dla - do you think i will ever get it????/

[bjkmummy]

son was dx with as in march. applied for the dle pack but was one day late sending it back cos i had quite a few others things goingon at the time!!!!

 

got a letter saying they wanted to know why i had send it back a day late so duly completed it and sent the form back

 

then got letter saying they were waiting a report from paed. this went on for about 6 weeks. i sent with the dla form a written dx from the paed but they still wanted report

 

now they have sent form to the gp!!! who has rarely seen him. i have also moved but not yet got round to moving bens notes to new address (bad mum!!!) so spoke to gp receptionist who arranged for a week later (which was today) for the gp to phone me to complete forms. theres copies of bens dx so why they cant just do it i dont know

 

waited in today for gp phone call - never happened so phoned surgery - they had they say phoned and left a message last weds (they didnt!!!) to say that gp needs to see ben!!! so now got to drive quite a way to the surgery a week on friday to see go. - so quite a few more weeks wasted!!!!

 

what questions are the dla likely to want the go to answer??? does it sound good / bad they we are going / not going to get dla????

 

incidentaly my younger son dx yesterday as being on spectrum so another paed advised me to claim for joe so im going to have to do it all again!!!!!

[cmuir]

Hi

 

I was successful in getting DLA for my 4.5 year old son, just prior to getting his official diagnosis. I photocopied a couple of reports, one from his nursery manager, the other from his educational psychologist. I was fortunate that they were both very supportive and I can say, hand on heart, everything that they and myself wrote down was completely truthful and accurate. On which, I detailed what day to day living was like ie Robert on numerous occasions has said that he's going to run out in front of a car and he actually tried to to it! I also gave examples of Robert's sensory issues ie he puts his hand in scolding hot bath water and doesn't appear to feel it. Also, the fact that Robert awakens every single night and has to be settled. Robert will ask for a bath at 2.20am!!! He has no concept of time and has to be told when to get ready for bed, etc. I don't want to put words in your mouth because each case is very different. Just be honest and detail everything that 'normal' kids don't do. The criteria for DLA is that your child is harder work than a normal child of the same age. Even in bullet point format, give details of odd things and things which can put your child in danger, etc. I gave a long list of contacts (about 8) of everyone that has seen Robert. The list included my GP and health visitor who categorically told me Robert did not have AS, and whom I may add have seen him once in a blue moon! But put down the people that did matter on the part which asked for people that could be contacted. Note down the people that matter even if they're not doctors, eg nursery/school teacher, care worker, etc. Be aware that it did take a long time and they did send me letters telling me they were looking into the claim. I think they have to make a decision within something like 49 days. Best of luck.

 

Caroline.

 

C.

[Bagpuss]

The first time we applied for DLA for our dd (5 ASD & muscular dystrophy) we applied in the Feb and got decision in June. They contacted every man and his dog for a report, including GP who, like yourself, hardly saw dd. They also sent a doctor to the house, which we were really uncomfortable with, but it turned out to be a positive visit and quite straight forward. When it was due for renewal Feb this year, we thought if we sent copies of all reports it may speed things up(although we did apply for renewal 6 mths before claim ran out as advised by DLA) . So copied up to 40 odd pages of reports from every professional involved in the care of our dd, and a full copy of her statement and enclosed it with forms. They still contacted school for further report I've never understood how ANYONE manages to con the system, when genuine cases like ours are so thoroughly investigated, and I do wonder why money is wasted on doctors visits and paperwork involved in requesting unnecessary reports. I suppose they MUST have their reasons for doing these things.....just I've never been able to figure them out Good luck with it <'>

[LizC]

Hi it can take a while. My son got dx with AS in sept. we applied for dla in march and only got the letter back the other day to say that matthew is to get it. the school had to send a report and the pyschiatrist that dianosed Matthew had to send one too. we are so pleased, he is getting the higher for personal care and the lower for getting about. I am sure you will get it (he is entitled to it!) keep at it!

[pumpkinpie]

There is an absolutley brilliant site I would recommend for anyone doing dla www.benefitsandwork.co.uk

I think it was well worth subscribing to and it helped me a lot with our dla form!

[lotty]

it does take ages, with me they sent a letter to school, school filled it in and basically said my son was fine and able. it got refused on the grounds that my son doesnt need night time help and is not incontinant, i phoned them back because these actually were the reasons why i had applied for it, incontinance night time wakings for toilet sleep walking and the school had no idea about our night times, an appeal went onand this started feb i am still waiting to here the results,

[pumpkinpie]

On the form you can specify who they can or cannot contact! I stated my health visitor only same as last time. Ok they sent a doctor out but I wasnt hiding anything its just schools just dont get it when It comes to our kids! I didnt want them complicating things by painting things too rosy - it aint like that at home!