA forms with the help of CAB and that was a task in its self as my communication is not that good.

anyway all i got was LRC so I asked them to reconsider via a letter and that is where it stands at the moment im waiting for a reply to the reconsideration.

I wish now I just appealed but it was not until after I sent the letter off that I found out I could do this.

last Wednesday I got the Atos Doctors report and the report from my GP and it all a load of bull.

I was only asked to walk the length of my living room and this I had to do with a crutch as the night before I had muscle spasm and cramp in my right calf muscle so I was in a bit of pain but she said I could walk 100 mtrs ??????????

Anyway this thread will be very useful too me as it gives a good idea how to lay out your testimony the diary is also a good idea never though of that.

Thank You Booky

PF

Thank you Bookie for the amazing insight into the problems T and yourself and family are facing trying to claim a benefit which you should automatically receive and not have to fight for. This just confirms what I thought all along.... that you are one amazing lady.

 

This benefit should be automatic for children facing problems and issues with everyday life like T. Keep up the fight.

 

Hugs

 

JB:)

Unlike many other documents on this site, this wasn't written as a template for people to use, this was what I used, written from my perspective, and was never meant as a public document. It isn't necessarily easy laying it there in the open for all to see, but if it helps even one person fight on, then it's worth it.

I truly hope it assists many people in fighting on.

P1, thanks for the head-up, I really thought I had edited it all!

Bookworm.

Well I am Deffo going to try and get high rate mobility. First thing tomorrow I will be on the phone asking them to look at his case again. I have started to keep a diary already and have spoken to his doctor at camhs who is writing me a letter and has said they will even come to the tribunal with me if it gets that far. Your advice is brilliant and I can honestly say it has given me the kick up the bum I need to try and get this much needed extra money. My son is not safe on his own and as such I have to look after him constantly. Its not just my sons safety I fear its the members of the public too. Travelling on a bus is a no go and we live 3 miles away from town/doctors/shops. I have just asked Family fund for some driving lessons so hopefully they will be awarded. Fingers crossed. Once again thank you for your advice and I really do appreciate how difficult it must be to publish your every day struggles. I get quite upset when I read reports that have been written about my son and even the diary that I have wrote about him in the past for dla. Really hits home to me that he will never have a lot of things most of us take for granted. I doubt he will ever leave home or be toilet trained etc. So sad. Will keep you posted on if Im succesful

Hi Bookworm,

Conglads. It's funny (not in a funny way if you get my meaning:rolleyes:) but when I read through your post it was deja vu but not with the DLA people but more so with the SS, LEA & LGO.

My daughter has a dx of aspergers along with god knows what else. She does get DLA but the lower & middle rate. At the moment & given the hell we've been through plus she is at a residential school we're happy with that for the time being.

However I think until parents start to have hard proof of what they endure will things ever start to get better. Sadly I have lost the fight for the time being & in fact I rarely talk to anyone about my daughter's dx due to the fact when they meet her I'm given looks of "you're one of those type of parents!". No one can ever imagine the meltdowns until they've experienced them & when they do they class them as "tantrums".

Anyway enough of my ranting & well done

Well done!! My son has been dx with AS and I am going to tribunal because he was only offered the lower rate ... I was just wondering if your son still gets higher rate as this was written a couple of years ago?