Turned down again for Mobility component.

Replies

By loopy

Re: Turned down again for Mobility component.
Fri 15 Aug 2008 16:24

i cannot understand why they have said no. My daughter is severely autistic, learning difficulties, etc etc and we get the mobiliy bit for her. We got it straight away. You should be able to claim it as what you say about autism is true. It is a form of brain disorder. Keep on trying and dont give up. Send every bit of evidence that you have. Phone them constantly. Make yourself be heard cos they have a great habit of forgetting you exist if you dont keep on at them. I would say that you were entitled to claim it for your grandson. good luck.

By Tricia

Re: Turned down again for Mobility component.
Fri 15 Aug 2008 16:47

Write and ask them to explain the reasons for refusal when you have provided evidence that your grandson has mobility problems; this being he is at risk if outdoors to himself and others due to his disablity.

Will be interesting to hear what their reply will be.

By crystalriver

Re: Turned down again for Mobility component.
Fri 15 Aug 2008 17:43

Hi girls,
Thanks for your reply's i have been told by them that he would definetly Not get it because of his mobility problems as he doesn't come under the "Cannot Walk" category. They said it would only be under the "Severe mental impairment"?
I'm totally baffled by it all.
Beverley

By kerry.

Re: Turned down again for Mobility component.
Fri 15 Aug 2008 21:58

Hi Bev,
I was wondering where you had got to! I take it he was not diagnosed with Fragile X?

Back to the point; regarding not being able to walk is a load of rubbish- my boys both got it at that age- tey can walk... and run straight into the road, have no sense of danger to themselves or others, refuse to walk on occasion, sometimes refuse to stop walking! and so on.
This is waht you need to emphasise with your appeal.
The form also asks what you would do with Ethan if you received this money for acar etc.
you need to tell them how you would like to take him swimming, horse riding, meeting family (for socailisation skills) and so on, all the things he likes to do which would be impossible without a car as he is too difficult to manage on public transport and/or cannot cope with it due to all the people, noise, waiting, general chaos etc.

He would come under the SMI part of mobility- this does not mean you are not entitled to it.
Truse me, Bev, i worked for Mencap, on benefits. My role was to facilitate people in their attempts to get DLA./Mob allw/carers etc.
many of my clients had been turned down but this was often due to the way they filled the forms in, and after I got my sticky beak in they all got accepted!
it is do-able,just keep appealing and don't let them get away with it.
Good luck mate.

By crystalriver

Re: Turned down again for Mobility component.
Sat 16 Aug 2008 09:14

Hi Kerry.
Thanks for your reply, Dont know yet about the fragile x, had a letter from the genetics clinic & were told we still had to wait a few months for the appointment! I asked the consultant tuesday why it was taking so long & she said the staff there only worked part time & they were really back logged She said she would get in touch with them again. She did say Ethan has a certain look about him something about his forehead & the softnes around his eyes & upper cheeks. whatever that means, i cant see it. but several of the Dr's at the hospital said something about phenotype?
I am going to get the welfare rights to help me with the letter, i said to the woman on the phone i just wrote it as it is being straight forward & honest, obviously i was wrong
Will let you know how it goes. Thanks
Bev

By loopy

Re: Turned down again for Mobility component.
Sat 16 Aug 2008 09:23

my daughter comes under the severely mentally impaired bit too. They said that she was entitled to mobility because she is so mentally impaired and needs someone with her constantly. This is true, she does and she is also classed as a danger to herself. She is now 17 and nothing has changed. Your grandson is only 4 and i would imagine that he has the same problems as charlotte!! He is a mentally imapired 4 year old !! what on earth are they thinking not awarding you the mobility part?!

By kerry.

Re: Turned down again for Mobility component.
Sat 16 Aug 2008 11:55

Hi Bev,
thanks for getting back to me.
When they talk about phenotype they mean whether a person fits a certain criteria with looks, e.g high palate, perhaps large'ish fleshy ears, longer forehead.
Sometimes (as in the case with only one of my boys) they have a line on their hand and/or foot.
To explain this, look at Ethans hands....
the line under your little finger on your palm, and then you have another line under the index finger on your palm....
with fxs sometimes these are not seperate lines- it is one line that goes straight across the palm.
On the foot, it is a line that runs down towards the heel between the big toe and second toe.
my youngest has one line on one hand and one line like this on one foot. My other boy doesnt have either so its not hard and fast.
Also if he lets you, look in his mouth at the roof... is his palate higher than normal?
often the physical signs such as the longer forehead may not become obvious until they are older, as is the case with both my boys- when they were little they just seemed to have larger than normal ears but normal faces. Now tey are older, you can see the difference.
Also boys tend to chew or suck certain parts of their hands, base of index finger.
My eldest chews his thumb to the point it is very painful and scabby, and he chews his index finger so it is calloused.
Sometimes they have a squint (but common inmany children). They are clumsy as their vision is impaired in that they dont have very good 3 D vision.

These are all physical symptoms- or phenotypes if you like.
If you go on the Fragile x websites it will explain it better than I can without visual aids lol.

By kerry.

Re: Turned down again for Mobility component.
Sat 16 Aug 2008 12:00

PS what clinic are you being sent to? It might be worth trying to get an appt at guys and st thomas's in London if you are close enough. Also Alder Hey do them as far as I know. Im sure there are other hospitals that do them too.
You shouldnt have to wait this long just fo an appt for goodness sake. this is vital imformation you need, either to deal with it or rule it out.
The youngera child is diagnosed with FXS the better for them and all concerned, especially regarding their education.
Luckilymy boys were just turned two and 14 months, it really does help theearlier it gets diagnosed.

By crystalriver

Re: Turned down again for Mobility component.
Tue 19 Aug 2008 12:32

Hi Kerry,
We are in Exeter so we come under the Royal Devon & Exeter Hospital, (South West) The hospital did say Ethan's forehead is noticeable he also has flat feet. I had a look at his hands but to be honest i dont really know what i'm looking for
He does bite his hands & arms a lot, in fact where he bites his arm i think its stimulated the hair growth his arm is really hairy where he bites on it all the time. I said to my husband get him to bite the top of your head it may make the hair grow again on your baldy spot
Beverley

By welfare

Re: Turned down again for Mobility component.
Tue 19 Aug 2008 16:31

To get the Higher Rate Mobility for Autism you have to be able to show that Ethan is "virtually unable to walk". If asking for the decision to be reviewed, I would advise as follows - Due to the Autism, Ethan could be virtually unable to make progress out of doors. The Autism causes him to fall to the ground (or sit) and refuse to walk. The refusal to walk is part of the PHYSICAL medical condition of Autism. Ethan's behaviour is challenging and difficult to control. Ethan's temper tantrums are severe and prolonged and he cannot be soothed. Because of Ethan's Autism he does not understand his world and he cannot be coaxed or bribed to walk. His tempers can occur at any time, no warning triggers, he lashes out and he must be lifted to a place of safety (often requiring two adults) or taken home. Because refusal to walk is frequent and unpredictable, I believe Ethan meets the criteria under the regulations.
If you are submitting another application due to time constraints for an appeal - you should advise that when they ask how many days a week does he have the walking difficulties you would put "7" as it can happen at anytime and anywhere; How far he can walk would be "NIL" and how long he would take would also be "NIL" and the reason being "he refuses to walk".
Hope this helps