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Original poster

Really worried about DLA after reading all the threads from people who have been turned down.

25 replies

Marne · 27/01/2011 12:57

I send dd2's forms off a few days ago (no too late to change anything), she receives high rate care and no mobility (until March/her 5th birthday). I'm so worried that we wont get it this time as from what i have read on here they are turning a lot of people down Sad. Dd2 has ASD, wakes in the night (this has improved slightly), she has severe language delay, no sense of danger and often refusses to walk. We were very lucky last time to get higher rate without a fight. I don't think we could servive without dd2's DLA (getting her to school costs me a fortune, the amount of clothes she gets through costs me a fortune).

I am slightly sh*ting myself with worry.

How many of you have been turned down or not been ofered the rate you expected?

OP posts:
vixen1 · 27/01/2011 13:00

I'm afraid it doesn't answer your question but I just wanted to reassure you that I recently got middle rate for my DS. He has no diagnosis as yet and I really wasn't sure if we'd get it. It came through within 4 weeks too. Good luck!

Original poster
Marne · 27/01/2011 13:02

That was fast Vixen, well done, i hope dd2's doesn't take too long. Fingers crossed.

OP posts:
SparkleRainbow · 27/01/2011 13:05

sorry this is my fault, ds was turned down yesterday and I am in a bit of a state about it. Someone did tell me it is not too late to send in extra info, even afer you have posted or submitted the forms,so you can send more if you think you have missed something. My perception may be wrong, but I get the feeling that ASD has gone frombeing completely misunderstood by DLA to being accepted as a recognised disability or need, so although it is always still a fight, you have precedence on your side. My ds has an unusual physical disability, not well understood, so don't think thathelps. Have I amde you feel better or worse, so sorry, didn't mean to bring you down with my stress.

NorthernSky · 27/01/2011 13:18

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Original poster
Marne · 27/01/2011 13:23

Its not your fault sparkle, there seems to have been a lot of people on here turned down in the past week or so with similar problems to dd2. I wasn't getting my hopes up for mobility as i know its tricky to get it for an ASD child but was really hoping that the higher rate would continue.

Its good that you posted about your expereance, it makes people see how hard it is to get what our children deserve. Filling out the forms is stressful enough (no one likes having to describe their childrens difficulties). Good luck Sparkel, i hope you get a good outcome.

OP posts:
tibni · 27/01/2011 13:26

Just got a quick DLA decision back. ds remained on higher for care and mobility until he is 18 with no fight. Ds is nearly 10 with severe ASD / ADHD and comorbids. They quoted the Consultants supporting info as that main reason for the decision.

I included a lot of reports in with his application but still expected a fight (5 years ago I had to appeal to get his rates)

Good luck

coppertop · 27/01/2011 13:30

I sent ds2's renewal off just after Christmas. The reply came a week or 2 ago and he has been awarded HR care and LR mobility. It's only until 2013 (presumably when the changes come in) but you definitely have a chance of getting it.

Good luck. :)

SparkleRainbow · 27/01/2011 13:30

That was very kind Marne and Northernsky, I will cross my fingers for you Marne, and I will try and pull myself together and get those gloves, that come with sn dc, back on. Just need some time to finish reeling!

bigcar · 27/01/2011 13:40

sent my renewal off 11 days ago, got a letter yesterday saying it's been renewed at the same rate we already have Smile although only for 3 years Confused like a genetic syndrome is going miraculously disappear . . .

I was also in the totally bricking it camp so I hope that can give you a little hope.

intothewest · 27/01/2011 14:02

It is stressful- To get higher rate care,you have to be caring in the night as well as day;so hopefully you will be o.k- fingers crossed for you Smile

Lougle · 27/01/2011 16:01

Marne, I know I am not on here much.

DD1 was on HRC/No Mob from 2008-2010.

She renewed in August and got HRC/HRM. Very similar you your DD2, except no ASD dx.

Peachy · 27/01/2011 16:15

Three years a waste of time abyway LOL as we know it all changes in 2013; probably a way of staggering reassessments?

DS1's is up soon, we don;t have much paperwork extra but we do have some stuf from Psych who will back us and a new statement covering aggression as well as his new palcement at the ASD Base so am keeping everything crossed but assuming nowt.

First applications have always been 50 / 50 at best though.

Last time I did ds1;s I wrote 'previouslyn X was wawarded HRC; I consider this remains the level appropriate because ASD is alifelong disorder by definition, and becuase of..... X Y Z. Seemed to work.

DS3's teacher referred to him as severely disabled to day so I guess my worries about him beinh kicked off it were delusional.

mompa · 27/01/2011 16:24

Sorry to highjack but my DS receives HRC and when he turned 3yrs I appllied for HRM found out yesterday after asking them to reconsider he has been turned down. I have written to paediatriican to ask him to write letter of support. Do they say why turned down in letter and is it worth appealing. Quite fed up. Even his portage teacher wrote letter of support and still turned down. Not sure what to do

mompa · 27/01/2011 16:24

sorry DS diagnosis of ASD

Peachy · 27/01/2011 16:29

They do give reaosn, but it's notoriously ahrd to get HRM with ASD: I;ve enver had it with eitehr of mine.

But it can be done, with decent advice. I woudl start a thread becuase I know a few people on here have the exact info you need to reference- they key is to indicate that ASD is a physical disability (it is, in many ways) arising from brain damage and that there is a clear precedence of being awarded HRM in such cases.

Do ask though, someone will ahve the exact details.

NorthernSky · 27/01/2011 20:14

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skewiff · 27/01/2011 20:28

Do you get someone to help you with filling in the form - all of you?

I have filled it in myself - but people say that it needs to be worded in a particular way (that only those in the know know about).

So I've been told to contact charities to ask them to help me fill it in. I feel happy with what I"ve written and can't really be fussed to go and get someone who has never met my son to go through it all with me.

But if its necessary then I will ...

Peachy · 27/01/2011 21:04

Brain regions differ but the corpus callosum has been linked a lot by research.

which does make it a brain injury.

Peachy · 27/01/2011 21:06

Skewiff I didn;t but had a lot of experience filling in forms for grants etc for Uni.

Am happy to look through DLA forms if anyone wants ( work in carer's support and asd, albeit for myself and used to work for homestart as a manager).

Always worth getting someone to look through, never hurts.

Alternatviely Cerebra has a wonderful guide to applying for DLA on their site.

crazypanda · 27/01/2011 23:11

try not to worry too much,if you got it last time chances are you will get it again,you do hear stories that are shameful,with people not receiving it when they clearly should,but if that happened and you appeal,you usually win your case.Itoo worried when we applied again before xmas,it took about four weeks to hear back,but it was fine,so good look.

coppertop · 27/01/2011 23:26

Skewiff - I use the Cerebra guide to write mine as they include examples of things that could fit into each section.

Generally I go with a template of:

"Ds' autism means that he .
When this happens he needs someone to .
Without this help he would .
A normal child of ds' age is able to "

Triggles · 28/01/2011 10:48

I am trying like crazy not to second guess it. We just sent ours in (finally) yesterday. I'm just going to put it out of my mind and worry about it when I hear back from them and take it from there. God knows, it's not like I don't have enough other things to keep me busy and worrying. LOL

I think once you've handed it over at the post office, you have to just mentally put it aside for a bit. It's such a long process and so draining, it's natural to want to rehash it in your head. But I'm trying not to. Blush

skewiff · 28/01/2011 19:13

Thank you for your advice everyone.

So you do have to do a template sort of description. This sort of thing really bores me, I'm afraid.

I've just filled it in with my best descriptions and answers and that took 2 hours- but I"ll probably have to get another form and fill it in as you just showed coppertop. I'll go on the Cerebra website and look at the guide (yawn).

The first time I filled it in (3 years ago) I did the same as I'm doing now - but we were turned down so I appealed and it went to tribunal - they phoned me up on the day of the tribunal and offered it to us at middle rate, without me having to go in.

I've been feeling that that was a piece of luck and actually when I look at the form it was filled in terribly - that's why I'm unsure whether we'll get it easily again.

coppertop · 28/01/2011 20:04

It might be worth starting a thread asking people how they filled theirs in. The template is extremely boring so hopefully someone else will have a better way of doing it.

Ds1's renewal is coming up so you'll probably find me lurking nearby. :)

skewiff · 28/01/2011 20:37

Ok - good idea - I'll do that now.

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