Here are some suggested organisations that offer expert advice on SN.
BEEN REFUSED MOBILTY DLA FOR ASD DD(4 Posts)
HELLO EVERYONE! NEW ON HERE BUT HAVE A QUESTION I WOULD LIKE TO ASK - MY DD IS 5 AND HAS ASD - I GOT MY DLA FORM BACK SAYING THEY WERE GOING TO GIVE MIDDLE RATE CARE COMPONENT BUT NO MOBILTY COMPONENT - IF I APPEAL THEY MIGHT REDUCE THE CARE COMPONENT DOWN TO LOW RATE WHICH I AM WORRIED ABOUT - I FILLED OUT THE DLA FORM SAYING SHE NEEDS SUPERVISION OUTSIDE AND HAS NO SENSE OF DANGER OR DIRECTION - SHE USUALLY SKIPS OUTSIDE A LOT TOO - SHE HAS SPEECH AND LANGUAGE DIFFICULTIES SO I HAVE TO CONSISTENTLY TELL HER TO WALK WITH ME OR STOP. THEY KEEP TELLING ME THAT SHE IS NO DIFFERENT TO ANY NORMAL 5 YEAR OLD!!! WHAT SHALL I DO!!I WAS NOT EXPECTING TO GET HIGH RATE MOBILTY BUT A LOW RATE - ANY ADVICE GIVEN WILL BE GRATEFULLY RECEIVED
Try telling them that she is a danger to herself and others, roads etc. Explain that she is vulnerable to abuse and bullying from others because she doesn't behave appropriately. Could you get your doctor or health visitor to write to them explaining that her needs are significant and she needs continual one to one support which unlike other 5 year olds is not responsive to being trained to behave a certain way in public. Tell them that she needs physical support to walk appropriately - although she CAN walk she needs carrying. Even if you don't carry her, the form asks for information about the help she needs even if she doesn't get it. I know from my own experience that I have had to carry my own children because they don't behave in typical ways when we are out - at least 4 of mine are SN.
It might also help if you tell that them that she doesn't understand or follow instructions and is distracted by other sensory information. Good luck
It's difficult in this situation. We were denied mobility for DS2, although he has this same issue. He absolutely cannot be let go or be unsupervised even for a moment outside. We were told that was normal and if we pushed it we could lose the MRC he was awarded (even though he qualifies for HRC as we are monitoring, supervising, and caring for him around the clock as he is up frequently during the night). We just couldn't face a huge fight at the time. I have gone back and forth about pushing again for the mobility. He has a Maclaren Major, which the OT department at NHS gave us, so it's not like his mobility needs aren't recognised.
I think that they make you feel like you might lose what little ground you've gained by telling you that you might lose it all if you fight it. It's frustrating, but honestly I'm just not sure I could cope with dealing with it right now. So I know how you feel!
thank you for the advice Godkeepsgiving and Triggles. My gp and consultant are great and would give me a letter - i just presumed i would get LR mobilty component because she has been diagnosed.By getting MRC you get extra tax credits and carers allowance too and i am afraid i would lose them.
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