I have recently received the award notice from the DLA (mobility componant) for my son who has ASD they have awarded him the lower rate on the basis that i have mentioned in the application form that at times he runs away from me. In the same form i said that often he refuses to walk due to a reaction to something he doesn't like.

I appreciate how this may sound to be contradictory to someone who doesn't know a lot about autism but that's how it is. Some advice from the NAS suggested making a point in the form about autism being an organic brain dysfunction simply because the person who assesses the form and awards the dla may not have a clue about autism.

Can any one advise if they are in receipt of high rate mobility for a child with autism?

He already received high rate care componant

Also we were refused the blue badge so any advice on that also would be helpful.

If we're not entitled to it then that's fine but i would hate to think we were refused these things as someone simply didn't 'get' what autism could mean to a child/adult suffering.

Thanks in advance

Amanda

If your son is below a certain age then he can't be awarded higher rate mobility. Call the DWP and ask what basis they awarded lower mobility and what basis someone in your sons position would be awarded higher mobility. To be honest though I think that if your child can physically walk then they'll drag their heels about awarding higher rate which is shocking but that's the DWP for you.

Hi

thanks for that my son is now six.

I understand what they're saying about the walking issue (which is the reason he got low rate) but at the end of the day his disability means that some times he is 'unable' to walk due to ecternal stimulae, i think it's ridiculous that these people can make these kinds of decision when they kow nothing about my son or autism for that matter - i even went to the extent of explaining briefly what autism was in the form!

Thanks

Amanda

can you get your consultant (or other) to write a letter explaining, have a dig around the web also, the last time I looked on the dwp guidance on disability sections they were saying the parent was the last person to ask about the problems!?!

DWP - Technical guidance - HB5 - Disability Living Allowance (DLA) - The mobility component

this any use.

Same here, only got lower rate for mobility for my AS son, and you can only get the Blue Badge if you get higher mobility rate, so you wouldn't get that. Ridiculous that there is no leeway, but there you go.

I don't know of anyone who has managed to get higher mobility rate on autistic kids, unless they have another problem directly linked to mobility issues. Apparently, stopping in the middle of the street to stare at leaves for 15 mns, or meltdowns, running away etc... doesn't count for anything...

on the basis that i have mentioned in the application form that at times he runs away from me. In the same form i said that often he refuses to walk due to a reaction to something he doesn't like.

Yes it does sound contradictory to someone who has zero understanding of ASD and the unpredictability of the disorder but it’s factual, depending on the sensory assault or the surroundings they find themselves in at any given moment.

I am passionate about getting what is right for people with autism and more help with mobility is paramount.

I would advise that you appeal mentioning the featuring sensory assault that a sufferer has to endure on a daily basis which leads to very unpredictable behaviour/actions and give the reasons why mobility is important.

Here is part of a short article I wrote some time ago, hopefully you’ll be able to put your own connotations on some of it that is relevant to you.

Autism ~ the misery of sensory assault.

Our senses play an important role in our day to day lives sights, smells, touch and sounds can evoke pleasurable memories.

Of course we take our senses for granted, they are just there, a part of us and we seldom think of them.

The sound of a lawn mower and the smell of freshly cut grass possibly evokes last years memories of Spring, you feel a tingle of excitement that Summer isn’t too far away.

Imagine if you can, you were unable to correctly process the information brought in by your senses?

You’re Autistic and your thoughts couldn’t be further away from warm sunny days and you are in no means excited about anything, you are feeling physical pain because your senses failed you.

All because you are unable to filter out the sound and you just want to run away from it but you can’t.

That is just one example of something that makes a noise, put everything together, stereo’s, hedge trimmers, cars, horns, barking dogs, lots of children, exhausts, clapping, screaming, supermarket announcements, crowds mechanical/interactive toys and all the sounds in our daily lives that we find perfectly acceptable is a war zone for people with autism who are often hyper sensitive.

Sadly there is no asylum and with very little awareness of this condition the misery is intense and extremely painful.

However, a word of caution. An appeal looks at the *whole* of the claim, and could result in the care element being reduced, so you need to think about that too before deciding to go ahead.

Hi Missal

you should be able to get a blue badge via your doctor i have Ankolosing Spondolitus i get mobility side of DLA but not DLA for care ( i Have been turned down 8 times since 2000 ) my doctor arranged a letter to hand in with my application for a blue badge.I also got him to register me disabled with the social services etc( seems a bit silly considering i had to use 2 crutches just to walk 10 feet into the local council office to get an application) any way good luck hope this is a help

regards

tc

Sorry, topCatDC, but that's not quite correct. You would have got your BB because of the physical aspect of your disability, eg the difficulty in walking.

The BB parameters are government set (as recently seen with the new changes for under 2 yo), and they are as follows:

You are automatically eligible to apply for a badge if you are over two years old and either:

• receive the Higher Rate of the Mobility Component of the Disability Living Allowance
  
• are registered blind
  
• receive a War Pensioner's Mobility Supplement

You may also be eligible for a badge if you are over two years old and either:

• have a permanent and sustainable disability which means you cannot walk, or which makes walking very difficult
  
• drive a motor vehicle regularly, have a severe disability in both arms, and are unable to operate all or some types of parking meter (or would find it very difficult to operate them)

If you are a parent of a child who is less than two years old, you may apply for a badge for your child if they have a specific medical condition which means that they either:

• must always be accompanied by bulky medical equipment which cannot be carried around without great difficulty
  
• need to be kept near a vehicle at all times, so that they can, if necessary, be treated in the vehicle, or quickly driven to a place where they can be treated, such as a hospital.

Despite the fact that autistic kids often present massive problems in getting them to move once they've gone into themselves, this is not treated as coming under any of the above criteria. It may be that certain councils are more flexible and therefore that OP may be able to get a BB that way, it's certainly worth a shot, but it will very much come down to the council where she lives. In mine (Croydon), it's not even worth trying, rules are rules are rules.

The smaller councils can be more flexible, you can check on your own city councils web site, it might say "people in reciept of disabled living allowance higher rate or those who have a long term mobility problem". Even if your council does give these out don't get your hopes up too high as they are decidedly ageist and if they see that your child can walk and run unaided then it is quite likely they will decline as they only have so many permits to give out. I know this is a huge injustice to AS parents (my niece has AS and ADHD) but the councils are more likely to give their blue badges to elderly people with mobility difficulties.

Hi bookworm

its topcat i got my BB 2 years ago( have had one since 2000) as you say the authority's may have changed the criteria now hope i haven't miss lead any one .regards TC

Im not too sure about the blue badge as i believe they base it more on the ability of getting around physically. I have recently apllied for mobility allowance for my 2 year old son (3 in november) and have been awarded high rate mobility, i think the best thing if possible is to try and apply again, you need to think of the problems you face on a worst possible day whilst going out and write a life story to the dwp. When i applied i think i wrote a whole book as then they cannot deny you on any lack of information. I know people who have been turned down numerous times and then attended a tribunal and then had it awarded but as a previous post mentioned they look at everthing and you risk having previous awards revoked. Good luck

my boy who has asd is nearly 10 and is very big built, when he has one of his moments while out and about it can take forever to calm him down, or catch him. i put all this in my dla application and got lower rate mobility and middle rate care. it is disgusting that the they are not assesssed individually.

You are able to qualify for DLA for help with getting around at the higher rate on the basis of a mental health problem if:

1. You receive highest care component

2. You have severe behavioural problems

3. You have 'arrested development' of the brain

What does 'arrested development' mean - it means that you have a psychiatric or organic disorder affecting the brain that causes significant functional limitation and developed before the age of 35.

Your should be able to get DLA for help with getting around at the higher rate for your son on this basis.

Not all autistic children have behavioural problems and not all of them have arrested brain development as defined in the judgment here: Decisions of the Commissioner

Not all autistic children have behavioural problems and not all of them have arrested brain development as defined in the judgment you posted.

Was this directed to my post?

yes sorry, i ammended while your post crossed. losing the plot slowly but surely.

no asthma at all????

honey x

Jen

You seem to have the impression I was generalising - I wasn't saying all autistic people would be entitled, simply that I think the OP's child would be. (Sorry if I've got the wrong impression here)

The basis for my coming to this opinion was that, bearing in mind the criterion for an award being made on the basis of arrested development, the OP's child is six years old. An aware of highest care component at this age would unlikely be on the basis for a need with bodily functions such as bathing, dressing, using the toliet, since you would not expect a six year old to do these things unaided. The award would be made on the basis of a need for supervision, and most probably for help and encouragement for age-appropriate play. Supervision would likely be established because of a childs inability to recognise obvious dangers, and age appropriate play established because of the social difficulties that autistic people suffer.

The OP demonstrated behvioural problems - adverse reactions to external stimuli, and running away often. The latter I can accept is not all that unusual or a six year old, but combined with the difficulties in recognising danger would be a significant behavioural risk factor - for example if the child was approached by a stranger and did not withdraw.

I think that these conditions would likely establish entitlement. Now I've explained myself (I should have done this earlier, but anything to try and sneak to bed a little early ) do you still think I might be a bit far of the mark?

i have a very well "rehersed" 11 yr old that is autistic, has adhd, ocd and all the rest of the trimmings, he cant go out of the front door without first being "checked" (its not unsual to have several layers of clothing on, or two left shoes or odd shoes lol" ) he cant bath himself as tries to stay "underwater"he does have chronic lung disease too and chronic asthma so therefore his inabilities if you like make him elidgable

never the less we love him all the same (when he takes his tablets and doesnt feed them to the hamster )

honey x

I think that these conditions would likely establish entitlement. Now I've explained myself (I should have done this earlier, but anything to try and sneak to bed a little early ) do you still think I might be a bit far of the mark?

Sadly, yes. Not because your logic is wrong, it's spot on and all of us parents with the same issue would agree with you, but because regardless of the reality of it, DLA higher mobility rate will not get awarded in the above scenario. Unless there is another physical impairment, children on the spectrum invariably only get the lower mobility rate.

I'd advise the OP on this one to seek out a Welfare Benefits specialist in the real world - morally (and, imho, legally) your son ought to have entitlement. If the DWP are being unreasonably stubborn (not that its something they've ever been known to do ofc ) then it needs taking further. it winds me up so much sometimes that the Department can be so skinflinting when it comes to trying to scrimp on payments of DLA to the needy - I wonder how they would respond if people withdrew their support on the basis of a non-award and thence their needs (and entitlement) increased...

( Incidentally Bookie, do you have the email address for submitting docs in to CAG? I tried PM'ing but computer said no )

Have added you to my buddy list now, Davjoh, try PMing again. ;-)

I do agree but we are assuming that there are further problems with the OPs child. If there aren't (and none are mentioned) then going to a tribunal may be counter productive as, like bookworm mentioned earlier, the entire award is looked at and the care component may be reduced - it does happen.

Hi, just reading your interesting discussion here, I am currently 29 and have both Asperger's and ADHD. I too do not get high motability, only low, and no blue badge. Firstly there is one problem that the DLA seem overlook with me, I can only drive an automatic car as I by trying to drive a manual car with my ADHD causes me to loose concentration on other things (such as the road), and even if I could concentrate for long enough my hand-eye co-ordination causes me problems too. My car is my lifeline, without it I wouldn't be able to go out, before I passed my driving test I used to go on buses and coaches everywhere, I also have siderodromaphobia (fear of trains) so I'm very restricted to what I can travel on. When I get on a bus or coach though I always get very worked up, so worked up that I end up having to call someone to re-assure me, also sometimes on public transport I've been insulted by drivers (especially Warrington Borough Transport), who don't seem to understand the problems faced by someone with ADHD when they get upset and instead ban you from travelling so you end up having to walk home. My car though has to be modified specially so I can drive it (ok an automatic gearbox isn't really a major modification, but it still costs more than a normal car). On top of that with the hand-eye co-ordination issue I struggle to park the car in some places (mainly because I can't always get the car into the narrow parking spaces), also at times I struggle to understand signs and when I come back and find I've got a parking ticket for reading the sign wrong and then have the ticket warden sat there laughing at me that also sets my ADHD off and I end up giving the idiot a mouthful about how I'm disabled, and yet can't get a blue badge because it's not physical but mental. One thing I am really lucky with is the fact I've got a mum with arthiritis who can't drive so she lets me get a car on her motability and let's me use it as my main lifeline, she also has a blue badge however I'd rather continue to collect parking tickets than use her blue badge illegally. The most annoying thing about all of this is the fact that at school I was told I had ADHD but that I'd grow out of it, this information was not passed on to college or Uni (because apparently I'd grown out of it), I failed my degree, then after gaining a HND I finally found out that I have Asperger's and ADHD does continue after childhood. So now I'm 29 working in a really low paid job all because I never received the support I needed to complete my degree (oh and also the other problem I've got is now I'm aware of still having ADHD, I've run up massive credit card bills through impulsive spending during the time when I wasn't aware of ADHD), well thanks alot NHS for messing my life up. Maybe I should sue them! And also the NHS are still messing around as they can't give me medication (Ritalin) for the ADHD until they've fully re-assessed me for it (should be in about 3 weeks, yeah I heard that one before when I found out about Asperger's and I was still waiting 2 years later!). My other problem with driving is the amount of distractions there are on the road for people with ADHD, some areas where I live are getting very dangerous for me to attempt to drive around because there are signs, chicanes, speed bumps and even plants (YES I actually have found a street near where I live that has put plants apparently as a traffic calming measure???) in the middle of the road for me to drive round, obviously the person who puts all these in place doesn't bother for one second to stop to think about people who's attention might be taken away by all these distractions!