Hi guys, my 10 year son has been referred suspected aspergers/HFA.
DLA was refused so I have asked for a MR over the telephone and have wrote a supporting statement and my reasons for disputing the decision. Just wanted some advice on whether it sounds ok or if it’s too lengthy before posting it.
Re: Alfie James Samuel Donnan
I am writing to you to explain my reason for asking for a mandatory reconsideration for my Son Alfie Donnan.
I am appealing the decision as I believe that Alfie is entitled to both the care and mobility rates of DLA.
Although Alfie has no confirmed diagnosis, he has been referred for specialist help for suspected Asperger’s Syndrome/High Functioning Autism and coordination and communication difficulties and I believe that his needs are in excess of another child of his age.
In your decision, you stated that Alfie is able to walk up to 200 metres unaided and that there is no evidence of a cognitive impairment that would prevent him from attending age appropriate road safety awareness. I disagree with this statement for the following reason:
Alfie becomes very distressed about going places that involve walking, going to school for example. Although it is only a few minutes walk from the car, it is a huge battle every day. In order to get him to go and keep moving without difficulty, I have to soothe and calm Alfie constantly. I hold his hand because this helps keep him calm and means that I can restrain him if he starts to get distressed or panic. When he panics, he has been known to act impulsively and run into the road. By contrast, most of his peers now walk to and from school on their own or are left outside of the school gates alone. This is something I can not imagine being able to do with Alfie for a very long time. Therefore I do believe that the guidance Alfie requires is outside of what is considered age appropriate.
Alfie is intelligent and articulate but his social skills are extremely limited and his reaction when the world gets too much is uncontrollable distress, in a typical fight or flight action. In those situations, he will either run onto the road, as mentioned earlier or sit on the floor with his head in his knees and refuse to move in which case I have no other choice but to lift him from the floor. In this situation, Alfie will resist and kick, scream and try to wriggle free.
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 and inability to calculate risk”. I believe that the examples of Alfie’s behaviours such as running out in front of moving vehicles demonstrate this. Despite yearly age appropriate road safety awareness sessions at school, Alfie continues to run into the road. We talk about road safety daily when crossing a road and have used various strategies to try to help Alfie process this information including songs, pictures and poems to no avail.
The decision also stated that Alfie has good behaviour at school and there is no precautionary supervision in place for Alfie. I agree that Alfie is well behaved in school in terms of not being physically challenging or rude to his teachers, however, his behaviours present themselves in other forms. There have been numerous occasions where Alfie has not fully understood the task asked of him and rather than ask for help he has sat and done nothing at all, meaning he has not completed any of the work asked from him. Alfie expresses his frustration and anxiety at school through emotional distress and avoidance. For example, on the run up to a recent class assembly which was being performed in front of the school and parents, Alfie demonstrated distress and anxiety and as a result remained seated at the back of his peers and refused to engage with the singing and dancing taking place. Although there is no formal precautionary supervision in place at school, the staff are aware of Alfie’s difficulties and as a result Alfie can access the reading corner during times of distress if need be and there have been exceptions made for Alfie so that he can go straight into the classroom in the morning or during break if he needs to be away from the playground and seek reassurance from staff members. Staff are also extra vigilant and are beginning to recognise the signs of Alfie becoming anxious about something. Alfie has learned passivity and tries so hard to cope and hold his emotions at school and then fully releases them when he gets home
The reasons behind the decision also stated that although you appreciate Alfie requires prompt and encouragement at home and has a safe space to go to at school if required and support during exams, there is no evidence of a close and personal nature in relation to his bodily functions frequently throughout the day or that help with personal care is not needed for an hour or more. I dispute this statement for the following reasons:
Following on from above where I have demonstrated that there are allowances in place for Alfie at school, I have enclosed a copy of an email from Alfie’s school teacher who states that Alfie struggles to ask for help and that encouragement is needed here and prompt is needed on occasions as he appears to have other things on his mind. He is also encouraged to slow down whilst talking so that he can have time to think about what he is trying to say, this is a classic symptom of Alfie’s anxiety levels being high. He is also currently receiving extra support and intervention groups at the minute. His teacher has also stated that there are times in the classroom when Alfie requires one to one time with a teacher to go through a task if he does not understand it. Alfie also has to have constant reassurance during tasks and his teacher has verbalised to me that she has to remind him that everything is going to be ok, lets him know how long is left before the task finishes and has to mark his work first and let him know how he has done which appears to calm him down. He can also become distressed if he feels he cannot communicate how he’s feeling. This is care and treatment that, if withdrawn, would cause considerable distress for Alfie and if were taken away from him, may make him unable to tolerate mainstream school.
At home, Alfie requires a substantial level of care that I believe exceeds the level of care another child of the same age would require. Alfie often feels overwhelmed and needs encouragement and soothing to get up, get dressed, eat his breakfast and get washed and ready for school. As upsetting for me as it is, I have taken videos of Alfie having a “meltdown” in the mornings because of how stressful he finds the whole process. Alfie is hypersensitive to touch which makes it difficult and upsetting to brush his teeth, brush his hair and wash his face He will often refuse to brush his teeth and has to be supervised when completing his care routine so that he does it properly and without supervision he would never wash his face, brush his hair or brush his teeth. Alfie also needs attention and supervision when eating his breakfast as he gets very easily distracted and would eat nothing at all if not supervised. Alfie also needs instructing in which order to get dressed for school and to ensure his clothes are on correctly. He has incredible difficulty doing up buttons on his shirt and when he has managed to do so in the past, they have been done up in completely the wrong order, he also often would put his clothes on inside out or back to front, most ten year olds would be able to do the above independently. He often comes home from school after a PE session with his clothes on the wrong way round etc. Alfie has anxieties around using the toilet for a poo anywhere but home and needs encouragement to go to the toilet at home in the morning if he feels able to avoid any discomfort during the school day. There has been an occasion at school in the past where I have had to collect Alfie from school so he can come home and use the toilet. Also, due to Alfie’s coordination difficulties, he finds it difficult to wipe himself properly and in the past has become quite sore. I now have to wipe Alfie’s bottom for him after he has attempted to do it himself every time he uses the bathroom and encouragement and prompt is required to get him to wash his hands.
In the evening Alfie needs extra support at dinner times, such as me cutting up his food (he cannot use a knife and fork) and encouraging him to eat. Alfie is scared of baths and showers and will avoid them at all costs. I think his fear stems from him attending swimming lessons at a young age with a group of other children and he didn’t like the crowded environment and a one-to-one session with a swimming instructor in the water would have been more beneficial for Alfie and something he is keen to do to overcome his fear and to be able to swim like his peers. However, he also avoids them due to his sensory issues with water. He has a bath daily and we have to go through a whole rigmarole of encouraging and calming him to make this happen. Even then he becomes very upset and becomes verbally aggressive and tries to physically prevent bath time from happening. Due to his fear and lack of awareness of personal hygiene, Alfie is supervised continuously. This is not something I ever had to do with my other two children when they were his age. He then needs help with drying himself and getting into his pyjamas. Alfie needs a significant amount of support when completing homework out of school and doing his daily reading task. He cries almost hysterically daily when having to do this and cant process why he has to do school related tasks when he is at home, this results in the same conversation every single day that it is a requirement of the school. He is stuck between the emotional distress of completing these tasks and the fear of being in trouble at school if he doesn’t complete them, which exacerbates his anxiety further. During this period Alfie has become physically violent and destructive, throwing things across the room, ripping his homework up and physically attacking his 13 year old sister on two occasions when she was trying to help him which has resulted in me physically having to lift him off her because he was kicking and punching her. I feel that this evidence demonstrates that Alfie does indeed require attention of a personal nature in relation to his bodily functions and is in excess of a child of his age.
The report from the DWP said Alfie didn’t need help at night but one of the most challenging times for Alfie is bedtime. He needs up to three to four hours more help to stay calm and In bed, and supervision to help him stay safe, than another child of his age every night when I would otherwise be in bed. It appears to be the time where his anxiety levels are higher than any other time of the day. He becomes obsessive over certain things and will talk about whatever his current obsession is at that particular time for hours on end when its time for bed. It also appears to be the time when Alfie analyses and overthinks things and will discuss his anxieties whether it be about how bad he did in his spellings that day, his worries about his upcoming residential trip in April, worry about sex education classes how awkward this is going to make him feel, his SATS, his lack of friendship groups etc. These are just a few examples of the type of things that play on his mind and he cannot sleep as a result of them. He also cries himself to sleep regularly because of these concerns and again I have videos of Alfie discussing his concerns and getting upset at not being able to sleep, amongst other things, most of the videos being taken at well gone midnight. Although Alfie complains almost all of the day about feeling nauseous, this presents itself more at night and he will say over and over again that he feels sick and cannot sleep. As a result of this Alfie requires a lot of reassurance to help settle him to sleep and I am still often doing this at between 1 and 2am. He also wakes on at least three occasions throughout the night, whether it be because he’s lost his dummy, having a nightmare or for me to accompany him to the toilet, this has resulted in me sleeping in the same room as Alfie as he panics when he wakes and each time it takes me up to 30 minutes at a time to resettle him. Last night in particular was an extremely challenging night as one of Alfie’s teddies that he sleeps with had been spoiled by a drink earlier on in the evening and needed to be washed as a result. Alfie was incredibly upset by this and woke numerous times in the night crying for it. I appreciate that Alfie, given the waiting times for his referrals for specialist support, has no clinical intervention to help with his sleep and anxiety issues. However, we have tried to implement strategies such as watching age appropriate meditation videos or listening to calming music designed for children with anxiety and sleep problems which appear to calm him slightly but does not reduce the amount of time it takes to settle him to sleep. We also have a doctor’s appointment on Monday 19th March to discuss these issues again and see if there is anything he can do whilst Alfie is waiting to be seen by the community paediatrician. This is why I believe Alfie meets the criteria for requiring prolonged supervision at night.
Alfie needs reminding and encouraging to do almost anything and constant reassurance and attention throughout the day. I strongly feel that the attention and supervision he requires is above and beyond that of a typical ten year old child. The emails enclosed from Alfie’s school confirms his difficulties from school.
Kind regards