Aaaaaaaaaargh!!!! DLA

[Oakmaiden]

Having spent the past 9 months or so umming and ahing about applying for DLA for my lad, I have finally today sat down and worked out what to write in the form. It has taken me ALL DAY!!! 5 blooming hours!!!! And I haven't even actually filled in the form - I've just typed my responses on the computer, so I will have to copy them later.

Anyway, my main problem is going to be finding health workers to support my claim - because we don't actually see anybody very often, and the more recent your contact with the person you are asking the better, I am told. We have a contact (a specialist Health Visitor) in Child Guidance - but haven't seen her since last October, our last appointment with the consulatant was May, and I don't think we have been to the GP since last September. My son only started school properly just over a week ago, so his teacher won't do, haven't seen the Ed Psych for about 15 months, and only had one appointment with SALT, and that was 5 months ago and still haven't even received the report from that. Who do I ask??? Any bright ideas?

oakmaiden phone up the consultant and ask him if he could fill in the form.if not
Or do the same with your gp.

Also get an appoitment with your hv, maybe she could visit you at home and fill it in. Good luck btw.

You can get support from anyone - even any old neighbour type. Maybe a friend could write about all the extra stuff you have to do and then the HV could back it up with a kind of "problems of AS" type thing. Or she could talk to you and write it.

Ours was filled in by ds1's nursery manager- then I had the paed as a phone number to ring.

i find health visitors are great for helping with DLA forms. doctors sometimes charge for filling in forms, and i always find it carries more weight if i get my HV to fill in the forms. my last 2 awards have been based purely on the information which i provided and also the Hv statements. i usually spend about a week in the evening filling in the forms, making sure there isnt anything i forgot.
all your appointments seem to be winthin the 12month time they ask for, so good luck!!!

I know I've said it before, but don't forget to keep a photocopy once you've done it. You can crib for future submissions and, after all, its a work of art by the time its finished! I wrote to my consultant paed and GP explaining why I was applying for higher rate and asking them to support, i.e. putting words in their mouths! It worked but I do know them both quite well. I suppose HV would do although I'd be surprised if they did a great job of it...... do you attend any local playgroups? Anyone there? Wishing you lots of luck with it though, it certainly helps and, of course, its your child's right (I feel a rant coming on.....)

my Hv did a great job! but then my doc was pretty poor and they spoke to me more about my dd than the doctor.

Ds's consultant filled the form in the first time and he was DLA'd off for life. But 4 yrs later they wanted me to fill in another one, I spent filling it in crying co it really is an awful form. I mean how many ways can you write that your son cant walk AT ALL.His nurse at his school put down her name etc for DLA to get in touch with if they had any probs.
Truly horrendous form.

yeah, you have to do it every year until they're 5 and then its awarded for a set time which can be 4 years or even 10 years. THat's why you need to keep a copy because coming up with 100 slightly different ways of saying the same thing is hard work. I also hate that thing where you have to put how many minutes help they need, really stupid!

do they send a reminder? I must be due to fill it in again soon if I have to do it yearly. Oh joy of joys (I kept a copy)

Jimjams, you get about 6 months notice usually. They average about one letter a month asking you to fill in the form, whay haven't they got the form yet, do you still want to fill in the form, etc, until you send it back. Drives me mad. I'm drowning under the pile of letters, appointments and forms I fill in already, plus now we are back to school I have their bumpf x 3 . I wish it could all be done by email, I'm much more organised that way. Probably save a few trees too.

Do make sure that you choose someone who knows about how much extra personal care he needs though, or, if there's no one, try prepping a chosen person as Davros suggests. Failing that, at least choose someone who is likely to know that it's possible, nay highly likely, that a child with aspergers/HFA will need lots of extra care. The only reason a properly filled in DLA claim fails is through lack of corroborative evidence, IME, and that usually happens because ill informed professionals think there can be no extra care involved in looking after a kid who walks and talks. Well done for getting the form filled in, btw. It really is an epic, isn't it, and a depressing one at that. Hope it will be successful.

Oh God , feel sick reading this. My ds has the care mid rate component award for 4 yrs. But, next month he's 3 and so I have to do all the forms again to try for the mobility part. Don't know if we'll get it though, not sure if he's 'bad 'enough. Altough we've recently had a setback as they've decided he needs splints so we're off for a 'fitting' on Thursday.

Very best of luck with it all Oakmaiden.

Oh God , feel sick reading this. My ds has the care mid rate component award for 4 yrs. But, next month he's 3 and so I have to do all the forms again to try for the mobility part. Don't know if we'll get it though, not sure if he's 'bad 'enough. Altough we've recently had a setback as they've decided he needs splints so we're off for a 'fitting' on Thursday.

Very best of luck with it all Oakmaiden.

Best of luck oakmaiden with your form. We had a community nurse who specialised in special needs who helped us fill it in and filled in the bit at the back. We had to appeal and then got middle rate care. The paed said he would also help with it if necessary.

This has reminded me, when you have an appt with Paed, talk about DLA even if its not time for it. I did by chance but I think it was a good thing as, when it came time to do the form and I dropped him a note, it made some sense to him. Maybe its a good idea to mention it at lots of appointments?

Do you really have to refil in the forms every year? I was totally unaware of this? Oakmaiden my HV helped me fill mine in and she was brilliant, knew all the right things to put and stuff.

Ds was awarded indefinite higher rate dla last april. I rang to clarify when I would have to reapply , and was told I wouldn't have to, because his condition was obviously not going to improve. They will send me forms for mobility when he gets closer to three, but that's all. Seems pointless to be awarded it for a set length of time, to then have to keep reapplying. What a waste of resources.

we have reapply every year (higher rate) - do they think dd's chromosome might just go away or something?!
Usually got the paediatrician or the liaison nurse from the CDC to fill in the professional blurb.

i was told i wouldn't have to reapply for his mid rate care dla until his award time ran out - in his case 4 yrs. Cjecked that by phone today and it was reconfirmed. However things may be different for mobility - I dunno. I find a really useful website for information is www.youreable.com

Thanks all - I have an appointment with the specialist Health Visitor from Child Development for Thursday, so I will speak to her then. (I have never even met my HV - she is quite new). Downside is that we made the appointment and arranged not to have my son there, as I want to talk about him (obviously) so he will be at school. If i wanted to take him with me I would have to wait til late October, or take him out of school for the morning - neither of which is ideal (he is really only settling into school, taking him out for half a day would really confuse him).

Anyhow - i have decided what to write in the form, although i haven't actually filled it in yet - just printed it out. So I will consult with the HV and see what she thinks. I think I have filled it in honestly and comprehensively, and now they just have to decide whether or not he will be eligable.

my dd was 3 in august and we had previously been told that the mobility form would be sent to her when she was 3 ....two weeks after her birthday i finally got through to DLA on the phone, to be told"the form won't be sent this month it will be next month".Next month being October!!!but she was 3 in August-get phoning now if you're child is coming up to 3.

Hello Chatee, where have you been? Don't seem to have seen you around recently.

Just to let you know that we heard last week that my son has been awarded Higher Rate allowance, until Jan 2006. So that's nice - just off to phone the local music therapy centre - can afford it now!

congrats, oakmaiden! particularly on not having to reapply again until 2006!! Hope your ds enjoys the music.