DLA form help needed please

[partybags]

my ds is 10, and up to now I haven't claimed DLA. he has ASD, and is in a special school.

I have a mental block about the forms, and haven't been able to face them. I have convinced myself it would be a waste of time, as so many people are turned down.

BUT.

The time has come. I need help to get through the day, and I can't afford that help. I have been doing everything for him for so long that I am not even sure what is 'normal' anymore. Except my 2 year old is a lot more independent is so many ways.

So, where do I start? I have looked through the forms, and the questions are so vague as to be pointless. How can I build an accurate picture of everything I do which exceeds what a typical 10 year old needs help with, when I don't even know those boundaries myself?

Any pointers?

Hi, I am no expert but didn't want to read and run. There is a cerebra guide to completing the forms which you can download- I understand these are a good point of reference.
Also you have to base it on worst case rather than best case- which is hard to write and face.
Also keeping and submitting a diary of extra time is useful.
Best of luck x

thanks. I'll look up that guide.

I am getting discouraged already. Before I've even got to the bits about how much help/what kind of help, there's a question on 'when did your child's GP last see the child about their illness or disability'

GP has never seen ds about his ASD . We've lived here 3 years, and I'm not sure GP has seen ds at all, tbh. We have no paed (discharged years ago - maybe 4 years ago?) and have never had OT/SALT except at school.

I really can't see this claim going through.

Don't worry.

My DS has not seen any GP or Paed for his ASD in the last 6 years but we've managed 2 renewals in that time.

Where to start:

Definitely download the cerebra guide.

Get pen and paper and start making notes of how much time a day you spend helping him.

Write down everything that you do for and with your son.

For example if you go to wake him up at 7am and he ignores your repeated calls to get up until he emerges at say 7.30am - write that down.

Do the same all day for as long as you can - say 3 days min.

That will give you an indication of the sorts of activities you do because of his disabilities, how much longer they take than usual, because of his disabilities and also some timings to use on the DLA form.

You'll see that you should use the same format for every section of the form along the lines of

what are his disabilities
what causes them
what help does he need
example from real life
what happens if you don't provide that help

^ you'll need to check the cerebra guide as it's a while since I last filled in a DLA form so you'll need to look at their advice.

What you're trying to show is the extra help he needs over and above the needs of a similar child who did not have his disabilities.

I always photocopy all the reports that are relevant and send them with the claim form.

Don't try to fill it in online - just type it all out on your own PC. You can then save it and alter it as many times as you want before committing. Don't feel constrained by the ridiculously small boxes they provide for information. Use as many additional sheets as you require. I think my first claim was around the 30 page mark. But a lot of it was cut and paste repetition of the same information in the different sections - don't assume they read the whole document each time so be as repetitive as you need to be in each section.

It seems daunting but it's OK when you get going.

what wetaugust said ^^

also, if your DS is at special school he probably does have a statement of SEN. send a copy of it along with all other reports you send in.

also, have you checked if you council has benefits advisors who can help with tbe DLA form (our council does). or maybe CAB?

and the cerebra guide is invaluable
www.cerebra.org.uk/english/getinformation/publications/pages/dlaguide.aspx

also, if you call the dwp they will send out a form which you have to complete within 6 weeks. if you get DLA, the claim will then be backdated to the day you requested the form.HTH

Hi partybags.

Our DS2 is 5 (just started year1 on wednesday) and we just made a claim for DLA this summer. Several other parents of other ASD kids encouraged us to apply for DLA - I didn't know if we'd qualify, as he doesn't yet have a diagnosis (still waiting for assessment) but we just heard this week we've been awarded DLA (lower level mobility and lower level care) which will make a big difference to us and him, as we are on a very tight budget.

This was the advice I was given by others:

• describe your worst days, and write it as it is (even if it makes it sound terrible on the form - I found it hard to write down all the stuff he struggles with, rather than the stuff he can do, but you need them to know what it is usually like, and how disruptive it is, and how much extra time it takes)

• send any supporting evidence (IEP from school if you have one?)

• Get someone to do a support statement if possible - our local schools and families worker did one for us

• read the cerebra links above - that was really helpful for me to know the kind of answers needed

• talk to other parents of ASD kids who receive DLA - they might be able to help - I found that helpful for us

We don't yet have a diagnosis, and only had 1 medical bit of information (paediatrician letter ) and 2 IEPs , but it is needs based assessment for DLA, not diagnosis based, so if you describe his needs and challenges, that should be enough - although of course it helps to have official letters/reports from school or NHS to back up what you are saying

I kept a diary for a while of his behaviour to help me give examples of what he does on the dla form.

I also sat myself down with a cup of tea, away from all distractions - it took 3 hours to go through the form and write notes of what my answers would be. And then another 3 hours to fill it all in.

Best wishes

Cerebra or Contact a Family may have a local rep in your area who will come and help you fill in the form. they are experts and know just what to tell you to write. I've used both and found them very helpful, my son has HRC and HRM.