DLA renewal....how long to hear,and no new supporting evidence.

[logi]

Hi i sent off my son DLA renewal 5 weeks ago and have rang today they have said it hasnt been looked at and i could be waiting up to 11-12 weeks :( i am worried incase they stop my sons DLA although things are more difficult now,i havent had any new evidence to put in as we dont see professionals very often ..although we have CAF meeting november ...i tried to contact his nurse to see if she would write a letter but she is on leave ..............................how long has anyone had to wait for a renewal? and what new evidence did you provide.....................my son has ASD and is almost 8 and very poor sleeper....thankyou

anyone ...please

Try asking where your nurse works - most nurses leave their casework in someone else's hands whilst they are on leave.

Our recent review was done very quickly, then a telephone appeal we were told would take 11 weeks actually only took 6, so maybe not as long as they say.

I would warn you that they seem to be turning lots of people down atm. Dont give up though. I am going through the appeal process now.

Good luck.

The appeals process is needed more now- but for many is as simple as a latter: prepare for that and assume you will need it but don;t panic either

Evience doesn't need to be new really, after all letter of dx is a lifetime thing

What i would do if it is all dragging out is compile a diary for a few weeks of his needs, you can then send that off to them as a 'back up', they do seem to quite like those.

If they turn you downa ssume they;ve not read anything and are trying it on: hurts the soul a little less! make sure you sent old paperwok copies in though as they won't back check.

Thankyou,i never sent any old copies so will dig them out today and i will ask where my sons nurse works to see if they would write a letter.

I have wrote all over this renewal that his ASD is a lifetime thing and things are more difficult now.

Yes i was thinking i can see them refusing due to cutbacks.He currently get HRC/LRM.

It is very stressful isnt it.

good luck with your appeal "PositiveAttitude" .........like your name :)

Thanks logi
Yes, very stressful. I really could do without having to prepare and produce a whole load of evidence to prove that my daughter is virtually housebound!! As if I have not got enough to do!!
Sometimes my nickname is wishful thinking, but I try to stay positive.

Don't panic Positive!
I think they just give worst case scenario when it comes to how long the DLA will take. Remember that when they send out report forms to third parities they need to give them x amount of time to reply, then send reminders if they haven't heard, wait a while, etc - so that is often a cause of delay, rather than anything sinister.
It isn't really necessary to send copies of dx, professional evidence at this stage - DS is 13 and I have done several renewals and one of their random reviews; I have never sent any supporting documents from anyone else - tbh they ususally contact school, the consultant and nurse (who is the person I name) directly to get confirmation.

I am about to send DS's off too. He currently gets MRC and I am worried he is going to get cut and that I havent done a good job representing him even though I think I have done the best I can. I hate the waiting.

Good luck Log and Positive :)

That's probably the difference starfish; whilst ds1 (longest claimed for) attends an Snu, it is standard for ASD kids to be discharged from health here after a year post dx, so no back up professionals hence sending all info.

Thanks AZombies, Peachy my son was discharged from from CAMHS but we were given the number of a nurse (who originally seen ds) to ring should any problems arise.

I have contacted people who work with my sons nurse and they said they will email her to ask for letter.

That's good, I know ther is an ASD nurse here but despite having two diagnosed and one in the system both at SN Bases (one a speiclaist ASD base) have never been given her name not seen her- she probably resigned four yeras ago and was never replaced for all I know!

logi I was told today that I should phone up the CAB and ask to speak with a "Welfare Rights Officer". I have phoned and he will get back to me on Friday, but it seems he will help to the appeal and get it sorted.
I have also phoned DLA place (too late for my brain to remember the proper name for it) and they are going to send me a copy of everything they have made their decisions on so far. (I stupidly did not photocopy the original renewal form because I assumed it would all be fine!! )

It feels like a massive job needed for me to prepare all the information and diary etc on top of actually caring for DD3 and looking after my other 4 DCs and trying to keep my 3 jobs going too. I am beginning to feel a bit overwhelmed by it all. I think the government really just want to make it as hard as possible so that you give up and I can totally understand why people do just give up. I hate having to do this and fill these forms in. It makes me feel as if I am moaning about all that I do for her. SHe has such a miserable quality of life, I cant believe that people sat in their perfect offices with perfect lives can think htis type of life is acceptable for a 17 year old girl.

Positive ...i can imagine how much of a massive job it is for you and your right sadly i think the government do want people to just give up ..but the fight is for your daughter so keep going ,im very stressed just waiting so dreading having to appeal ...its very frustrating especially when a disability/condition is lifelong ...just explaining your situation over and over and like you said you feel your just being negative about your child.

I didnt photocopy my original form but rang them and asked for a copy (a long time ago) and they sent me one...it will be interesting if my sons DLA does change as i used information from first one also added on our addtitional problems since then.

hi logi.......i had to phone dla up last week, as my nast xh reported dd to dla and got her money stopped, xh told them dd hasn't got any problems and dx paperwork was forged by me on computer.(been trying to sort it out for last 8weeks) i spoke to the decision makers dept last week and was told all decisions are being done in date order and they are taking at least 12 weeks, not sure if this is any help to you

davidsotherhalf have you had much contact with DWP over this? Anyone I have known it happen to has actually taken far longer as the 'decision' has been to investigate fully and involves face to face interviews. I'd probably get advice if I were you and at least you will then be prepared.

Hi thanks davidsotherhalf........how awful that your ex. did that and a call from him can be enough to stop your DD s DLA ,hope you get it sorted.

i sent dla medical reports from the last 6 months, some are only a six weeks old, i was told it will be reinstated but it has going to take at least 12 weeks. i also sent them details to contact consultants that dd has seen in the last month, so hoping it gets sorted.....this is mild behaviour for xh and he's not allowed to see dd as he's abusive

I just want to let you know that I contacted my MP today and he is really taking my complaint very seriously and is looking into it. I am not sure it is going to be any good for me, but if it can stop someone else having to go through this then it has been worth it.
I will let you know if I get anything back from him.

I spent 3 hours putting together information for the appeal today and I am not even anywhere near half way through. I feel so sorry for those people who are not well enough to do this themselves (DD would never have been able to do this appeal alone) it would be so easy to give up and I am sure many people do.

Well done Davids although it is terrible that you had to do it in the first place.
I have always found the people on the helpline very pleasant and helpful, which is one positive!!