Dla first claim advice?

mummyjonno

I'm new so I am not sure I am posting in the correct place but I hope I am.

My husband is a soldier and we moved to Germany in November 2010. Our son's autism was picked up on in January 2011 after 8 months of appointments with salt, health visitor, getting him into preschool or FS1, social worker and paed they wanted him to but put on the waiting list for the accessment so we flew from Germany and saw a paed here who had zero issues putting him on the waiting list but informed our paed in Germany that the accessment couldn't take place while we lived there. The army then posted us back on compassionate ground in November 2011.

I was recently informed I should be claiming DLA as he needs 24 hour care and to get carers allowence and benefits for him I had to claim it. I filled out the booklet and sent a good chunk of paperwork off with it (the paperwork alone was double the thickness of the booklet) and thought that's that.

I called them today to be nosey and see if a decision had been reached (it's only been 4 weeks but I thought i would check anyways) I was then informed they have sent a question pack to his new doctors surgery for them to fill out.

The problem is these people have never seen him due to his autism. He has salt, pead and preschool here however i put all the recent reports in from Germany and specifically informed them that the people here had not known or experienced enough of my son to give any kind of statement however the professionals in Germany would happily provide anything they needed.

The only people in the doctors that have seen him is one who had to represcribe his melatonin (she has now left) and the health visitor who has seen him once in 6 months (who has now retired)

How on earth can they get these forms filled out properly when they don't know him at all?

Also does anyone know what the time frame is that the doctors have to send it back and how long the claim takes to come through dependant on what is sent back?

I know a little long winded I have tried to write it as simple as possible so easily understood.

Help/advice would be very appreciated.

[Deleted User]

ok welcome to mse
claims can take anything upto around 13 weeks,but if you havent heard anymore after 8 weeks phone them
its possible is it not that the gp will have access to his records and will be able to report using them?
but a gp report is only part of the process and if you have sent alot of other supporting evidence this will be a big plus

mummyjonno

Thank you for the welcome I am not too sure how they'll be able to fill them out. I'm not entirely sure what's in his medical records and what's not.

Just feels right now that this report will make it or break it even though they have atleast 60 documents alongside it

SuziQ

It certainly complicates things to be in your position. My advice, as a Health Visitor and mum of a child with autism, is to make an appointment asap with your GP- preferably a double appointment - and take your son in. Discuss the issues with him and ensure the GP is appraised of the difficulties you have. You don't need the diagnosis to get DLA, you need to have described in the form exactly how his care exceeds that of a child the same age, and what would happen if he didn't get that care-ie I have to supervise my 10 your old through the night as he sleeps poorly and can be a danger to himself, getting into the electrics etc. If your son sleeps with the melatonin (it didn't work for us, plus our local authority now refuse to prescribe it)then you won't have that difficulty.

Invite the GP to call you if the form arrives on his desk-mine did that when he received an insurance form when I had cancer-he said he wanted to make sure he had all the info he needed to complete the form properly-if your GP is willing to do that, then you will stand a much better chance of being successful with your claim, but only if your forms were also completed in a way that satisfies them that your son requires a lot more care than another the same age.

Good luck!

Notmyrealname

Please please please join the national autistic society forums. There's a wealth of advice and help on there. There may be a local support group who can help you complete the forms.

SuziQ

There may be a local support group who can help you complete the forms.

The OP has already submitted their forms though. She now needs advice with supplementary evidence.

The national autistic society is fantastic though I agree.

mummyjonno

Thank you guys I really appreciate it and I will find some time to join today

When I spoke to the receptionist at the doctors she said call back Monday as they hadn't got the paperwork yet (they informed me it was sent to the doctors 3 days ago) and that I should book an appointment with the doctor who will be filling it out.

I don't know who this will be as we quite literally have not really used them since moving here but the last one was very unsympathetic. While trying to get the represcription of melatonin she tired to fob me off with tablets "because they are cheaper" even though he's had the capsules for several months. Then when told that they only work for some of the night (7-12) then he wakes her reply was "well go to bed earlier then". What fully grown adult sleeps 7-12 and then stays awake all night long? To top all of this off I am due with my second child in a little over a month and he currently wakes more than a newborn does!

Hopefully I get a decent and semi sympathetic doctor to fill it out with and they'll do it while I am there. Although his medical notes may outline the medical side of it they don't show even slightly the difficulties we have to deal with on a day to day basis.

xx

Notmyrealname

The trouble is though it is what you put on the form that makes the most difference, not the supplementary evidence because they want to know what you're having to do extra, not that the child has a condition.

By the time we claimed, our child had been statemented. We sent in a ream of stuff. The stack of paperwork must have been over an inch thick. It contained the statement, a SENCO report from his school, paediatricians, child psychologist report in addition to the GP report and we got it declined.

It was only with the help of a local support group that we got awarded DLA and after filling it in with their help we got higher rate mobility and care. The problem was we weren't putting in things that we should have been doing because we'd been doing them so long it was second nature and done without thought. The person in the support group pointed out to us that the things we were having to do weren't what you would have to do for a normal child. Even little things such as having to have special plates with "compartments" on so the mash potato didn't touch the fish fingers for example. We never even thought of putting that down but did in the appeal. Likewise the fact our son goes through a set of shoes every 6 weeks because of the way he walks. The fact he can never go for a walk alone because although he knows to look left and right when crossing the road, he can't associate seeing an oncoming car with having to wait or he'll get run over. On his own he'd look left and right and then just step out into the road. If something triggers a panic attack, he'll just run away from it with no thought for his own safety which will inevitably involve running straight out into the road if in town and a trigger can be something quite innocuous which you or I wouldn't pay a second thought to.

As to melatonin, please try Behaviour Balance DMG which is recommended on the NAS forums first. It is available from Victoria Health here in the UK.

Liquid:
http://www.victoriahealth.com/product/Behavior-Balance-DMG-Liquid/2431/0/

Tablets:
http://www.victoriahealth.com/product/Behavior-Balance-DMG/3366/0/

It helps in about 50% of people with autism and you should notice a difference within a week. Basically it reduces their stress and makes it easier for them to cope with the world. It turned our son from someone who was starting to trash school classrooms to someone who is a lot calmer and is coping better. We ran out once and within a couple of weeks the teacher at his school was asking if we were still giving him it as his behaviour went downhill so for us that was a true blind test. A few years on he no longer needs it other than every now and again when something is happening in his life which he has trouble coping with - usually the start of a new school year.

Order the one bottle to start off with. If it doesn't give you noticable changes in a week then stop using it. If they do work you'll notice your son sleeping better. With our son he was waking up terrified because he was having dreams. The dreams weren't nightmares but he couldn't process what a dream was because it wasn't real and kids with autism have problems dealing with things that aren't as they should be. We can't take our son to Disneyland because he will flip if he sees someone dressed as a character because in his mind they should be on TV, not walking around.

The Behaviour Balance DMG is far better to try first because its basically vitamins and minerals and doesn't cause drowsiness and he'll sleep naturally.

blossomhill_2

Your Army Welfare p.o.c. should be able to put you in touch with someone who is very experienced with the ins and outs of this

mummyjonno

Notmyrealname wrote: »

The trouble is though it is what you put on the form that makes the most difference, not the supplementary evidence because they want to know what you're having to do extra, not that the child has a condition.

By the time we claimed, our child had been statemented. We sent in a ream of stuff. The stack of paperwork must have been over an inch thick. It contained the statement, a SENCO report from his school, paediatricians, child psychologist report in addition to the GP report and we got it declined.

It was only with the help of a local support group that we got awarded DLA and after filling it in with their help we got higher rate mobility and care. The problem was we weren't putting in things that we should have been doing because we'd been doing them so long it was second nature and done without thought. The person in the support group pointed out to us that the things we were having to do weren't what you would have to do for a normal child. Even little things such as having to have special plates with "compartments" on so the mash potato didn't touch the fish fingers for example. We never even thought of putting that down but did in the appeal. Likewise the fact our son goes through a set of shoes every 6 weeks because of the way he walks. The fact he can never go for a walk alone because although he knows to look left and right when crossing the road, he can't associate seeing an oncoming car with having to wait or he'll get run over. On his own he'd look left and right and then just step out into the road. If something triggers a panic attack, he'll just run away from it with no thought for his own safety which will inevitably involve running straight out into the road if in town and a trigger can be something quite innocuous which you or I wouldn't pay a second thought to.

As to melatonin, please try Behaviour Balance DMG which is recommended on the NAS forums first. It is available from Victoria Health here in the UK.

Liquid:


Tablets:

It helps in about 50% of people with autism and you should notice a difference within a week. Basically it reduces their stress and makes it easier for them to cope with the world. It turned our son from someone who was starting to trash school classrooms to someone who is a lot calmer and is coping better. We ran out once and within a couple of weeks the teacher at his school was asking if we were still giving him it as his behaviour went downhill so for us that was a true blind test. A few years on he no longer needs it other than every now and again when something is happening in his life which he has trouble coping with - usually the start of a new school year.

Order the one bottle to start off with. If it doesn't give you noticable changes in a week then stop using it. If they do work you'll notice your son sleeping better. With our son he was waking up terrified because he was having dreams. The dreams weren't nightmares but he couldn't process what a dream was because it wasn't real and kids with autism have problems dealing with things that aren't as they should be. We can't take our son to Disneyland because he will flip if he sees someone dressed as a character because in his mind they should be on TV, not walking around.

The Behaviour Balance DMG is far better to try first because its basically vitamins and minerals and doesn't cause drowsiness and he'll sleep naturally.

Thank you very much, the good news is I was informed to fill the form out as if I had had the worst day ever with him every day which I did luckily. I did it alone this time but I will be sure to get help on the next one depending how this one goes. I think I included everything that needed to be included and wrote a 2 page extra statement to go with it and along side the documents. They got the pard paperwork (3 reports) the hv, speech and language 3 reports the paperwork for our move so they specially know we had to move because of his medical needs along with a range of other things.

I will be sure to try your recommendation too. I would love him to be able to have a good sleep and to be honest myself and my husband also. Xx

SuziQ

Thank you very much, the good news is I was informed to fill the form out as if I had had the worst day ever with him every day which I did luckily

For anyone new to this looking for advice, this is NOT the way to complete a form, and has apparently led to some people being accused of fraud . Making exaggerated claims can also lead to them looking into the claim more thoroughly and asking for more back up from professionals who may disagree that the worst day you described occurs every day-which may lead to the claim being denied

.OP, I am not having a go at you,I just think it's important for the best advice to be given out on these forums.

The honest way to complete these forms is to give the RANGE of care a child needs and in what proportion. I now keep a diary so that I can see what is happening, and how often. When completing the form, I then spell out the RANGE of care needed-so if for example I average being up with my son 3 nights a week for 5 hrs, I state that-I don't say that the worst night I have is every night,because that isn't accurate.I will then describe what care he needs on average for the other 4 nights There is lots of advice available about this -I used the DLA guide on this site

http://www.cerebra.org.uk/English/getinformation/publications/Pages/DLAGuide.aspx

to complete the first lot of forms for my son but now I keep a diary and understand what they need to know I can fill them out more easily, although it can take me a couple of weeks! I do know people as well who have submitted copies of their diary to show what life is like on a daily basis.The CEREBRA guide really does explain how to structure the information you give to what the decision maker is looking for. Above all you need to be honest, obviously.