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DLA Renewal

10 replies

MetalMummy · 22/04/2010 21:29

Hi, I have just had the DLA renewal forms for DS2 (6yrs) and I'm not sure what to do about the bits where it asks for information on contacting a health professional who knows about him.
DS has Dyspraxia and Hypermobility Syndrome and we currently get middle rate for him, the problem is when he was diagnosed the consultant gave us the diagnosis, referred DS to OT and then discharged him all on the same day because he said that there was nothing else he could do for DS.
He was then assessed by OT, who then when into school to put some things in place (pencil grips, slope etc) and then they referred him to a physiotherapist because he has no core body strength and then they also discharged him because they said they had put in place the help he needed.
He saw the physio for about 12mths (saw her every 12 weeks or so) was given exercises to do daily at home with DS, referred to the podiatrist and then she discharged him saying that he had improved but was still very weak in his body, but that she felt that he was getting bored with the exercises and wouldn't benefit from them if we carried on , but he would probably need more physio as he got older.
He sees the podiatrist twice a year for inserts in his shoes to keep his feet in the right position but has been discharged by everyone else even though he nothing has really changed. We feel like we have just been left to get on with it and now other issues are cropping up to. He seems very young for his age, he has devoloped a major aversion to loud noises and covers his ears and freaks out if there is music on in the car. He doesn't play with toys, but will sit at the computer watching videos of people playing Super Mario on You Tube (he is obsessed with Mario).
Sorry, this is getting long!!!! I've just realized I have 2 issues here. 1) what do I do about the DLA forms? and 2) who do I need to talk to about DS and the fact that it seems he's getting no help?

OP posts:
MetalMummy · 22/04/2010 22:33

bump

OP posts:
doubleexpresso · 22/04/2010 22:56

Write a covering letter stating the above (more or less) They do say you don't have to have a diagnosis to get DLA so you may well be OK. Lots of people must be in very similar positions.
Contact GP and ask for referral to paediatrician for general developmental check up. This route tends to be a lot quicker than going through school, although you could also ask the SENCO for an appointment.

bigcar · 23/04/2010 08:05

If you are talking about part 25 you can put a teacher down that would be happy to be contacted, so long as you're happy with that. I don't think it has to be a health professional. If it's part 33 and he's seen any of those people in the last 12 months put them down even if he's been discharged. Part 36 can be filled by anyone who knows your child, doesn't have to be health. Sorry if you already know that. Get back to the gp with your concerns and ask for another referal.

MetalMummy · 23/04/2010 20:12

I have a friend who will fill in part 36 for me, not sure about the other parts though. Last time I put OT down but he hasn't seen them since June 2008, it is OT who would deal with most of his issues, physio and the podiatrist are more single things IYSWIM. I think I'll ring OT on Monday and see what they say, possibly make an appointment with the GP about a rereferral to the peadiatrician too. Thanks for the help

OP posts:
DeepThoughts · 23/04/2010 23:04

my 6 yr old ds does exactly the same thing as much as we allow him (mario on you tube)he is obsessed too.

we are also trying to get dla as he has Dyspraxia and asd. I thought i was reading my own post at first

We feel lost as we were turned down for dla (he has high care needs as he is also very sound sensitive and has poor communication skills and severe anxiety. we have had to request a reconsideration. The school he is at provide very little support and he is crying 3-5 times a day, but they reckon he is coping fine.

my ds sees OT,child psychiatrist, paediatrician, dietitian, physio (only twice) and has speech therapy through css. yet all medical professionals seem to ever do is observe and then write reports.
no actual proper advice/support.

sorry no advice, just thought i would join you here.

roundthebend4 · 24/04/2010 06:32

Yep similar problems here we moved and ds not been picked up by any of the services yet but just had to do dla renewal

Did wonder if sending picture of ds in his wheelchair might answer the moblity side

MetalMummy · 24/04/2010 16:50

roundthebend: did they accept the renewal like that?

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roundthebend4 · 24/04/2010 18:08

Not heard yet have had their standard reply to say they have recieved forms his dla is due on his 5 th birthday in July

am hoping they just look at firms and see no improvement from last application if anything the gap between him and peers has grown

MetalMummy · 24/04/2010 21:24

I feel the same, the only thing that has improved is his speech. Everything else is pretty much the same, he now seems so much younger than his peers though and a few times some of the other boys have said they don't want to play with him because he's a baby

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roundthebend4 · 25/04/2010 07:04

Luckily ds I'd not bothered that they won't play with him though he is quick to sign he is not one on a bus he will point towards the buggy and say not him then the wheelchair and sign me.

Yes think that's one of the harders bits watching the others sprint of lotd of his peers now Reading and writing ds can't make sounds and can barley hold a peno

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