Rant about DLA and statementing

Hi Sarah

You say you have applied three times for DLA;  have you ever appealed their decision?   I generally find that they always refuse your initial application.  I really suspect that this is just to see if they can get away with not paying it and I suppose there are a lot of people out there who will just accept this initial decision.   I applied for DLA before Tom was officially diagnosed (advised by Child Psychologist to do it) and was refused initially but appealed and was awarded low rate care and low rate mobility.  When it came to renewal time three years later I filled in the forms they sent me and they refused again!!!  Which I found absolutely unbelievable, I mean its not as if autism is going to suddenly disappear.  Anyway I appealed  and was awarded middle rate care and low rate mobility which is what he is on just now.  I also get carer's allowance.

I also now go to a local Law and Money Advice Centre (it's just like a Citizens Advice Bureau) and they fill in the forms.  It seems that people who offer this service of filling in DLA forms for you seem to know exactly how to word things and what works for the authorities to award DLA. 

I think what you have to watch is that schools sometimes downplay the difficulties of our children.  This was the reason both of my initial applications were refused, because Tom's school claimed that they had no problems with him, which was true as far as his behaviour was concerned but not the amount of assistance he needed and his communication and perception difficulties or his poor social skills.

Like yourself I also had the sleep deprivation difficulties, along with dietary, toileting, anger issues and destructive behaviour at home (which of course the school wasnt seeing although they did know about it, but the section they were asked to fill in did not contain questions pertaining to this).

It might be worth discussing these destructive behaviours with your GP and having them recorded in his medical notes so that the GP can support your claim, also any therapists that you see.  

Are you still within the time limit to appeal your last refusing of DLA?   If you are appeal against this decision, tell them everything you have told us above and anything you have missed out ... dont hold back on anything.  Use the worst scenario that you have had ... I know these how many times a day and for how many minutes are just ludicrous but give them your worst day.   Ask all the therapists and professionals who have contact with you to provide you with support letters and enclose them with your appeal.

Josie - Community Champion

I think the NAS has some information on their website about how to fill in the forms for DLA. Also, your Parent Partnership should be able to help.

Asteroids Sara - Community Champion

Hi Sarah

I recently completed the DLA form for the first time for my 4 and a half year old son & received the middle rate care component.  Some of the advice I was given was to always write what happens on the worst days, also keep making the point that the care needed is more than would be needed to a child of your sons age without ASD & on the stupid questions that asks 'how many times per day' etc put things like variable, unpredictable etc.  If you have any specific questions about questions your not sure how to answer then please feel free to ask away. 

Tracy - Community Champion

Have you got a autism practioner? my son was awarded lower rate to start of with but i knew because of his lack of sleep that he should get higher rate and i know exactly what you mean about things getting broken, get a letter from a doctor or someone who works with your child

hope you get on ok x