Confused by DLA... Help!

[Honeymonster2]

Im a bit lost, I've been advised to apply for DLA for my son who has just been been put on the waiting list for an assessment with CAMHS for ADHD. He's a lot of work, always has been, even compared to his younger siblings, so checking through the form, I have something to write in almost every box.

My problem is, what evidence can I send?? He's not diagnosed yet, so no one is officially involved with him when it comes to behaviour or additional needs. His teacher has written a very small note on it saying he doesn't follow instructions, won't share with friends and doesn't listen very well... Im hoping to get statements from his previous nurserys (which isn't looking hopeful, because they're useless)

Im in a panic that I won't be awarded because I didn't kick up a fuss about him earlier. Every post i find through google says their children already have ECHP, Paed consultants etc... how? My son is only 5, so there hasn't been any push from his nurserys for this, I would just get a 'Son has been naughty again today' at the end of each pick up time.

Feeling like I've let him down...

Does anyone have any advice on what I could do or send with my application with so little evidence? Or am i hoping for a miracle?

Thanks so much

My son was awarded high rate care before he had an ehcp. He was 2.5 and had only been referred to a paediatrician by the GP (he wasn’t diagnosed with autism until 4) so he had no diagnosis at all. I didn’t even have anyone to fill in the section for someone who knows the child! Just fill the form in as best you can (google the cerebra dla guide; that’s helpful) and send it in. The worst that happens they say no and you can appeal but lots (like us) do get awarded first time with not much evidence and no hassle.

Have you got a copy of the letter referring him to CAMHS? That would be a big help.

And it's not compulsory to send in evidence, it's perfectly possible to get it without.

The DLA form nearly broke me! I'm the end I made an appointment with a local community centre who have people to help, their actual job is helping people full in benefits and other official forms.
Maybe see if anywhere local to you offers a similar thing, and get their advice. They know all the key words and phrases to write, and also help with an appeal if necessary.

Do you have any relatives or friends that look after him that could so a statement for you? The best thing you can get is a comprehensive statement showing what extra work is required in looking after him.

My best advice is write as much as you possibly can and attach extra pages where there isn't enough room to write what you need. Get your application in as soon as you can and don't be afraid to appeal if you don't agree. Cerebra guide is very helpful.

cerebra.org.uk/download/disability-living-allowance-dla-guide/

Written evidence does really help but if there isn't any then you can't send any. If you do get turned down, appeal and go to tribunal as they will ask questions and listen to the answers and award based on that.

Check whether your local borough has a service to help you fill in the form. Ours does, it’s called Portage, and I was guided during a 2h phone call on what to enter into each section and what evidence I could offer. It was v helpful. We do not have an EHCP yet either (daughter is 2yo). Good luck. You have not let him down.

I second using the Cerebra guide and sending a copy of the referral to CAMHS, if you haven’t got one you can ask for a copy.

Does he have an IEP (or similar but using another name) at school? Do you have any emails from school?

I was going to suggest the cerebra guide too.

The key is showing he needs care above the rate his peers do.

See of the CAB will help you complete the forms. Does he have a one plan or pcp at school? If he does, send a copy, of he doesn't then speak to your schools senco, the plan would outline his issues and the support in place for him.
I have heard plenty of people being awarded with very little evidence. If he doesn't get it first try then do a mandatory reconsideration, if he still isn't awarded then take it to tribunal

Before you start write down exactly what you have tondo for him in a day. If he has good days and bad aim to do this on a bad day - it helps.

I got dla for my dd aged about 7 - she wasn't diagnosed with anything until she was 12+

A copy of the referral letter to camhs would be good to include. You can request a copy if you don’t have one already, but don’t hold up your dla application waiting for it, but if you get an unfavourable response you can request an immediate reconsideration and provide the letter then. Also if you have any health visitor parking involvement they might provide something? You could also ask the sendco at the nursery and the current school for short statements but again don’t wait to submit the application.

I know it’s a horrible process

I know the school only added a small note. But its at least a professional note saying he has difficulty with theses things.

One thing I was advised was when you fill in the form try and use the words can't rather than won't. If he has trouble sleeping for example don't put he sleeps for xx hours a night. Instead put he's awake xx hours during the night. Don't hold back on anything.

Thanks so much everyone! his Grandma has him once a week, should i ask her for a statement? I assumed because she's a family member they wont care?

I will try and get an appointment with someone to guide me through it, I've used the cerebra guide so far, but it still doesn't feel enough. I might go through it again and add extra sheets for each question.

He doesn't have anything official in place at school yet, I suspect because he's meeting targets academically they're not over pushed to put something in place. Im worried for when his lack of interest will take over his natural abilities to absorb information. Like I say, he's only 5, so a lot of the day is still play based. I dread to think how much he's going to hate it as he gets older! Sitting down and listening has never been a skill of his bless him

@Cookiecrumble22

I know the school only added a small note. But its at least a professional note saying he has difficulty with theses things.

One thing I was advised was when you fill in the form try and use the words can't rather than won't. If he has trouble sleeping for example don't put he sleeps for xx hours a night. Instead put he's awake xx hours during the night. Don't hold back on anything.

This is smart. I will go back and comb through my answers. Its so overwhelming! I wish I hadn't written on it now, because I feel like I need to start again!

I agree with not using the word "won't" and also don't use " refuses". Keep away from words that can imply behaviour is chosen behaviour.

I only sent a letter from the paediatrician and my son was awarded, he isn’t diagnosed and they even awarded him again on renewal even though he still isn’t diagnosed, he was awarded 2 years both times. I used the same letter on renewal. Didn’t think he would be awarded again as the letter was 2 years old but he still was

Loads of helpful advice here
contact.org.uk/help-for-families/information-advice-services/benefits-financial-help/benefits-and-tax-credits/disability-living-allowance/tips-on-completing-the-dla-form/

@Honeymonster2

Thanks so much everyone! his Grandma has him once a week, should i ask her for a statement? I assumed because she's a family member they wont care?

I will try and get an appointment with someone to guide me through it, I've used the cerebra guide so far, but it still doesn't feel enough. I might go through it again and add extra sheets for each question.

He doesn't have anything official in place at school yet, I suspect because he's meeting targets academically they're not over pushed to put something in place. Im worried for when his lack of interest will take over his natural abilities to absorb information. Like I say, he's only 5, so a lot of the day is still play based. I dread to think how much he's going to hate it as he gets older! Sitting down and listening has never been a skill of his bless him

Yes his grandma can do it . When I did not have much my oldest daughter did mine for me.

Do you have any reports or notes from when he was a bit younger maybe from health visitor?

My ds was only 2 when he was awarded dla. We were waiting an autism diagnosis but applied for the dla early so the preschool could access extra funding for 1-1. The only evidence we had was a letter from the paediatrician stating he had been referred for Assesment.

@Sleepyblueocean

I agree with not using the word "won't" and also don't use " refuses". Keep away from words that can imply behaviour is chosen behaviour.

would i just say can't instead on those instances? Because im pretty sure ive used refuses a few times :/

@YouCantBeSadHoldingACupcake

My ds was only 2 when he was awarded dla. We were waiting an autism diagnosis but applied for the dla early so the preschool could access extra funding for 1-1. The only evidence we had was a letter from the paediatrician stating he had been referred for Assesment.

this is really helpful, it gives me hope!

@Cookiecrumble22 no, nothing! I mentioned it to a couple different health visitors and said because he was engaging with them, they saw nothing wrong!