Dx, what if overturned, DLA ???? not accepting dx

[Sax]

Hi I'm Sax (some may know me anyway from elsewhere - I'm not hiding by going under a different name, just trying to get some extra support at a difficult time).

I don't know if all this is going to sound OK but I just had a couple of questions for you wise ones out there. We've had a recent dx of asd for my 4yr old - i recently asked if they ever overturn their decisons - they said (I mean the Paed and the SALT) that they always want to be proved wrong and always continue to monitor.

Now, rightly or wrongly I have recently applied for DLA (I hope you guys don't shoot me down in flames cos he is very high functioning) but sort of think I may need to get private tuition in the future becasue our statement has been refused and I don't believe he'll cope at school and could end up missing out a lot - but I wondered if we get awarded it, what happens if the dx is one day overturned - do they claim the money back from DLA (I am aware we'll probably be refused it anyway).

I hope this isn't too rambling, not sure if i'm just kidding myself that dx is incorrect or if worried we will spend the money now but try to keep it later for education purposes but they might want it back and we won't have it.

Any ideas??

Hi Sax-we have had a recent diagnosis of AS for our 6 year old. I am currently waiting for a decision on my application for DLA as well (our DS is very able too).
My understanding is that you can get DLA even before (or without) a diagnosis, as the problems are the same whether you have a DX or not. So I dont see that they would be able to take it away from you if the dx was reremoved or changed.

Thank you Tiggiwinkle for your reply!

It doesn't matter what dx you have - DLA depends on the care the child needs at any given time. If you can show that your child needs extra care over and above that of another child then you can be awarded DLA

Hi Sax. There's nothing wrong with claiming DLA for HFA! I get middle-rate care component for my HFA ds1.

I'm in the middle of applying for DLA for ds2 (2.4yrs) as it looks as though he too has HFA. He has been assessed by a multi-disciplinary team and the Paed's official verdict in writing is that ds2 has all the traits of AS but due to his young age he will be re-assessed next year before getting an official dx.

The criteria is basically whether the child requires more care than a so-called "normal" child of the same age.If the dx is somehow overturned but ds still needs extra care then you could technically still get DLA. It would be more difficult though without the medical evidence but not necessarily impossible.

I think the only time you would have to pay it back is if you had deliberately lied on the form and were found out. You won't need to pay it back just because the dx is changed.

Not quite the same, but I claimed DLA before my son was diagnosed with cerebral palsy, I was giving him physio and he needed more supervision, so I claimed about 3 months before I was given the full diagnosis. he was awarded middle rate care, that was changed to high rate when he was 5.

Thank you for all your input - coppertop I have not lied on my form at all but as recommended by numerous people I have set the worse case senario, ie. my worst day or worst moments on that absolutely shit, draining horrible form. It was very soul destroying but i'm glad to have completed it and its out the way and just wait and see.....

When did you send your forms in Sax? I sent mine off over 5 weeks ago, but apart from the standard acknowledgement I have heard nothing yet.

I am not coping very well at the moment and have a lot of self doubt - high functioning but getting more difficult in other areas - not sure if age related, asd or mixture (probably the latter) but the stubborness is overwhelming and the 'digging in heels' is and the 'stropping' and everything seems like a challenge. Part of me blames the asd but most of it blames me and my inability to cope with it - I know and should expect different stages in life but sometimes it does all seem a little too much. It makes me feel twice as guilty though when you hear of the challenges of some people and their special needs children, becasue thats when you realise its how you cope and not the disability that counts.

Tiggi, only sent mine in last Tuesday so long wait ahead I feel (although I have heard it can be quite quick if they refuse???).

Sax - I didn't mean that you had lied. I just meant that the only grounds they would have to take the money was was if the person applying had deliberately lied on the form.

I've sent section 1 in but am still struggling through section 2. "Soul destroying" is a good description.

Struggling with the form Coppertop - its such a hard form. I was lucky to have lots of advice, don't think i'd have bothered otherwise and I did realise you weren't saying I had definatley lied, thank you for the clarity though and good luck with your form. Takes ages doesn't it!

Hi Sax - ds has AS/ADHD and was refused DLA, but due to the insistence of the lovely MNers, I wrote a long letter with their help and the decision was reversed.

I, like you feel I don't cope well sometimes - especially on days where I have organised something special (last week Thomas' 60th Anniversary at Hatfield House and today a Transport Festival). I really wonder why I do it as he doesn't appear to want to do anything but buy things - with my money of course - and strop or run around wildly. Someone usually ends up getting hurt and he just doesn't seem to enjoy it. I always say to my sister "remind me not to do this again, won't you", but then continue to do them. He was awful today, but again, like you I know that other people have it a hell of a lot harder by miles than I do, but it is hard to remember that when they're in the middle of a meltdown in public.

Do let us know how you get on though please.

Sax,

On a different matter on what grounds was the statement refused?.

Have you talked with IPSEA about the refusal, it may be something you want to consider. Have you thought about appealing the LEA's decision?.

Basically E.P. did an assessment prior to dx and came to conclusion that ds1 was borderline! But for now no statement was warranted - then after dx the Paed suggested he be re assessed however EP decided that although he had a dx that nothing had changed. He is now going to be assessed about a month after starting school to see how he is coping and we will apply for a statement again if he isn't!!!! Not sure if this is clear!

I think it may be at least partly the age tbh. My ds1 is 4 (5 this month) and the stubborness is really starting to come out. It's as if he's testing out every boundary he knows. He pushes for things he knows that he's not allowed to have/do then flies off into a mini-rage when he doesn't get them.

Sorry you're having such a tough time, Sax. xx

Oops! Crossed posts there. I was talking about what you posted at 1.59pm.

Choc, sorry to hear your nice plans went wrong
Sax, I think you should apply, of course you should! It is so hard, we should all get something just for completing the forms! Even if you get turned down, MN will come to the rescue I'm sure! As others have said, it is not a comparison between hf, lf, severe etc but with NT.
There is no way they will ever ask for any money awarded back, it is correct at the time and therefore, even if things change, what is appropriate at the time doesn't. Also, remember that its your child's money in theory, not yours as its based on their needs so don't worry about how much you can cope etc, that's not the point. The only thing we are all supposed to do is inform them if something changes at the time, and even then I would say that would have to be something pretty major such as change in dx. I am expecting DS to get an extra dx of Tourettes very soon and I'm actually going to keep it back until we have to apply for DLA again so we have extra ammo in case they muck us around!

Thank you Davros! I hear what you are saying.