mummycanhandleit

Disability Living Allowance Master XXX Hamilton PXXXXX Response on behalf of Master AXXXX Hamilton against the DLA Decision with regard to a “High Rate Mobility Allowance” Introduction We (AXXX's parents) have examined the criteria laid down by the current legislation of the Social Security Contributions and Benefits Act 1992, Section 73, part 1 to 4 with regard to qualifying for the higher rate of the mobility component of DLA and we feel AXXX does satisfy the required conditions and therefore should be awarded such status. The Criteria Our understanding of this Statute Law is that one must be “suffering from a physical disablement…resulting in one’s physical condition as a whole being such that; 1. You are unable to walk. 2. You are virtually unable to walk. 3. The exertion required to walk would constitute a danger to your life or would be likely to lead to a serious deterioration in your health. 4. You have no legs or feet. 5. You are deaf and blind 6. You are entitled to the highest rate care component and you are severely mentally impaired with extremely disruptive and dangerous behavioural problems. We understand that AXXX, in order to qualify for High Rate Mobility must satisfy one of the above conditions. AXXX's Case We feel AXXX's case for High Rate Mobility Allowance is justified as he satisfies the following criteria; You are virtually unable to walk AXXX can walk but only to a limited extent. AXXX's behavioural difficulties stem directly from his Autistic Spectrum Disorder (ASD) , Sensory Processing Difficulties and extreme behaviour conditions caused by his ASD. Behaviour is one of the main issues that restrict his walking. We state that ASD is a physical cause because it is a disorder of the brain development and therefore should be classed as so. AXXX is unable to walk for long without interruptions, distractions and/or incident. Other conditions that compound AXXX's difficulties in walking are his impulsive and physical over-activeness, again these complications are brought on directly by his ASD. Declan will often and randomly go into a tantrum without notice. This is due to his ASD and Sensory Processing condition. He will lie on the ground kicking and screaming without any regard to safety of himself or others. He will kick and punch out at anything passing by, whether a person, an object or himself and will try and run away from his supervisors. AXXX finds a vast number of day-to-day environmental surroundings very distressing. These include various loud noises; bright lights; queuing in a line; crowds and unfamiliar people, objects and situations. A direct result of AXXX's ASD is that he has difficulties with many external sensory stimuli and this inevitably results in very bad behaviour while outside. AXXX will encounter temporary paralysis (refusal to walk) during most attempts to bring him out doors depending on where he is going. If going to the shops he will completely melt down and while there he tries to run away and hide on shelves etc. We currently limit our out door movements with AXXXX down to a minimum which is having a detrimental effect on his general life and social skills. Other ASD causes which directly affect AXXXX’s walking are his inability to distinguish danger of any sort; his clumsiness; poor balance; lack of coordination; his anxiety and fearfulness of the outdoor environment and the unknown. Severe Mental Impairment We understand to satisfy this section AXXXX must pass the 5 criteria’s laid out by the regulations; i) AXXX must be entitled to the higher rate of care component of DLA; Yes ii) AXXX suffers from “a state of arrested development or incomplete physical development of the brain which results in severe impairment of intelligence and social functioning”; We refer to the relevant case number (C/DLA/2288/2007) where Social Security Commissioner Jacobs made the decision which held that tribunals and decision makers, where they accept that the claimant suffers from autism, must also conclude that he/she has either a state of arrested development or incomplete physical development of the brain. Ashton, as a direct result of his ASD, suffers from a severe impairment of intelligence within his day to day functioning and understanding the world around him. AXXX shows a restriction in his development when it comes to his “useful intelligence”. We would state that AXXX has the social and behavioural skills of a child who is 2-3 years old. AXXX is regularly described as being "toddler-like." AXXX demonstrates severe impairment of intelligence where it relates to a “total lack of any sense of danger and inability to calculate risk”. We refer to the relevant case (C/DLA/3215/2001) which concurs that a child can be considered to have severe impairment of intelligence when displaying these conditions. iii) AXXX must exhibit disruptive behaviour which is “extreme”; AXXX suffers from a number of disabilities that cause disruptive behaviour. These include ASD and Sensory Processing difficulties. We draw reference to AXXXXX's reports and in particular to correspondence from; a) XXXX XXXX Primary School - Teaching strategies employed, which refers to AXXX as having “severe emotional outburst" Appendix C Medical Advice- Dr Small which refers to "significant concerns about AXXX's impulsivity, difficulty in following instructions, poor attention and concentration." "his behaviour is difficult and he appears to require a significant amount of supervision and 1:1 attention" "Axxxx runs away from school at lunch time" "He needs high levels of supervision within school as he is very active and has little idea of consequences of his actions." "impulsive little boy with limited danger awareness." c)Report from Primary Behaviour Support Services- Mrs J Moir has said of Axxxx having "extreme difficulty in understanding and carrying out basic instructions in school" "very active child who can be aggressive to other children" "concerns for Axxxx's safety and the safety of his peers" "he has been observed covering his ears when the school bell rings and also head butting a boy in line who bumped into him" "he finds social interaction difficult and his advances to other children can be inappropriate and at times too rough." d) Appendix B - Educational Advice - SENCO Mrs C Hamilton has reported that Axxxxx "almost always needs 1-1 teacher attention" "school has had to divert another assistant from another class on a regular basis at times throughout the day." "difficulty in complying with teacher instructions, his rigidity, emotional outbursts and need for individual support." "high level of 1-1 support which Axxxx requires" "he has attacked other children in the playground on a number of occasions" "he has run off around the school grounds" We have numerous reports from Axxx's school were he has physically harmed members of staff and/or his fellow class members. We do not have one day pass where Axxx has not tried to commit harm to himself, someone or to something. It is essential that Axxxxx is fully supervised when in any outdoor environment and/or when in company with other persons. When Axxxxx is taken outdoors, his anxiety levels become increased and which in turn leads to his disruptive behaviour becoming even more aggressive and spasmodic. We understand that the word “extreme” in this case is defined as connoting behaviour which is wholly out of the ordinary. We are therefore satisfied that Axxxxx's behaviour would satisfy this criterion. iv) Axxxx regularly requires another person to intervene and physically restrain him to prevent him causing physical injury to himself or others or damage to property; As stated in the last criterion; Ashton requires an extremely high level of supervision when placed in an outdoor environment. Axxxxx requires this level of care amongst other reasons to restrain him as and when he does go into a tantrum or shows violent behaviour. We are still waiting for Axxxx's assessment for Special Educational Needs to be carried out which will hopefully be done this month. Referring to the decision (C/DLA/2054/1998), where the Commissioners states that the word “Requires” should mean “Reasonably Requires” and that the purpose of such intervention must be to prevent physical injury or damage from occurring. There is no requirement that injury or damage would inevitably result. v) Axxxx's behaviour is so unpredictable that he requires another person to watch over him whenever they are awake; Axxxx is never left unsupervised at any time of the day or night while he is awake. In section IV, we have drawn the attention to the additional staff being placed with Axxxx at his school to ensure he is monitored at all time and at lunch he was given 2 buddies from P7 to monitor him as well as all lunch time supervisors being made aware of Axxxx's behaviours and they were told to keep a close eye on him. This is above and beyond any supervision gave to children of the same age or younger at school. At home and during outdoor excursions Axxxx's unpredictable and disruptive behaviour can become so uncontrollable it can be very scary to see what the consequences of his actions could lead to if he did not have the supervision that he needs. Axxxx is at a size now where his strength is making it more and more difficult to restrain him, especially outdoors. In view of this, we now ensure that at home the doors are locked and keys are hidden as Axxxx now tries to run out of the house and go on an adventure on his own. He has got out of the house on his own twice the first time he nearly got knocked down by the ice-cream van and the second time he got into a fight with 2 boys that hit him with a stick and kicked him when he was lying on the ground. Even though Axxxxx becomes very anxious and upset about going out he stil tries to escape from the house to go on an adventure like in his cartoon. Summary Axxxx is a loving child but he has extreme disruptive behaviour that make it very difficult to anticipate what he will do next. Axxx regularly needs restrained or someone to intervene at school, at home and when outdoors to prevent injury to himself, other persons or property. Axxx has poor social skills and limited social functioning abilities with a total lack of danger and an inability to calculate the risk involved in doing something. Axxxx has an average cognitive ability but his useful intelligence is very low. Axxxx has poor understanding of his world around him, he is very niave for his age and turns dangerous activities into cartoon like scripts ie. he will say that it is ok to run onto the road because if a car comes he will lift it up like Buzz Lightyear and fly away with it. Axxx will refuse to walk sometimes depending on where we are going, this will happen in the house before we leave to go somewhere or when we are out and something has triggered him off which could be anything as small as a car beeping its horn. Axxxx has many extreme sensory processing problems which effects his behaviour greatly. Axxxx can become extremely anxious about going outside, he regularly talks about the bad boys and that they are going to kill him. This is in referral to school and out and about shopping etc with me. He even goes to the extent that people are going to kill his teddy who is a great comfort to Axxxx and he will become extremely emotional to the extent that he is extremely difficult to console. Axxxx will run senselessly onto the road without any realisation that a car will come and knock him down, he genuinely thinks he invinsible to dangers altogether. Axxxxx has difficulties with instructions and conversations, he finds it difficult to make his needs known and has word finding difficulties. This can lead to some of Axxxx's behaviour problems. It is extremely difficult to gain Axxxx's attention and when I have his attention it is very short lived, it may last for 1 minute possibly 2. Axxxx is very difficult to handle when something happens that means his routine has to change, he can be very explosive and extremely violent. Axxxxx has a behaviour specialist that comes out to help him in school twice a week, this helps Axxxxx's teacher with reward charts and different help to encourage Axxxx with concentration, behaviour etc. Also, I see a Behaviour Specialist in Nxxx Family Centre and she help me with different techniques to try at home to help encourage his behaviour and work with routines and social stories. When out in the car with Axxxx he can be extremely scary, he has now worked out how to take his seat belt off and before the car stops he opens the door and tries to jump out. He nearly thrives from scary experiences. We feel that any further assistance the DLA can provide us will have a tremendously positive effect on Axxxx's quality of life, as well as that of his carers. Axxxxx's claim to seek the high rate of the mobility component is, in our view, fully justified and warranted on merit. Axxxx's case shows that he does satisfy the conditions in accordance to the regulations by Social Security Contributions and Benefits Act 1992, Section 73, parts 1 to 4 and therefore Axxxx should qualify for the high rate of the mobility component of DLA.

Thanks for the reply and I totally get what you are saying about fighting it and maybe losing high rate care, I just really don't think DLA understand how unaware he is. He will climb anything even with the one hand, he has no sense of danger at all!!! He turns everything into a cartoon like if I try to talk to him about running out on the road and a car might come and knock him down, he will say that he'll lift the car and fly away like Buzz!! He just thinks he is invisible. I found a good letter online that gives different quotes and references so I have wrote a letter out for them I hope it is OK. My other problem is I am going on holiday next week and I have until the end of the month to get my appeal in so I really only have until the end of this week and I still haven't received the GL24 form from them. They are so laid back it is unreal. If only life was as easy for us as it seems to be for them. How the other half live, eh? Oh, I am just ranting now, lol Tracy xx

No, I haven't had any advice from anyone, I really don't like to talk to people about problems and issues we have as a family, hence why I am online lol No I have got very low from my son has been born and I nearly hide in the house as much as I can. This sounds really bad lol but you know what I mean??

We are still waiting for his assessment for his statement but the school has told me not to be suprised if he has to go to the Primary Behavioural Support Unit for school to see if this helps, at the minute the teachers from that school are coming out to him twice a week. I don't know about the diagnosis I haven't even received the report yet but I must say I hear people saying that it takes forever for a diagnosis he met an OT and SALT professional at the family clinic once and we left with a diagnosis. I am neally half expecting in a few years to be told that it is worse than they thought. They said the reason so AS and not ASD was because his IQ is average. I thought you could have an average IQ with ASD also???

So here goes, lol. My son has only recently been diagnosed with asperger's and I am in the middle of filling in DLA form for mobility. He already receives high rate care because of his behaviour problems etc and the fact that he was born without his left hand. Poor boy, he really has been dealt a tough life my wee soldier!!! But as I was saying filled in forms and they got back to me saying that he didn't meet the criteria so I asked them to look at it again, again they say he didn't meet the criteria so I asked for a letter in writing of why and I got a letter saying that he didn't need any extra supervision than any other 5 year old. How can they say this? His school have to take a classroom assistant from another class to help him 1-1 until his statement comes through! If this is not needing extra supervision I don't know. He constantly tries to run away- at home, in school or when out and I mean run away. He will unlock the front door when I'm hanging the washing out. He really is mustard. Has anybody any advice on what I can do or say to show that he needs extra supervision that other children the same age? This isn't a typical 5 year old? Is it? I am starting to think I am making a mountain out of a molehill but everyone is telling me he should be entilted to Mobility? Oh I don't know?????? Very confused mother lol

Hi, I live in Northern Ireland, my son was born with his left lower limb missing just below the elbow due to an amniotic fluid band in pregnancy, When he was 3 and started nursery his teacher had concerns about his development and these concerns have grew larger by the month, now he is in P1 and we are still fighting with doctors and paediatricians about Autism. Everything has been a battle, trying to get a Statutory assessment, DLA, getting appointments, even to the point that no-one knew of a diagnostic clinic and I mean no-one, not the doctor, the teacher, senco etc. I went on the computer and eventually found a clinic that take parental referrals and are willing to diagnose my son- rather than be palmed off. I have had it!!!! How many other people are there in my area being palmed off with the same problems as me. No help out there for them what-so-ever. I want to start up a support group or something along them lines where I can share what I have learned and other people can share what they know and together we will maybe be able to get a full answer of how to help the children of our community. I don't know how to do this though. I would love in a year or 2 to have a place where people can come in to get advice, for possibly youth clubs, summer schemes etc for the kids to get together and to know they are not on their own, there is people just like them everywhere. Also, being able to socialise with each other would hopefully make such a big difference to all their lives. My community needs this but how do I start? How do I get this started and then how do I expand it to become a haven for these kids??? Please help.

That's great Kathryn, I am just really struggling to put it into words? It is really hard, I didn't think the appendix A was as hard as this. I go over Ipsea again, I have went over it and over but still come out at a loss. Thanks again for your time,

Hi, If anyone has help for me here I would great appreciate it. And I mean greatly!!!!! I am completely stuck on filling in this Notice to Appeal to the Special Needs Disability Tribunal. They turned down his assessment and said that they want Behavioural support to go into him instead. This is for 2 hours a week, how can this possibly help anyone? I have all forms and paperwork here but I don't know what to put in. I am no good with words etc and I am at a total loss. I got great advice on how to set it out........ My child's difficulties How they affect him in school What extra help the school have given him so far Why this help hasn't been enough What my child needs now which is great but I have no clue what to say in each part. The school has told me to say things about home too, like how his sleep pattern is so bad and him getting up so early could have a direct effect in school etc. Has anyone got a link or anything that would show me an example someone has put online? Just so it is a guide that I can follow and use all there big words I would love to know what legal issues I can refer to. A big thanks to you all for taking your time to help, mummycanhandleit xxxxx

That's great KWJD, I am sure it is nearly like closure to have all your worries put down in a medical term, hopefully noe the professionals will start to help your son throughout every difficulty he has. I wish everyone could be so lucky to get things moving this quickly. Take care xxx

Right, this is my rough draft of my appeal letter. I have ticked all boxes etc I should have and then they say..... (Please note that your appeal may be delayed if you do not fill in this section) My reasons for appealing are: That Ashton needs 1-1 teaching due to his varios difficulties. Ashton was born with his left lower limb and hand missing due to an amniotic band in pregnancy. This causes Ashton great difficulty in craft activities when attending to them independantly. He also needs assistance with packing his bag, putting on and taking off his coat and changing for PE. Ashton was referred to Occupational Therapy for an assesment on his sensory issues. The reprt came back with evidence that Ashton presents great difficulty with sensory processing. His significant sensory processing difficulties are Proprioception, Vestibular, Tactile, Visual, Auditory and Oral. Ashton was also given a sensory diet to be completed daily at home and in schoola d advice on making a visual schedule for him. I have enclosed copies of the report and the advice. Ashton has also been assessed by Speech and Language Therapist which has been on going from nursery 2009/2010. The speech therapist said that she found that Ashton's grammar was not age appropriate and that he is not making appropriate use of his pronouns-usually reversing them and that she doesn't think he has the proper understanding of "WH" words. She wants to do further testing for SLI. Ashton is waiting for an appointment with a GP and Occupational Therapy for further tesing of ASD. Ashton's problems are majorly effecting himself and his peers in school as he is constantly disrupting the class. He has a very short attention span and can be very uncooperative. He has great difficulty carrying out instructions and sometimes tunes out so much that he doesn't even hear his name being called or the instruction being given. This is due to there being an overload of auditory stimuli in the room that he just tunes out. His responses to sounds vary greatly with him not hearing his name being called to being oversensitive to loud noises which cause him to cover his ears and cry or shout to drown out the noise. Ashton actively resistes changes to his routine, he will try to carry on with the old activities and will become very difficult to distract, he will regularly become angry and unhappy when his routine is changed. Ashton, also fails to show regard for any hazardous situatiom which other children of the same age would avoid. He nearly seeks out danger. Also, he is very active and can be extremely difficuklt to restrain. Adhton has boundless energy and exhibits extremes of activity. For Ashton's safety and in order for him to meet the curriculum effectively and reach his potential in school he needs assistance from a 1-1 teacher and constant supervision throughout the day. If he had someone to keep him focused and keep reminding him of the rules and what is expected of him I think he would thrive in school. Ashton can be a danger to himself and to the other children in the class if he does not have constant supervision. If Ashton had help he could happily take part in crafts as he would have the help holding the paper etc. If Ashton had 1-1 support he could easily get his sensory diet done daily which would hopefully have a marked affect on his behaviour. For Ashton to reach the curriculum to his potential he will need assistance to help him stay seated in his seat rather than climbing on it or balancing it on the table. Ashton will need help to calm him down when he get sextremely distressed and emotional for various different reasons, he needs help to refrain him from lashing out at the class or diving on them when he goes into roleplaymode but most of all to keep him safe in school and out of dangerous activities. My concerns if Ashton does not get 1-1 support is that he will get so frustrated not being able to manage that he will seriously harm himself. He has already got so annoyed that he was not able to cut the paper himself that he took to cutting his shirt. If Ashton is left for any longer without support it is going to h\ave a major effect on his and possibly the rest of his class' eduction. Also, it could result in Ashton no longer enjoing school and it nearly becoming a punishment to go to school.[/font] I don't know, I am not very good at writing things like this. I think I am just rambling?? Anybody got any constructive criticism? I really could do with it.

Oh dear as I am sure you can tell I am new to all this. I don't know what he was turned down for, lol. Have you ever!! I tell you what they said. If I can find it in amongst all the rest of papers here in front of me!!! Here goes.... On 20th January 2011 the Board wrote to tell you that it was considering whether to assess A's special educational needs. Details relating to the criteria for statutory assessment were set out in Explanatory notes attached to that letter. The Board has given careful consideration to all evidence in relation to A's needs and has decided not to make a statutory assessment of his special eductaional needs at this time. A recent meeting of the Statutory Assessment panel considered the information on A including reports from school, the Ed Psychology service and the Northern health and social care trust, OT service. The panel noted A's main difficulties appear to be emotional, social and behavioural development and recommend that he should be referred to the Primary Behaviour Support Service. Then they go off on one, bla bla bla, if you wish to appeal bla bla bla. Does this help lol. I am just lost here

Hi, No I am in Northern Ireland. I think the IPSEA site is for England and Wales. I just don't know what to put in the reasons for appealing. Obviously I am appealing because they turned my son down. They have all the information from when we first applied???? Seriously you would nearly just think they want you to give up. Why can they not try to help and support parents whos children have special needs rather than make everything such a battle? I am really getting fed up fighting!! I am sitting here, my kitchen table completely full of paperwork and I don't know what to do with any of it. Has any one ever had to appeal before and can give me a clue at what they write? Thanks for your help Tracy xxx

Hi everyone, Any advice would be greatly appreciated. I have just received my "How to appeal" form and I was wondering if anyone knows exactly what needs put in and what does not. I am so lost with this stuff???

Hi Suze, what is CAMHS? Yes, he has an IEP, has been on it from nursery. The school suggested at the beginning of the year to apply for a statement but it was turned down with the provision that a behavioural specialist goes into see him in school. I am in the middle of talks with the school about appealing.

Hi I am new to posting but really am lost in where to turn next I have been reading possibly over reading on the internet about spectrum of ASD. My sons senco thinks there is ASD there but it has just been left like that. Ok, a bit of history...... I am going to do it point form nearly rather than a story because it would be too long and bore you My son is 4 will be 5 in May. ( Is this too young for a diagnosis?) He is in P1 and all trouble started in nursery. He had an absolute obsession with dinosaurs but now that has passed. He wants the most inappropriate things, ie door wedge He has always been an active wee boy, summersaults on chairs, head stands etc no matter where he is whether appropriate or not. He strips in the most embarrassing places, his tantrums are unbearable. His teacher would say that he seems to make eye contact but it is more like looking through you than at you, I agree with her but my husband does not. He is very sure that there is nothing wrong- I think reaction of most fathers at the beginning. He is extremely fear free. Tries to run out of school building and school grounds. Runs off on me and would cross the road with no concept of a car coming and knocking him down. He would make it into a cartoon and say something like "I fly like buzz and I get the (shakes fist) car" His speech is coming on a bit now but his grammar, understanding, knowledge and "wh" words are very delayed. Speech therapist testing for SLI. Ot has just diagnosed sensory problems with tactile, auditory, proprioception, vestibular, oral and visual. When you call him sometimes he is so tuned out he doesn't even hear me. He has extremely sensitive hearing, covers ears and cries with school bell. Poor spacial awareness Unable to tell past or present stories Clumsy, Would fall to the ground just for the sake of it Immature behaviour, extremely noticeable when he is with his peers Very picky eater Poor appreciation of social cues Social and emotional inappropriate responses Limited shared activities skills like board games age appropriate, Will watch same film over and over He is extremely heavy handed when hand writing His drawing ability is immaturish. He spins and spind=s without getting dizzy I can't think of anything else but if there is anything that would help and you would need to know I will by all means tell you. I am so desperate I really am, He has seen Community Paediatric who thinks it is all behavioural but she didn't even see sensory problems Speech Therapist is going to talk to school about SLI OT is wanting to see him again about ASD He is going to see GP hopefully to referr him to someone who can him and I answers. Does this sound like ASD?P I think so????