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feel dd is no longer eligible for DLA - how do I cancel it.

6 replies

tink123 · 10/06/2008 10:57

DD (5yrs) has been investigated for autism for past 3 yrs, now she is much better and does not need 1-1 at school and ped has discharged her this week. The only thing she still has is private OT, but this is to tie up loose ends rather than full on therapy.

We have got DLA since last April. It was actually previous ped's report that clinched it for us. She was totally different girl last year. It runs out in Nov and I am not reapplying. In addition I want to inform the DLA that she has improved. The questions I have are:
Can I just cancel it? Will they ask me to reapply with new info?

any advice appreciated.

OP posts:
SparklyGothKat · 10/06/2008 11:18

you can just wait till it runs out in nov, and just not reapply or you can phone them now 0845 7123456

KarenThirl · 10/06/2008 11:18

I wouldn't rush into cancelling just yet. Your daughter is only five and although she sounds as though she's made good progress it doesn't cancel out the fact that she has several years ahead of her. School could still be challenging for her as she gets older.

What's she like outside of school? Does she have behavioural/social/emotional difficulties? Can you be totally sure that she doesn't need more support than another child of the same age?

For the record, my son with AS has never had ANY support in class because he thrives on structure - his issues have always been during unstructured periods so classroom support hasn't been necessary. But he still gets DLA and I'll continue to claim because he definitely needs more support and attention than the average 9 year old. His dx of autism will never go away and he'll be constantly learning strategies for getting around problems, all his life.

I'm really pleased your daughter has made good progress, but (and I really don't want to upset you by saying this) it doesn't mean it's permanent. I'd give it more time before you decide about cancelling DLA.

tink123 · 10/06/2008 11:24

But theoretically you have to tell them if situation has improved, so i was going to write and tell them that things have changed. I assume they then send you a form to tell them about changes. By the time they work out she is not entitled, it will probably be November anyway.

I read so many posts on here from ppl that need DLA more than dd and feel guilty.

She does have odd meltdowns outside school but no where near as many as she used to. I know sensory issues may come back but I feel i have to inform DLA of what is happening now.

OP posts:
bullet123 · 10/06/2008 12:02

If you are adamant that she no longer qualifies then a quick letter when her renewal comes up will probably do it.
But please think very carefully. When I was very small I rarely spoke to anyone other than my mum and then I rarely initiated. Mum would go with me to playgroup and until the age of 5 I would ignore all the toys and other children and just run round and round the hall and then try and escape out of one of the doors. My mum was known as "poor Mrs X" as I was such hard work. I would throw violent tantrums. I was, thinking about it, harder work than my Ds1, who is further on the spectrum than I am. I started school and would chew on other children's pen tops (they held a meeting and banned me from borrowing them again ).
And then I got to six and from that age until 10 I improved a fair bit. I could play tag in the playground and be invited to tea. I could attend Brownies and join in with the PowWows and the activities. I could sit in lessons.
And yet, despite these improvements, there were still differences and difficulties which were picked up by others. My handflapping for example, or the fact that if an adult asked me a question I would answer them by speaking to my mum. Or my constant daydreaming, my inability to pick up on even basic things, the fact that I still rarely initiated things or asked for help or for things I wanted. My passive nature hid a lot of things, but not enough to prevent the head master of the school picking up on the fact I was different.
The thing is, is that during this time, between the ages of 6 to 10 I think that my immaturities did not matter to others, or were as apparent to others. Females who are Aspergers often present as immature, rather than the classic male stereotype of being more direct and inappropriate with their talking. Now, if you have a six year old who likes playing tag and you have a ten year old playing tag, neither one will be held to be unusual. However, if when that girl reaches the age of 11 or so and the other girls start sitting around gossiping rather than playing games, then the gap between a girl who has AS and girls who are not on the spectrum becomes clearer. Tony Attwood wrote a very enlightened piece about girls with AS, yet he failed completely to understand that, far from, as he put it, other girls being "maternal" and "caring" to AS girls, they can, in fact, be vicious little bitches. I finally, in the VI form, found myself again able to interact during breaktimes when I started playing football with a few lads. Had I had been able to do this at secondary school, rather than being trapped between realising I was supposedly too mature to play games and yet was too unable to interact socially with others, I would have had a far easier time of things during those breaktimes. The main thing I remember from my school days was that I changed very little i nterms of social an emotional aspects, from the age of about 6 to about 14, getting a vague interest in boys being about it. What caused difficulties for me was that other children did change and so the gap between me and them widened. So basically, what I'm trying to say, is go through your dd's diagnosis with a fine toothcomb.

Romy7 · 10/06/2008 12:23

I'd ring them and ask to be reassessed as there have been changes - I suspect if you tell them she has improved they may send you the paperwork, or they may just tell you that it would cost too much to do the admin now, so let it lapse in Nov - they're a funny bunch....

if you couch it in 'reassessment' terms, they can make their own minds up as to your entitlement once they have read your forms... that way they are making the judgement and not you - sometimes as 'mummy', we aren't as objective as we need to be in 'entitled' terms...

(I'm the one that thought there had been some mistake when she got the award letter and contacted the SN HV to ask if the award was right... cue rolling eyes)

Why would they give me that much money for a baby?! Ah....

tink123 · 10/06/2008 16:52

well, i have sent a letter informing them that ped has discharged her but that she remains on school action plus and under care of special needs team, plus has private OT.

I feel more relaxed having told them. Now it is up to them to decide if she is still entitled to it.

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