dla mobility refused - advice please

[pokhara]

Hi, i havent posted for a long time so ill give little background to ds.
ds was 4 a few months back. we have been under paed and speech therapy and portex for past 2 years. ds has severe language delay of 20 months,also severe behaviour problems, extremly hyperactive and has alot of autistic tendencies. isnt able to have speech therapy as too delayed with undersatnding, so s&l have sent programme to ds pre school to do it twice a week for 30 mins each tim, the most they can get his atention for is 5 minutes each time. Ds does not understand danger at all, when we are out his does not walk he runs, jumps, and lays on the floor, we have a major buggy that paed referred us for last year, this is due to him refusing to walk and for his own safety when he cant walk he just runs everywhere as he gets too excited and hyperactive. So when i take him out the buggy coms everywhere with us and he spends most of the tinme in the buggy for his own safety.
No diagnosis yet, but paed said possibly adhd and autistic tendencies, and that he doesnt think autism but that ds is somewhere on the spectrum, and he is looking further into this. DS starts school in sep, he has a place in education inclusion base within ms school, 8 children in the class and speech therapy twice a week.

Lots more to tell but hands aching already. Anyway ds gets high rate care dla for the past year, but in jan i decided to ask for change circumstances as i felt he should receive mobility. they recieved paperwork on feb and we got a decision 2 july, 22 weeks in total!!!!! and they said no change to award, called yesterday and they said reason was because under the VIRTUALLY UNABLE TO WALK part ds sits himself on the floor and he makes a concious decision to do this. I questioned about him running round etc, and explained although he can walk he deosnt, and she said did you put this in the form, i replied yes. I advised her about major buggy and reasons behind [paed giving one to us, she asked did you put that in the form, i replied yes. They have had all this for 22 weeks and obviously not read it properly.

anyway recived appeal for today. I am sure i have read somewhere of testcases where something similar has happened and that a child with this difficulties is not making a concious decicsion.

In the appeal letter i send back i want to include as much as i can from past cases if i am allowed so i can really fight this.

If anyone could please help and offer any advice, i would be absolutely grateful.
thankyou in advance.

This is from Direct Gov website. Look at parts in bold. They really should understand their own rules!

If you have mobility needs
To get the mobility component of Disability Living Allowance, your disability must be severe enough for you to have any of the following walking difficulties, even when wearing or using an aid or equipment you normally use:
? because of a physical disability, you are unable or virtually unable to walk without severe discomfort, or at risk of endangering your life or causing deterioration in your health by making the effort to walk
? you have no feet or legs
? you are assessed to be both 100 per cent disabled because of loss of eyesight and not less than 80 per cent disabled because of deafness and you need someone with you when you are out of doors
? you are severely mentally impaired with severe behavioural problems and qualify for the highest rate of care component
? you need guidance or supervision most of the time from another person when walking out of doors in unfamiliar places
There are two rates of the mobility component depending on how your disability affects you:
Lower rate
If you need guidance or supervision out of doors.
Higher rate
If you have any of the other, more severe, walking difficulties.
You may be entitled to only the care component or only the mobility component, or you may be entitled to both.

If you are claiming for a disabled child
Your child must need a lot more help or supervision than other children of the same age.
You can claim for care needs before a child is aged three months, but benefit will not be paid before the child reaches the age of three months unless they are paid under 'special rules' (see below).
You can claim for mobility needs from:
? age three, if your child is unable, or virtually unable, to walk or would be at risk if they tried to walk
? age three, if your child is both 100 per cent disabled because of loss of eyesight and not less than 80 per cent disabled because of deafness
? age three, if your child is severely mentally impaired with severe behavioural problems and qualifies for the highest rate of care component
? age five, if your child needs guidance or supervision when walking out of doors

Oops, all the bold parts didn't come out! But I'm sure you can see the bits I mean.

I think the problem is that children of 3 + 4 only get mobility if they are deemed severe enough to qualify for HRM (LRM comes at 5). So the substantially more help bit only gets LRM. HRM is applicable for those who cannot walk unaided - at least that is how it is usually interpreted. HOWever IMHO a child who is unable to walk in the desired direction should also be considered for HRM. It can be quite a fight especially without a DX.
My advise would be to get a professional from the disable children team or money unit - accustomed to how to phrase these things to help you word it. I confess to not bothering to appeal ds LRM dispite children in the same school who seem more able getting it)! I was told the wording to use was 'unable to make progress in the desired directio' when we attempt to go out with ds. If you have to use a wheelchair ( to keep ds safe) or a second adult to take ds out I would have thought you should appeal.

The NAS has some sound advice on higher rate mobility for kids with ASD.
here

This is what you have to demonstrate
? *age three, if your child is severely mentally impaired with severe behavioural problems and qualifies for the highest rate of care component

this page clarifies that.

DS sounds exactly like my little boy who was diagnosed with Autism when he was 2, we knew something was different about him from 16 weeks because he wouldnt smile or look at anyone, he was constantly looking around.. I applied for mobility about 10 weeks ago and still havent heard anything back. I was told that they have to be 5 before you can claim for mobility. If you havent applied whilst hes 5 then try again, im sure all they will look at is the age and not when he turns 5, even if he turns 5 when you've applied.

Mummy your Ds sound remarkably similar to DS 1. He is 5 now but we applied for mobility DLa when he turned 3. I put all the threads up at the time. It took over a year for them to reject and then we went to tribunal and it took all of 5 mins for them to make a decision. It was based on the fact that Ds is considered Severely mentally impaired (horrible term) Because of his delays in language and understanding. We also showed that he has behavioural problems -lying on ground and melt downs due to sensory issues. We got DLA awarded at higher rate care and mobility until Ds is 7.

sorry meant to say OP yous DS sounds similar to mine.

Mummy not true about waiting until 5 that is only if they dont qualify for Higher rate care.

Hi my DS is 5. At 3 he received HRC we received the forms, filled them in and he continued to receive HRC. When he was 4 and after reading about it, I realised he should qualify for HRM under the very awful criteria "severe mental impairment with severe behavioural problems and receiving HRC". So filled in the forms again and sent a letter with it explaining why I felt he met these criteria. There is a bit in the Poverty for Action handbook which describes what you need to demonstrate this was brilliant advice. I don't think they had a choice as it was written there in black and white. After 10 weeks got the award HRM. I pushed my luck and questionned why it wasn't backdated to when he turned 3 and 8 weeks later they did. I was gobsmacked. Good luck.

wow i am so intersted reading this.

my son is 4 and gets HRC but no mobility. he was diagnosed with asd aged 3, and they said he had a developmental delay (then he was operating about 9-12 months.)

however i would be worried filling in the forms again in case they took the HRC off him. we were advised by a welfare rights worker that when they reassess the form, they could change their minds about the care part. has this happened to anyone?

and do you have to fill in the whole god almighty form again?

That is the rub, do you go all out for more/higher and risk losing what you've got? I didn't apply for HRM for a couple of years because of that, then the Congestion Zone came in and I girded my loins and got it (DS was about 6).