Should we apply for Disability Living Allowance for my DS (13)?

[ToffeeWhirl]

Friends of ours who have a child with SNs have just advised us that we should, but we have always assumed we wouldn't get it. And, to be honest, we have always hoped that his situation will improve.

DS1's diagnosis is Tourettes, OCD and generalised anxiety, with autistic traits. He is unable to attend school and has been home educated for a year now. He has a very limited life, as he is too anxious to go out unless it is very local (eg. for a brief walk to a park five minute's away). He can occasionally do longer journeys if he absolutely has to, but we all pay the price. We cancelled our holiday this year because it was so stressful last year and we realised that it was stupid to put all of us through the stress again.

However, DS1 wants to go back to school and he is having CBT treatment to help him cope better with the OCD and anxiety. He tried to do an insight week at a school a couple of weeks back, but couldn't stay longer than a couple of hours at a time. He is going to try again in September.

I never give up hope that things will improve, so that is why I never apply for financial help. But the truth is that I can't work because I have to look after him full time and educate him. Even if he manages to go to the new school, his attendance may be erratic, thanks to his anxieties.

I suppose applying for DLA feels like accepting the situation and I don't want to accept that this is never going to change.

Definitely. It has really helped us, especially with the boost to tax credits.

Sounds like he needs significantly more support, supervision and help than others of his age so you should apply. It's soul-destroying to fill in the forms as you have to paint the worst case scenario which, from your post I think you will find particularly difficult. But it's worth it to have the financial means to do a little more for him. Best wishes.

My ds also has OCD as his main issue. We always hope it will improve and currently it is but he still needs significantly more input than a teenager with no additional needs.

Applying for it is hard but it doesn't mean that you are saying that it will never get better, only that it is likely to be fairly long term.

Ds's OCD means that we have and are spending a lot of money on things that he needs to cope and the DLA is invaluable for that.
I also claim carer's allowance as so much of my time is spent with him.

Don't forget to claim the mobility element (lower rate) too if he is unable to go out without a lot of encouragement and supervision.

Yes you should, the form is mentally difficult to complete,we found great help from our local princess trust for careers in helping us fill it out.

What about respite help?

Thank you for the advice and encouragement, everyone. I have downloaded the Cerebra guide (thanks, PolterGoose) and read through it. There is more there that applies to DS1 than I had realised, so I will definitely apply now.

NoHaudin - I hadn't realised I could claim for the mobility element, but it's true that DS1 can't go out without help because of his anxieties.

I didn't know it could boost tax credits too, golden. Am kicking myself that I didn't do this earlier now. We have spent so much money trying to help DS1 and it has been very difficult on DH's salary alone.

idiot - luckily, my MIL moved nearer us a couple of years ago and she is an invaluable babysitter for evenings out, so we don't need respite care. I can't imagine we would be eligible anyway. Holidays are out of the question, but we have accepted that.

Thanks again for everyone's help.

DD2 got mobility element (which surprised me) as she needs someone with her just in case, rather than having "actual" mobility issues (as in physical difficulties). Just fill in all the sections, using the boxes to explain stuff that doesn't fit into the yes/no tick boxes.

We get mobility because DS2 hasn't got a clue about where he is, what time it is or how long he has been out.

Sorry, Luv, but that made me smile. It rang a bell because DS1 never knows what day/week/year it is and often doesn't know the most obvious things.

IShall - thank you, that's encouraging to hear. I made the same mistake, assuming that, because DS1 can physically walk, he wouldn't be entitled to mobility allowance. However, it's true to say that his walking is limited by his mental issues, ie his anxieties.

It is definitely worth applying. I didn't bother until DS was 15 because I had been told I wouldn't get it. This turned out to be totally untrue.
There is a temptation to tell ourselves 'He isn't that bad' because it can be hard to face the reality.
As well as the Cerebra guide it is worth finding someone with a child of similar age to compare notes with. It makes you realise how much extra you do for your child over and above what an 'average' parent does for their child.
If you can get a local charity to help you fill in the form that can be a great help because if they are used to doing it they can help you with wording etc.

That's a good idea to compare DS1 with a child of a similar age, pussycat. I have found a local carers charity which can help with the form, so will be contacting them.

Thanks for the tip on the Princess Trust, idiot. Googling that was what led me to the local carers charity.

Have been awarded DLA for mobility and personal care. This is going to be such a help. Thank you all for your help and encouragement.

Brilliant.
And for the mixed emotions that come with DLA 'success'

Thanks, Maria .

Glad you have got it. It will help.
If you are not working as I think you said and the care element of DLA is midddle or higher, you can apply for Carers' Allowance for yourself.
Apart from the additional money I finds it helps to have some recognition, however meagre, that I am actually doing a full time job here.

Only got lower rate, NoHaudin, so I'm not eligible for carers' allowance, although I haven't been able to work since DS1 became too ill for school. Still, I am delighted to have some extra money coming in to help.

The CBT-ERP treatment is really helping him, by the way. Thanks for your earlier help in getting that.

Glad to hear that the treatment is helping.
Did he try a taster at school in September? And how did it go if he did?

NoHaudin - Thanks for asking. He tried a taster at a Steiner school before the holidays and couldn't cope at all. He only managed a few hours. However, he hadn't started the therapy then. Once he started CBT, he came on in leaps and bounds. Then he decided that he wanted to return to his secondary state school (much to our surprise) and the school have been really supportive. He is starting at a pupil referral unit later this week, then having a phased transition back into school after that. I'm sure it will be a bumpy road, but I think we have the support in place this time .

How is your son doing?