getting worried about DLA / PIP

[thriftychicken]

I have been getting DLA for ds2 for the last 2 years , he has Aspergers . He will be 16 in February so if i understand correctly he will need to apply for PIP instead.
Ds2 has never accepted his diagnosis and mentioning it has always been a big mistake , so much so that we rarely do these days . He has no idea that i get DLA for him . I mostly use it to fund his expensive hobby which benefits him enormously , keeps him calm and not so depressed .
When he leaves school next may , he says he wants to work in a shop . I am really hoping he can manage this , that this will happen but i just don't know . He seems to think that if he can't find a job he likes he will just stay at home while we support him as he won't go to work if he doesnt like it .
He is very high functioning , tbh if you met him you probably wouldnt spot a problem .
I am worried that (a)if he gets pip he wont bother going to work at all anyway he will use his AS as a reason to not even bother

(b) He will spend the money the minute he gets it and then look to us for more .
(c) He may not get it anyway as he will probably look fine and tell them when they visit him that he is fine
(d) If i sit there telling them how he is at his worst ds2 will be badly affected and hate himself (as he does often)

sorry if this doesnt make much sense but i haven't been working due to needing to be around for ds2 and i am also not in good health now with the stress etc dh has been the breadwinner . the dla has been a lifesaver and i have no idea what is going to happen when ds leaves school , its worrying .
what do you think would be my best thing to do ?

Firstly.. I think you need to tell him! (and in retrospect not mentioning it was probably not a good thing, though understandable, as he may feel you have withheld 'his' money)

At 16 he may not have to reapply immediately.. it's rolling in gradually (my DS2 is 17 and hasn't had to reapply yet) BUT he will be considered capable of applying for his own, and dealing with his own benefits, unless you are made an appointee. You can't just say you wish to be, they will come and speak to you both (this will happen shortly before he turns 16) and decide.. and if they judge him capable (can he use money, understand basics?) then it will be in his hands entirely.

I am my son's appointee but we are reviewing it at 18 (my wishes at the time) however my son has learning difficulties with his ASD and is not capable so it is likely I will remain his appointee into adulthood. However I know of others who are just as incapable and they have been judged able to handle DLA/PIP/ESA etc themselves :(

I think firstly you have to tell him and explain that while UNDER 16 it was for you to look after him (and not his money to play with) at 16 he has to decide whether to apply again (and that he may or may not get anything) and that he will have to tell them that he wants your help to be his appointee if he wants help with the forms ..perhaps show him some sample forms!

And ..unfortunately, prepare yourself for the probability that either the PIP will be into his own bank account, or that (if he is high functioning) he may be turned down. I'm not holding my breath here , and my DS2 is not high functioning ...

I'm at the same point - ds will be 16 in November and we're starting on the road to PIP.

I've used it as an opportunity to talk in more depth to ds about his condition and the complexity of the claim forms. We talked through the DWP letter about appointees and I showed him a draft PIP form so he could see how difficult it is to complete them accurately and with a decent chance of an award. He was quite shocked at how vague some of the questions were and recognised the need for clever phrasing to make a clear point, which he also saw he wouldn't be able to manage. He was happy for me to be his appointee.

Your son WILL be assumed to be capable of making the application himself and of managing his finances unless BOTH of you make a strong case that he can't. I agree that you need to discuss DLA with him so that he has an understanding of the process, so that you and he can effectively communicate with DWP and make decisions about whether or not he continues to claim.

We are also using this as an opportunity to develop ds's independence and help him to manage his own finances. At 16 he'll get his DLA/PIP paid into his own account and we'll give him an allowance to budget for clothes, transport, social etc, with our assistance. It is very difficult, I think, with high functioning teenagers because they have such a mixed profile of things they are exceptionally good at and others that they find a huge challenge, and the variability that comes with anxiety to consider, too.

Contact A Family have a good information leaflet which explains the changes: CAF Guide

thankyou for the replies . All a bit daunting isnt it !