DLA Mandatory reconsideration for 9 year old

pregwithno4

Hi, so ive got a statement of reasons over the phone today and started writing everything out.
We were flatly refused our renewal, I think maybe because I didnt include enough information.

My son has Aspergers and Perthes disease.
I would really appreciate my MR looking over before I send it in.

MICHAEL HAS PERTHES DISEASE AND NEEDS ONLY MILD PAINKILLERS

Anti-inflammatory medicines, such as ibuprofen, are used to reduce inflammation. Calpol is then given
to help with pain. This does not get rid of his pain completely but helps the pain to become a bit more
manageable along with heat therapy (bathing with epsom salts) and muscle relaxing massage techniques.
Michael is not given strong painkillers as he needs to be able to function so that his education
is not affected more than it already is due to his Asperger's syndrome.


CONDITION IS VARIABLE WORSE WHEN COLD.

This statement is true that the condition is worse when the weather is wetter or colder due to cold and damp
affecting Michaels joints, this however is Britain and we have a lot of cold wet weather and find that Michael is in pain
a majority of the time, mainly night time after an active day (every day is an active day with an autistic child).
He also suffers with a considerable amount of pain in the summer months, although his pain in cold weather
is worse I feel I focused on this more than I should because the pain in summer months is still very relevant
and I feel that this has been disregarded.



MOST OF THE TIME HE IS ABLE TO WALK OUTDOORS

Michael is able to physically walk outdoors albeit a little slower when he is in pain with his hips I agree which I fully understand
he should not be entitled to HIGHER RATE Mobility.
Michael must have his wheelchair present when we are outdoors for a prolonged period. He uses his wheelchair when he gets tired and pain
becomes unbearable.
Michael needs constant supervision and guidance outdoors due to his Asperger's, he has to have his hand held with a tight grip by mum or dad or he wanders off.
He has severe and unpredictable outbursts and self-injures and attacks parents and people around him.
If he is in his wheelchair, the straps have to be secured at the back to avoid Michael unclipping himself and running off.
Michael has very bad mood swings, is physically aggressive to mum, dad, siblings as well as general public & if we are out i have to get him
home very quick. Mum or dad use a wrist strap if Michaels behaviour becomes extremely hard to control and this happens 80% of the time he leaves
the house.

Runs into the road constantly, has no road awareness.
we constantly have to have the door locked because he sneaks out of the house.
his autism means that he gets overwhelmed with sensory needs and over excited this turn to bad behaviour.
Physically restraint is needed when out but physically restraining him makes him more angry.
We have other children aged 14,12 and 7 and non of these children need to be physically restrained when out because they are a danger to themselves.
This is why I feel that Michael qualifies for lower rate mobility.




DOES NOT REFUSE TO WALK MOST OF THE TIME

Michael sits on the floor nearly every time we go out of the house and refuses to walk, If we try to get him to walk, Michael becomes physically
aggressive with mum and dad and people around him, has to physically be lifted into his wheelchair if we are in a rush or have to go somewhere.
An example of this is when Michael refuses to walk to school, he has to be physically restrained in his wheelchair in order to get him to school on time.
When out if he becomes violent we have to carry him to a safe area if there is one available where he isn't a danger to himself or others.
I did write that this only happens sometimes, this is because we avoid going out because of this behaviour which is not normal behaviour for a
9 year old child.
Therefore feel he requires a lot more care needs when out.
70-80% of the time we start to do food shopping or a family outing and this has to be abandoned because of Michaels extremely violent behaviour.
Michael often hurts his mums back because he goes floppy and refuses to walk and the weight of a 9 year old boy is a lot to support.


ASPERGERS SYNDROME SEES A SPECIALIST

Michael saw the relevant specialists when being diagnosed with Asperger's syndrome. Since his diagnosis he has not been seen by specialists because
there is no cure or treatment to solve Asperger's, this is a condition that Michael will have for life and something that both Michael and his family
have to learn to live with and adapt too.



DOES NOT HAVE AN IEP IN PLACE

Michael is slightly academically behind but does not qualify for an IEP, this does not mean that he does not require additional help. Michaels
needs are more surrounded to his physical behaviours, and his understanding of the world in general and what's going on around him
and the fact that academically he copes with school, but mentally he struggle to fit in with his peers, other pupils and his surroundings.
I feel that an IEP is irrelevant in assessing Michaels needs.
not all autistic children are far behind educationally its there social skills that are failing and I feel that this has been generalised.
now his behaviour is becoming out of hand we are seeking to get an ECHP plan for support but are aware that this can take months or even years.

DOES NOT NEED HELP AT SCHOOL

The characteristic of a child with autism is that they may behave differently in the very structured environment
of a school compared to when they are at home.
children at school have to be almost continually supervised for the school to run properly, so we feel that Michael may
not need supervision over and above that which is normally given to all other children while attending school.
However, Michaels disabilities need supervision beyond that needed by other children when outside school or in the school playground
in order to avoid substantial danger to himself, his family and other people around him and it is that supervision which we feel needs to be
considered when deciding entitlement.
The school has to prevent injury from common dangers in the first place,
staff are trained in dealing with day-to-day enforcement of the health and safety policy in accordance with the Law
to prevent liability which means there are fewer accidents as there are fewer common dangers in schools.
We have spoken to national autistic society and have been made aware its very common for children to be self contained at school
in lesson and have meltdowns at home.

We also would like to add school day is not a full day and care component should be judged on a child's supervision and care needs
over a full 24 hour period not just 6 hours of school.


SCHOOL HAS NO MAJOR CONCERNS WITH MICHAEL IN THE CLASSROOM

Although school have no major concerns in the classroom, the classroom is a very structured environment which is continually supervised.
his head teacher and classroom teacher have major concerns regarding his behaviour outside the classroom, in the school playground and
towards pupils and staff in the school.
Michael is aggressive both physically and verbally with others around him in the school environment and has come home on a number of
occasions with incident forms from the head teacher, outlining Michaels behaviour and his concerns regarding his behaviour.
He is concerned that Michael cannot recognise that physical violence is not an appropriate way of dealing with incidents
involving other children and this is because of Michaels lack of understanding to other peoples thoughts and feelings and his lack of
being able to read other peoples emotions.
I feel that his behaviour outdoors , which is a very big part of school life, 1.5 hours out of his 6 hour school day is spent
outside in the playground and this has been disregarded when considering how Michaels Asperger's, affects his school life.
I have sent reports along with a letter from his head teacher outlining his concerns.



HE SHOULD NOT NEED SUBSTANTIALLY MORE SUPERVISION INDOORS OR OUTDOORS MOST OF THE TIME

Michael needs constant supervision when both indoors and outdoors because of his physical aggression towards his siblings, his lack of sense of
danger. I have to wash him, force him into the bath, sit with him whilst he has a bath, wash his hair, physically brush his teeth all whilst physically
restraining him.
He doesn't wipe his bottom properly but doesn't let mum or dad wipe him and leaves himself dirty and sore.
His pants are dirty and after a day at school he always needs a bath which causes him more distress
He wipes hands down the wall and in the family bathroom.
he smashes holes in my doors and my walls have cracks in them. Michael has a calm down tent area that is secluded, we need to remain close
so he does not cause himself harm and the tent supplies a safe area for Michael to calm down.

Feeding need substantially more supervision as he has huge problems with food, will only eat certain foods,
doesn't concentrate long enough to eat meals meaning that he needs to be watched so he will actually eat a meal. Michael also makes himself
physically sick if he has to eat a meal he doesn't want too.
Michael throws food at the walls, on the floors in temper on a daily basis.
Michael refuses to eat most foods that the family eat meaning that more time is needed to cook separate meals for
Michael that mainly consist of noodles and pasta.
He wont eat if someone's watching meaning that mealtimes take twice as long as his siblings have to sit
at the table where he eats and he wont eat until they are finished. He wont eat if someone's touched his food and becomes extremely agitated
and aggressive with anybody that goes near his food. This is not normal behaviour and 9 year old children do not need constantly watching
to eat a meal.

He needs help outdoors because he is a runner so I have to hold his hand with a tight grip all the time and use a strap for extra security.
He has severe anger issues and flips at the slightest thing so we tend to go out on necessary trips only. Michael needs constant supervision
outdoors, far more than a child of his age and guidance outdoors due to his Asperger's, he has to have his hand held with a strong grip by mum or dad or he
wanders off.
His behaviour and meltdowns are severe and unpredictable and he self-injures and attacks parents and people around him.
Michael has very bad mood swings, is physically aggressive to mum, dad, siblings as well as general public & if we are out i have to get him
home very quick. Mum or dad use a wrist strap if Michaels behaviour becomes extremely hard to control and this happens 80% of the time he leaves
the house.
Runs into the road constantly trying to get away.
This is far more supervision both indoors and outdoors than a child of his age.



HE SHOULD NOT NEED SUBSTANTIALLY MORE HELP WITH PERSONAL CARE

Michael needs constant assistance for around 30 minutes in the morning just to get him awake and out of bed because he is so tired from being
awake during the night. Michael wont get undressed for bed, when I try to get him undressed he just goes floppy so its like undressing a dead
weight. Michael refuses to put his pyjamas on, I have to dry Michael after he has been bathed. Michael has sensory issues and can often need
dressing and undressing a number of times if clothes don't feel right or he feels like they are irritating him.
Same with dressing in the morning, he wont get dressed and his dad has to hold him and mum has to physically dress Michael whilst he
is completely floppy, this is extremely difficult. He flatly refuses most of the time.
Mum and dad have to wash him, force him into the bath, sit with him whilst he has a bath, physically wash his hair,
brush his teeth all whilst physically restraining him.
This is considered substantially more help than a 9 year old child, who would be expected to be able to bathe alone, wash their own hair, dress
themselves.


SLEEP ISSUES ARE BEING ADDRESSED

Michaels sleep issues are not being addressed, there was a statement in his diagnosis report that said we were addressing the sleep issues
but the advice we were given was to keep sleep diaries. I don't feel that this addresses the issue. It doesn't help Michael to sleep
and he is still awake until the early hours and waking in the night. Michael has had sleep issues for the past 5 years and these issues have not
resolved. Therefore I feel they need to be taken into account when assessing his needs.


HE SHOULD NOT NEED REPEATED OR PROLONGED CARE IN THE NIGHT

Michael does not go to sleep until 12-1am. The household shuts down for the night at 10pm, everyone goes to bed.
We are continually in & out of bed trying to settle/re-settle Michael.
By 11pm, he is still not settled & it has a bearing on the rest of the household.
It is disturbing his siblings from sleeping & unsettling them.
We then have to get up from bed & take Michael downstairs (so the household can sleep).
At around midnight we take Michael back up to bed & sit with him until he falls asleep (this can take between 30mins & 2hrs, depending on how Michael is).
Michael paces the floor and becomes extremely anxious if hes put into his own bed, he makes himself sick and hurts himself so he can sleep in bed with parents.
He does often end up sleeping in our (the parents) bed just so we can get some sleep.


Michael messes near the stairs,
he plays with windows and lives in a 3 storey household would climb up and potentially fall from a window if not watched and windows are not locked. Michael has been found
dangling toys out of the windows when he is put to bed.


He wakes during the night at least 5 nights a week and most of those nights he is wet. He has to be undressed, bathed, bedding stripped and
remade.
We feel this entitles Michael to high rate care as our night times are horrible, he keeps his siblings up at night and stops them sleeping.
We have to hide the keys when its bedtime to stop him from getting outside.

I feel that a child of Michaels age is capable of being put to bed and should be going to sleep around 8-9pm. Our 7 year old daughter has no
issues with sleeping or staying in bed therefore we feel Michaels nighttime issues are from his aspergers.

GlasweJen

It's a bit long and rambly.

Do you have the original written decision? I would recommend you take some emotion out, what you feel is irrelevant.

Write something like "for help outdoors the decision maker has written that Michael does not need supervision. In reality Michael needs supervised as he does not understand danger so regularly attempts to run across roads. The enclosed letter from Michaels [specialist] supports Michaels lack of a danger awareness".

Start with which question from the form you are challenging, what the DM said, why you think it's wrong and point to any evidence you have enclosed to back up your claim. Keep out emotion and your own views because the DWP will disregard it unless you're backed up by a medical professional.

WeAreGhosts

I agree it's a bit long and rambling, but there also needs to be extra information in there - giving examples, such as "He has severe anger issues and flips at the slightest thing so we tend to go out on necessary trips only." What does he flip at? Pick the most ridiculous thing you can think of that he flips out at and give it as an example.



Always include reports from medical professionals, if you haven't already done so ...

pregwithno4

Ive been told by a few people its too much so ive decided to cut it right down.
I have a lady coming tomorrow who is going to help me but here is what I have so far.

When outdoors (and indoors) Michael has no sense of danger will wander off and pull away if something is spotted he wants to look at.
We need to keep a tight grip on Michaels hands to stop him from being a danger to himself or others.
Michael will hit strangers, verbally abuse anyone without thinking of repercussions of his actions.
Will suddenly yank hard and pull away from us and try and run into the road.
Will approach dogs and other animals without thinking they could bite or be a danger to him.

When in shops he will Pull on shelves, try to climb up things and put products in his pockets not realising they need to be paid for.
Will Refuse to walk to school, sit on the floor and go floppy refusing to move,
hang onto every lamppost and kick, scream, bite and hit the person restraining him.



With a combination of pain, and the frustrations of life with Aspergers Michael does not settle well in bed.
He is repeatedly back and forth to our bedroom or coming down stairs to "chat" or "get a drink".
He is physically put into bed. Once retreated out of Michaels bedroom he is behind us and when spotted makes a
lot of noise messing and playing.
It can take anything upto 2-4 hours to Settle Michael into bed and off to sleep.
Michael then wakes repeatedly throughout the night waking parents and siblings and attempting to "play" as Michael has no
consideration for others of what time of night it may be.
If left to his own devices when awake at night, would put himself and others in danger he would try and go out of the house,
he Will try and open windows and jump out or open doors and leave the house wide open for strangers to enter or play with kitchen utensils
and try to gain access to sharp knifes.
Parents go to bed at 10pm but are repeatedly woken up by Michaels messing and "play"
Michael needs consistent night time monitoring for his and our safety, he also suffers with pain due to Perthes Disease
and this can be the trigger to him being awake or woken up, Michael is awake multiple times per night
either due to Aspergers or Perthes Disease where he requires pain meds and comforting and monitoring which takes 20-60 minutes to
settle back into bed this happens every night of the week.
Michael is given Ibruprofen as this is an anti-inflammatory and Calpol to ease the pain enough for him to be able to get back to sleep.


Personal care needs are much more than that of other children his age.
Michael needs to be bathed as he does not wash himself, his personal hygiene is very poor.
He sees bathtime as playtime and uses all of our toiletery products
in the bath at once if not watched, He does not realise that some of the items can be dangerous to him.
Michael does not wash his own hair or brush his own teeth.
Michael will not dress himself or get himself undressed.
Michael lies completely floppy when getting undressed for the bath which causes pain to mums back and makes it extremely
difficult to get him undressed.
Michael has sensory issues with materials.
Michaels wears a hood up indoors and outdoors to block out the outside world, this makes it extremely difficult to communicate with michael
when we are outdoors as he tends to shut off, which makes it harder to keep him safe.
Michael refuses to wear certain clothes that he deems are too tight, dont feel right or are scratchy.
Michael refuses to wear shoes if he feels they are too squeezy in the wrong places.
This makes clothes shopping extremely difficult.


The characteristic of a child with autism is that they may behave differently in the very structured environment
of a school compared to when they are at home.
children at school have to be almost continually supervised for the school to run properly, so we feel that Michael may
not need supervision over and above that which is normally given to all other children while in the confines of the classroom.
However, Michaels disabilities need supervision beyond that needed by other children when outside school or in the school playground
in order to avoid substantial danger to himself, his family and other people around him and it is that supervision which needs to be
considered when deciding entitlement.
We have spoken to national autistic society and its very common for children to be self contained at school
in lesson and have meltdowns at home.


Although school have no major concerns in the classroom, the classroom is a very structured environment which is continually supervised.
his head teacher and classroom teacher have major concerns regarding his behaviour outside the classroom, in the school playground and
towards pupils and staff in the school.
Michael is aggressive both physically and verbally with others around him in the school environment and has come home on a number of
occasions with incident forms from the head teacher, outlining Michaels behaviour and his concerns regarding his behaviour.
He is concerned that Michael cannot recognise that physical violence is not an appropriate way of dealing with incidents
involving other children and this is because of Michaels lack of understanding to other peoples thoughts and feelings and his lack of
being able to read other peoples emotions.
I feel that his behaviour outdoors , which is a very big part of school life, 1.5 hours out of his 6 hour school day is spent
outside in the playground and this has been disregarded when considering how Michaels Asperger's, affects his school life.
I have sent reports along with a letter from his head teacher outlining his concerns.

[Deleted User]

Remove the statement about 'mummy's back', just make it a description of his needs.

Don't put things that don't need to be there.., like agreeing that he doesn't need extra supervision in school.., it doesn't help you. Use terms like 'gets overwhelmed, is unable to pick up cues, needs social support.., etc. Show how he DOES need extra support only. Otherwise you are arguing for them, not for the case you are making!

For example.., you put "With a combination of pain, and the frustrations of life with Aspergers Michael does not settle well in bed.
He is repeatedly back and forth to our bedroom or coming down stairs to "chat" or "get a drink".
He is physically put into bed. Once retreated out of Michaels bedroom he is behind us and when spotted makes a
lot of noise messing and playing.
It can take anything upto 2-4 hours to Settle Michael into bed and off to sleep.
Michael then wakes repeatedly throughout the night waking parents and siblings and attempting to "play" as Michael has no
consideration for others of what time of night it may be. "

Sleep Issues Are Being Addressed: I'd think of putting "Michael is x years old but still has sleep problems, in spite of following advice we have been given. I would not expect this with a x year old. We follow a regular routine but it still takes 2-4 hours to settle him til he goes to sleep. He has fine motor control problems and is unable to undress and dress himself.

Part of his regular routine is a bath. He is unable to get in and out of the bath because of his condition, he experiences a lot of pain on moving, so I need to lift him in and out of the bath and assist with dressing and undressing. I have to be careful to xxxxxxxx because this stresses/causes pain for him. I have to watch him and wash him as he doesn't understand safety in the bath, can get too active with his playing and fall, he also plays with any bath substance he can get his hands on [although i would suggest these should be removed, its what I had to do].

The sleep issues have in no way been resolved and trying to address them have in fact extended the care he needs.

He should not need repeated and prolonged care at night: Once asleep he wakes frequently and then it takes x mins hours to resettle him. He is unable to understand that this is inappropriate night time behaviour. This happens x times a night" (they want to calculate how much extra care he needs at night, giving minutes helps).

If he gets stressed, say he goes into meltdown. If he has fears, (my son was convinced for three months that there was going to be a tsunami every night, at the moment its snakes). Does your son have night fears? Does he have toileting problems. Any night time problems, list them and say how long it takes to settle him. Give short examples. For example, if my older son got up in the night, he'd get a chair and go in the kitchen wall cupboards, which is unsafe. I tended to not sleep at all because he had no sense of danger and would wake up and do this.

Is Able to walk outside most of the time: He easily gets overwhelmed by light and sound, prefers to wear a hood. He has problems in familiar/unfamiliar places. This means we have to be on the watch constantly outside and inside the house because he panics and he has no safety awareness (give example). Because he can panic when walking we have to hold on to him constantly and be aware of his mood. He can not walk safely unescorted, without someone holding him (give example). He has been know to attack strangers which poses risks to others (give example). I would not expect to have to do this with an x year old normally.

This is obviously based on my experiences but I hope you get a feel for it. What I have written is just a start, obviously you know your situation better than me.

pregwithno4

Thank you, I just wanted to let you know that the MR is in, its been scanned onto the system and is awaiting a decision maker. Im really hope they "see sense" and I dont have to go to tribunal