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Original poster

DLA

31 replies

fanjoforthemammaries7850 · 02/12/2009 14:54

Application being processed for DD (ASD).

Man phoned today from DWP saying they are aware of her needs during day as they have letter from hospital, but are not sure of her needs at night.

He then proceeded to interrogate me re what I have written in a really quite aggressive and disbelieving manner "what do you mean she wakes up" "why does she do this".

He had to go as their phones are not working properly and is phoning back tomorrow.

As advised I did quote what she did on a bad day, but I did not lie.

Am quite worried about him calling back.

Any advice?

TIA

OP posts:
PheasantPlucker · 02/12/2009 16:08

Stick to your guns. Don't let them bully you. And give them truthful worst case scenarios, backing up the fact your dd needs more care/help/input than an NT child.

Good luck x

Tiredmumno1 · 02/12/2009 16:24

poor you, sometimes they can be bloody terrible. i just had a quick look up about asd, and it says that one of the additional problems with asd is feeding, toileting and sleeping. you need to concentrate on the toileting and sleeping, this is sort of what you need to say to them if they ring back. explain your dd does not understand when she has wet so she gets you up to help her with nappy/toilet. and you are doing this 3-4 times a night, your dd has trouble getting to sleep and sometimes wakes but this is part of her condition and you have to be awake to take care of her, so she does not cause herself harm. i wish you luck. and i also say stick to your guns. do not let them push you around, you tell them what the problems are and make them listen.

Original poster
fanjoforthemammaries7850 · 02/12/2009 17:18

It was just awful, his horrid hectoring manner, I felt like I had to defend myself, now am going to worry all night until he calls back to have another go at me. Have no idea why he even needed to call, I wrote everything down. Does he think he will "catch me out" in a lie??

OP posts:
Original poster
fanjoforthemammaries7850 · 02/12/2009 17:21

Had a bad enough day, my auntie was hassling me to potty train my DD saying "any mother would at least try", and also saying I should walk everywhere with her and not use the buggy at all.

OP posts:
cyberseraphim · 02/12/2009 17:28

I was honest about the fact that Ds1 sleeps all night on the form but I got DLA very quickly. To your family member, I think you just have to say very directly that ASD children potty train at a later age and keep saying it like a stuck record.

PheasantPlucker · 02/12/2009 17:29

I think they select random people to call and grill. Try not to worry about it. This benefit exists to help us help our children.

Last time I had a letter saying they were taking the investigation further (It was a renewal, dd1 is 8 now) and writing to her main consultant. They came back to say they were satisfied all was in order, and granted the DLA for an extra couple of years before renewal next time.

Tis a horrid form at the best of times. Good luck. And sorry you had a bad day.

Original poster
fanjoforthemammaries7850 · 02/12/2009 17:33

They have got a letter from consultant. I think she might have actually said DD sleeps OK, as DDs sleep has deteriorated a lot recently, plus consultant is never 100% accurate in her reports. SO I am really worried it looks like I am lying when I am not. Am even worried I could get into legal trouble for making a false claim (although I am not).

OP posts:
chatee · 02/12/2009 18:09

hiya,
do not worry, they are just doing their jobs!

can i just ask, when did you send in your form?

only cos we are still waiting too.....since sept 12th, had one letter asking for a report from school and heard nothing since october

grr

Original poster
fanjoforthemammaries7850 · 02/12/2009 18:11

Thanks

It was received November 6th.

OP posts:
Original poster
fanjoforthemammaries7850 · 02/12/2009 18:11

Maybe school are taking their time with it? I hope you hear soon.

OP posts:
Peachy · 02/12/2009 20:41

I bet its the consultants letter

DS3 used to sleep. So the letter from the PAed said he slept, paed has since written to say thats all changed (we think he has developed ADHD as a comorbid, referrred to psych today).
can I get the MR put back to HR where it was? Can I buggery. I could of course have fought ahrder but they awarded it until 16 so I accepted the midroad.

Original poster
fanjoforthemammaries7850 · 02/12/2009 21:51

I fear you are right. It's annoying as I haven't even discussed her sleep with paed for months, well before she regressed, and was waiting until next appt came through to tell her it's now a problem.
I hate that they assume you are lying until proved otherwise. I didn't even want to apply for dla but the profs hassled me to, we are far from moneygrabbing.
Have asked sw for advice,he is one of the good ones.

OP posts:
CardyMow · 02/12/2009 22:21

GRRR DLA I have 3 forms for the kids(DD epilepsy, heart problems ASD MLD GDD partial deafness DS1 Coeliac disease DS2 chronic asthma, GDD, hypermobility syndrome hypotonia and plantar something to do with his feet but not fasciitis...) I've to fill in, been putting it off as it took me 5 years to get awarded it for my own uncontrolled epilepsy. GRRRR GRRRR ruddy forms from hell 3 times over this time....Anyone wanna fill mine in for me

waitingforgodot · 02/12/2009 22:22

Hi Fanjo
I was recently awarded DLA for DS aged 3 currently being assessed for ASD.
They called me up too to ask a bit more about verbal skills or lack of and I referred them back to the SALT.
Don't feel guilty-you are entitled to the extra support. You could always call up the paed tomorrow and suggest DLA tosser man contacts them directly.

Peachy · 02/12/2009 23:36

Er loudlass no ta LOL! Two isenough;in fact ifwe needed to claim again (ds4 could go eitherwayatm) wewouldn't unlesswe were desperate- ours used to both berenewd in June, arrrgghhh

Original poster
fanjoforthemammaries7850 · 03/12/2009 07:42

Well, DD obligingly helped me by being awake 4 times last night screaming. Not sure if he will believe me though since I'm pretty sure paed hasnt backed this up since I haven't had time to talk to her about this issue.

OP posts:
Original poster
fanjoforthemammaries7850 · 03/12/2009 07:44

waitingforgodot..I'd love to do that but the paed doesn't know how bad the sleep problems are yet. This is why I had been putting off claiming until she was properly diagnosed but I was strong-armed into it and health visitor was sent round to help me fill in the form, basically.

OP posts:
Tiredmumno1 · 03/12/2009 16:29

how'd ya get on fanjo, did the monster call back?

FanjoForTheMankySocks · 03/12/2009 16:31

Yes, and unbelievably he was super nice and sympathetic.

He said he has no doubt DD needs more care than other children and we will be hearing from him next week. He also said he hoped we are getting help with her sleep issues.

SO I think he was shouting because he couldn't hear me on the phone!!!

phew!

PheasantPlucker · 03/12/2009 17:49

Good news!

Marne · 03/12/2009 17:56

I had a similar convo on the phone after applying for dd2's DLA, a week later we were given higher rate.

FanjoForTheMankySocks · 03/12/2009 18:02

oh well, here's hoping Your DD2 always reminds me of my DD (and I hope my DD does as well as she is doing)!

Thanks everyone.

waitingforgodot · 03/12/2009 18:02

thats great-what a relief for you!

Marne · 03/12/2009 18:07

Sleep is dd2's main problem at the moment, fingers crossed you get higher (if you don't you must fight for it), there's nothing worse than broken sleep.

I hope your daughter does as well as dd2, i'm sure she will, its all hard work for us parents what with filling in forms, therapy etc but its all worth it.

FanjoForTheMankySocks · 03/12/2009 18:46

I assume she will get higher because he said "yes, she gets up during night when the household is asleep, that is what i am interested in"?

I actually see the work paying off already, even though she hasn't got the idea of PECS yet the interaction of it and the different people coming to the house is really bringing her on, and we are just starting the Hanen course and I have high hopes for that.

I hope your DD's sleep settles soon. Maybe it is extra unsettled as she was unwell, I know my DD's is after her recent bugs.