Having big problems with Dla

[mummycanhandleit]

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

[Lynden]

To get the higher rate mobility you literally need to be virtually unable to walk, or have a severe mental impairment and I doubt very much an asperger diagnosis would qualify as severe mental impairment, especially if he's in a mainstream school. He would be entitled to lower rate mobility possibly but not higher.

 

My son attends a school for severe learning difficulties and profound and multiple learning difficulties and there are quite a few who don't qualify for higher rate mobility.

 

Lynne

Edited September 12, 2011 by Lynden

[Tally]

Have you had any advice from someone like the Citizens Advice Bureau, the NAS or Mencap? They can often advise on the right wording and help you get what you are entitled to.

[mummycanhandleit]

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???

[mummycanhandleit]

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??

[Lynden]

Just to add - if it's about getting a blue badge and not the money, you can get a blue badge without having higher rate mobility, you just need a supporting letter from an appropriate professional, so phsyio or his paediatrican etc.

 

Lynne

[Tally]

There are some online resources here that might be helpful: http://www.asd-forum.org.uk/forum/index.php?/topic/20218-claiming-dla/

[cmuir]

Hi

 

A diagnosis need not be present for a DLA claim (though, I'm sure it helps) – I auccessfully applied prior to my son receiving a formal diagnosis. For a claim to be successful, you need to cover specifics i.e. has no sense of danger, wanders off, will awaken at 3am and demand a bath, runs off, needs assistance with personal hygiene, needs assistance eating, etc etc. I don't want to put words in your mouth, but tackle it from the angle of a 'day in the life' - starting with waking up, washing, dressing, breakfast, etc etc and cover what the issues are. I was actually quite shocked once I sat down and put everything on paper just how difficult some things are (it's about showing that your child requires much more care than a child of the same age). I can't comment specifically on the mobility part (my son gets low rate, but high rate for care), but my guess would be to consider whether you can go shopping, get out of the car without kiddo running/wandering off, crossing roads, the act of walking (does kiddo tire easily), etc etc. Reports or endorsements are always helpful – ask H/teachers if they would mind if they were contacted/put something down on headed paper, Paediatrician's reports, etc etc. It may be necessary to appeal, however, a NAS member of staff once told me to be very careful of doing this, particularly if you're already in receipt of e.g. high rate care seeking a higher rate mobility (they may re-evaluate and reduce one component whilst increasing another). I know you've said you don't want to talk to anyone about these matters, but it can be really helpful to speak to a local organisation that specialises in helping parents with this sort of thing (I sought help first time around from a charity attached to our local Children's Hospital). Often, it's not until someone else asks questions which make you realise just how difficlt some aspects are.

 

Regards

 

Caroline.

Edited September 12, 2011 by cmuir

[mummycanhandleit]

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

[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.

[Lynden]

There are the names of several different children in there. It may be you've taken bits of different letters so worth proof reading to make sure it's all relevant to your child. I think you need to be careful to an extent as you are saying he is virtually unable to walk but then you are saying he runs away - it was always my understanding that the unable to walk related to physical difficulties (but I could have misunderstood ). I think a lot of what you have said under unable to walk would fit under severe mental impairment. I must say though, his difficulties seem severe for an aspergers diagnosis.

 

Good luck with the appeal.

[chris54]

As I read this, you seem to be talking about care needs. A lot of what you say seems to be contradictory.

Be careful about saying he opens the car door and runs off, cars have child proof locks.

In order for a child to get higher rate mobility they would need to be, for what ever reason, virtually unable to walk. It would be difficult to say a child cant walk but also need supervision because they run off.