Autism and higher mobility?

[lorrie36]

Hi there,
after reading these posts you relalise you have an easier life than some,even if yours is hard!, i am wondering is it worth a fight to claim higher rate mobility
Anyway i just had a call from benefits,i was just wondering what any of you think.
My son can walk,is autistic,yes diagnosed,can talk,but only small sentences,otherwise you will lose him.He has a very short term memory and also severe learning difficulties,his understanding of anything is more of a younger child,all these and more and he is about 5ft3 !
Sorry i dygress!,anyway,the next stage is tribunal stage,i have to turn up and take people with me?
I understand it is hidden disability,i understand there are children with more serious illnesses,and i don't mean to sound whiney,but i am doing all i can for his future,as no one else will.
What are your thoughts or experinces?
Thanks for any input you have

[dkra2007]

Only you can answer that. Speaking from experience it is very tiring battling for support/assistance.Over the past 13 years I have found you have to shout loud to get heard and stick to your guns to get what you want for your child. I understand the mobility portion of DLA is for severe mobility issues. My DS was awarded it when he could walk, albeit short distances (sadly he does not walk at all anymore). Ithink they look at the safety aspect too..is he aware of danger etc

I always think nothing ventured, nothing gained - what have oyu got to lose in trying, they can only say 'no'

[pudge]

When my DS was first diagnosed with Fragile X we got the DLA componenet with not too much hassle, after his consultant wrote to the DLA and explained that this was a genetic condition and Ross would never get any better if any would get worse as would need more care and attention than that of his peer group, we decided when ross reached the age of 5 it was becoming increasingly difficult for me to use public transport with him, he hates noise and crowded spaces, the final straw came when i was asked to get off the bus because ross has jerky hand movements and found pinging the bell was amazing, so he kept doing it even tho i tried to stop him, so the bus driver asked us to get off! Ross at that time was also an asthmatic (has fingers crossed grown out of it!) and if the weather was really bad (which it can be in aberdeen!) he would not put one foot infront of the other, so my HV advised me to apply for mobility, we did but were only awarded the lower rate as Ross can walk and that was the reason they gave me, even tho his understanding is very poor and he is now 13 but because of his learning disability only works at the age of a 5-6 year old. With the lower rate i was able to buy myself a little KA. So i would not pin your hopes on getting the higher rate as my son also has no understanding of safety issues/road awareness - but good luck anyway

[lorrie36]

thanks for that,as i have said in another post,everything is a battle,my sons learning age is also at age 5,i have fought to get him help,diagnosis,statemented,direct payment,nothing has been easy,but i am strong willed and can do it,just want to give him the best help i can.I want to know as he gets older he has everything he should be entitled to,in teh reasons,it states in pain when walking,anyone with an autistic child knows they find alsorts of things painful.The difference is for my son its mentally painful.Just because he doesn't get pain in his legs,does not mean he is in pain.I am sure you will all agree,for anyone whos child has had a meltdown,they are very difficult for your child to deal with,mix that into outside and about well sometimes it is just very worrying.That comes from my son who is now at least 5ft 3 and built like a BSH,without swearing lol

[paw]

Hi, I watched Dom Littlewood's programme this morning - Saints and Scroungers - it covered autism and mentioned an organisation that helped you to fill out the forms to ensure that you got everything you were entilted to.

The person said that parents often don't put in the details that get them the funding as they feel they are not relevant. Sorry I didn't get the organisations name but it's on iplayer at the moment - Saints and Scroungers: "The mother who battled back from a financial crisis and the news of her son's autism" Their son can walk but they were given enough in grants etc for her husband to go part-time in order to help her.

Different I know, but we got full AA back for my MIL after bringing in someone to fill in the forms for us, they put in lots of things that we hadn't even thought of. Hope this can help you.

[WickedPlans]

High rate mobility can be a hard battle but I know many who have won it. (mine get low rate)
You have to focus on how long it takes you to walk a short distance and the risk involved in doing so. His lack of safety awareness, his likelehood to do something dangerous. Routines that put him at risk (mine used to walk along all the lines in car parks!)
If you think that he meets the criteria, then you should apply.
I'm going to send you a link that might help you.

pudg, what that bus driver did was illegal and you should have complained to the bus company.

[New2Florida]

I also watched the Saints and Scroungers program this morning and the organisation that paw mentioned above is Contact a Family. They do have a website which explains in more detail what they are about but in simple terms, they are families with disabled children who help other families with disabled children.
Let us know what you decide to do and how you get on.

[Hollytigs]

This is an interesting thread! My daughter is not Autistic but she has an undiagnosed brain disorder which results in a number of problems. She is nearly 7, registered partially sighted and has some mobility issues. She can walk but not run, skip, jump or climb steps without a rail (she wouldn't be able to step up a high kerb for example). When she was 5 they took away her mobility allowance completely because she was now walking. She gets pains in her legs and joints sometimes after a lot of walking, and has a limit of about one hour of walking. It seems to me that we ought to be allowed the low rate? Should I reapply?

[Guest]

If you think your DS meets the criteria then fight it all the way.

For the higher rate mobility component of DLA the criteria are very well defined. You must be 'unable or virtually unable to walk' or show that 'the exertion required to walk would constitute a danger to your life or would be likely to lead to a serious deterioration in your health' or 'you are entitled to the higher rate care component and are severely mentally impaired with extremely disruptive behavioural problems'.

If your DS gets the higher rate care component you may also have a case for the mobility component using the last statement above. The more evidence you can cite the better as you know your DS better than the adjudicators will.

Don't be afraid to challenge the decision, they are not always right. Our DS has spastic quadriplegia and cannot use his hands yet they told us he could cook his own meals Good luck!

[Guest]

This is really a sore point for me!

Our ds is autistic, he has dyspraxia, moderate aortic heart disease, low muscle tone, and wears splints for pronated feet/shortened tendons. He gets out of breath due to his heart disease, but because he can walk, he was refused mobility.
I have to do physio with him everyday because he can't walk properly and he is going to have to wear orthotics all day but yet he was refused.

Also, we were refused a blue badge.

It annoys me so much because he has to have surgery for to help him to walk better.