DLA

[DontYouLeaveMe]

I’m really not sure if I’m being unreasonable here so coming straight to the viper pit 😁
I've recently applied for DLA for my son. I say recently, 12 weeks ago. It’s taken 12 weeks and I finally got a response today saying my family don’t meet the criteria, and I’m so disappointed. DS has ADHD, global developmental delay, dyspraxia, and a sensory processing disorder. We are waiting for genetic testing for a muscle disorder and for a referral for an autism assessment.

DS is lovely, but he needs help with most aspects of daily life. He can’t dress himself, needs help with food as he can’t cut up meals and struggles with scooping. He can’t read or write, struggles to sit still in school and has daily extra help with the SENCO and headmaster. He does OT twice a week and has regular doctor, paediatrician etc meetings. I’ve had to go part time because I couldn’t keep taking time off work to deal with everything. I know that they don’t consider my financial situation when making a decision, but I really could have done with the extra support to pay for petrol, equipment etc. But they’ve turned me down. Is it worth appealing? Will they change their minds considering nothing about my situation has changed?
YABU- you don’t automatically get money, suck it up
YANBU- keep pushing, fight for the money

And definitely keep going

Get some help with an appeal if a mandatory reconsideration doesn5 work. My son gets middle rate care on what I think is a lot less than the issues you are describing.

Did you do it yourself with no help or guidance from anywhere else?

They almost always turn down 1st application surely you've seen in the news how many rejections are overturned on appeal?

Don't even attempt to do this yourself with no help from experts in the area. Get help from your local welfare rights advice dept within your local council I find them the best. Cab can be hit and miss, some of their advisors know their stuff but many ime don't.

You could also look at joining organisations who are charities specific to your sons condition/s they can often be very experienced in dealing with the very unfair system too

It's really hard to assess your son objectively yourself there will be loads you haven't thought to include or thought you weren't supposed to include this is very very common

I left out loads the 1st time I applied for anything like this.

These experts also know the key words and phrases the dwp like to see on such applications - nonsensical but unfortunately this is how it works

You haven't been silly you just didn't know which so so many don't I didn't know!

I hold 2 degrees inc a medical one and worked civil service myself and I messed mine up! A small local charity pointed me in direction of welfare rights. I'd taken a photocopy before handing it in thankfully and sent a copy of this to the advisor ahead of our appointment. As soon as I walked in her door she noticed like 3 things I'd left out! That was before I even sat down! Then we went through the form and she noticed a ton of other things I'd omitted and other things I hadn't expressed in the way they like them to be (yes it's ridiculous but this is how the system works)

Ever since in real life and on here and elsewhere online I always tell people don't even TRY and do it yourself you will come unstuck! Frankly I think they can easily spot the ones where people have had no help and mark them for rejection thinking they're a soft target with no support

Fight this! You and your son deserve better

Get as much support as you can

Good luck

DLA is like EHCP, in that it's all about evidence. A parent's word doesn't count for much by itself.

I sent in a copy of my child's EHCP when I applied, as it's a good one (I have a really good caseworker, and then we negotiated via mediation, using a fantastic direct access barrister, to get section F up to speed, too - the best caseworker's never allowed to do much with that, on money grounds, but the B, which is what DLA is based on, is always very good in this area, I think, as they are allowed to be blunt there and they really do read reports and reflect them well).

I then wrote that they had my permission at DWP to speak to the caseworker, too, on the issues within the EHCP. If your EHCP's good - and with NHS/LA funded OT twice a week, I am assuming it is if that funds it! - then it can provide really good evidence. It works as a sort of summary of all the reports and how they affect your child.

Agree you need help on how to complete it. Keep going - the money makes such a difference to my own children's lives (I have 2 with EHCPs).

you have to lodge a mandatory reconsideration request within 28 days of date on the decision letter. DO NOT miss this deadline. Even if all you do is write saying, please look at this again, make sure you do not miss the deadline. Try to get to Citizens advice, and have a look at their website on challenging.

Please don’t use fightback. They charge for their services, there are lots of other great free resources and groups online and on Facebook- just search for dla in groups there and one will come up with 60k plus members. If you don’t want to post just read the other posts and that will help you. Use the cerebra guide. You don’t need anyone to write the form for you, it’s better if you do it yourself - you know your child better than anyone.

Its also a myth they turn everyone down first time, they don’t. My son got high rate care at 2.5 years old without any diagnosis at all and having only been referred to a consultant and never actually having seen one: they based their award on the form I wrote myself. He’s now 9 and it’s been renewed twice since with no issues - he’s got autism and other related issues and attends complex needs school. He now has an ehcp but he didn’t when I first applied.

I’ve also applied for PIP for myself and had no issues getting this either - I have lupus and other conditions, I’ve been given highest rates on both elements as an ongoing award. I was given this without an assessment in person - they based it on the form I wrote and spoke to my rheumatologist.

So what I’m saying is don’t give up, don’t listen to the horror stories and keep fighting!

I would ask for a mandatory reconsideration asap and send extra evidence. If he has an EHCP etc then send a copy of that.

Defo get support from someone who knows what language to use in these forms. After 12 years I can word these forms fine now and I’m well versed in what they require, but if it’s your first application and you’ve done it alone, you probably haven’t said the key things that will help

That was a quick result - I put in for a change of circumstances at unfortunately, the same time as renewal.. last august. I am still waiting for an assessment!

Your application should state:

What dx, medication etc.
What the applicant cannot do - and link that back to the various issues for EACH question.

Assume that each question is a stand alone, that the person reading it has not read the previous questions and will forget the answer to this one immediately before they read the next.

So using me as an example for the moving around question:

Widdlin' cannot stand and move without her wheelchair without experiencing severe pain, debilitating breathlessness and falling. If Widdlin' attempts to stand or move she falls. This happens every time Widdlin' attempts to stand and move.

SO then when it comes to say personal care, bathing etc - I'd repeat that bit as well, I would not assume they have taken that part into account, they won't.

So I would have to explain that I can't get in the shower, as that would involve standing, which I can't do.

It's really bloody tedious.

Find the list of points and what criteria they're awarded for - remember that it is not sufficient for the person to do something - hell, I can haul my ass up the stairs - they have to be able to do something safely, without pain, in a reasonable time frame - I haul my ass up the stairs on my hands and knees twice a day (loo midday, bedtime), it isn't safe, I fall frequently and it hurts a shitload and takes ages. But im waiting on a DFG, and I won't shit in a bucket.

The point of that is - there are things you/the person involved may be forcing themselves to do now because there is no choice - that doesn't mean its acceptable, it doesn't mean they're actually capable and could be considered able to do a thing the same way a non-disabled person can.

Once you've got the list of points the report you have can be used to pick out whats wrong, what they've missed or misunderstood - and formulate your written MR (never do that over the phone, submit it in writing!).

That way you can hit the specific key points/terms they want to see for the applicant to meet that criteria.

You don't say the age of your son - it is possible they're deeming the level of care he requires to be similar to the level of care a non-disabled child would require, so really spell out HOW it is different.

I would have thought that would have been enough to get at least lower rate care, did they put reasons why you were turned down? For the lowest rate you only have to prove they need an hour a day more care than a typical child their age. School stuff helps support as if they have a lot of support at school, for example a 1-1 then it’s evidence they are also likely to be needing support out of school. You’ve not put child’s age but the younger the child it is often harder to get as all young children need a lot of care so you are having to prove your child needs more than a typical child of that age

Not silly just naïve. The way to think of it is this, the person making the decision will never meet you or your child therefore the only thing the decision maker will have to go on is what you write in the form and the evidence to support this.

Anyone can send a form in with a list of diagnosis but that does not describe the child's needs and every child is different. Think of it like writing a guide for someone who is going to spend time with your child, if someone who didn't know you looked at your form would they see how much extra care your child has or their extra need? If the answer is no then neither will the decision maker.

Ask for a reconsideration write that you genuinely thought the diagnosis would be enough and then explain to them all of the help your child needs, right throughout the day and night if applicable. Put in all of the help he needs with learning and communication, all of the help he needs in school, extra learning, keeping him safe, interaction with peers. All of the help he needs with understanding things around him, any sensory needs, coping with meltdowns, frustration, aggression. All the help he needs with sleeping, settling, soothing, eating, drinking, dressing, bathing, playing etc.

It's quite difficult when it is part of your daily routine to actually realise how much extra care that you give. You will get this, you just need to spell it out, even if you have to go through the whole form again. Do not let them persuade you to start in a new claim or you will lose money.

Appeal, speak to welfare rights at your council for help if you have to go to tribunal. Get professional reports to back you up. Also statements from people who know him, e.g. teachers, SENCO, club leaders etc. Carers trust will help you fill in any forms (including DLA form).

Thanks everyone. I’ve been Googling all morning and going to get on the phone once my youngest goes down for a nap!

My friends son was refused DLA and she went straight to appeal she got the help completing the form again from CAB who put her in contact with a benefits advisor who knew all the "buzz" words when completing the forms the appeal was granted and she received all back dated funds she was entitled to so well worth getting help with this good luck to you.

Definitely use the Cerebra form and resubmit / appeal. You have to jump through the right hoops.

Its not true people always get refused. My dd just got it first time after a 12 week wait.

Anyway op you need to

1. Use the cabera or whatever its called guide.
2. Ask for help from carers resource, or other similar service.
3. Add every little shred of evidence you have. Hospital letters, diagnosis reports, get ot to write a statement, school reports, appointment cards. Literally anything you have about his needs.
4. Write every detail explaining why his care goes above what would be expected. Use his worst day and go through it hour by hour. Eg, Joe cannot dress himself because of his fine motor delay and therefore requires carer to dress him, which is not in line with children of 6, Joe cannot choose weather appropriate clothing and would wear a jumper in the height of summer or slippers outside without strict carer input, which is not typical of a child his age.
5. When talking about care fir example bathing, calculate how long you would have to prompt, reason, bribe him in, add the actual washing and how long you have to ask him and then getting out and so on. So you may think well he's in the bath for 15 minutes but by the time you have added all the above its more like 40.
6. Detach emotionally from the form. I hated it because I felt like I was describing a difficult child who had all these awful problems and was a strain on my life. Well obviously I love my child and I love caring for her but its not about that these people don't know you and him and you just have to remind yourself they are still your sweet dc and hopefully this money will help them.

Good luck.

You’ve got some great advice here already OP. Do definitely appeal. I gather that the cerebra guide is excellent.

You need to send in as much evidence as you have in your possession - medical reports, EHCP, letters from GP etc. DS has been in receipt of DLA since he was 6. He’s recently turned 16 so we had to apply for PIP instead. His PIP decision took 20 weeks and they accused me of causing the delay myself by “sending too much evidence”. 😄 How can too much evidence even be a thing?! However our ‘too much evidence’ got him enhanced level everything, even if it was most inconvenient for the team at DWP to have to sift through it all! 🙄

I apologise if I’ve misinterpreted a phrase in your first post, but you stated you were told that “my family don’t meet the criteria”. I wonder if you therefore referred to your family’s overall circumstances and financial need on the form more than your son’s own needs? The form should be filled in with everything you can think of that your son can’t do, that another child his age can do, and what you have to do for him because he is unable. It should be all about him and why he needs a DLA award.

Good luck - do definitely appeal. I find when I’m doing one of these forms that it’s a good idea to have a very large glass of wine nearby for when I’ve finished!

I'm on various facebook groups for DLA and apparently the decision makers only get twenty minutes/claim to decide if someone is eligible and what rates
I'm not sure that you have to send every piece of evidence ,but the most relevant, sometimes it's a about the quality of evidence
My son has severe autism and learning disabilities and goes to a special school, I have tons of evidence as we have so many people involved
He was awarded again last week for HRC and HRM under SMI rules for five years which will take us until we claim for pip
I only sent the most relevant documents including his EHCP.

Thanks for the help. I did a lot of searching and used the Cerebra guidelines and then called up. She read through the report they’d made and they’d missed half his issues off. So I made them very, very clear. I included all the information that’s been suggested. I’ve also arranged to send in the latest education report thing, and the most recent paediatrician report and she said it’s gone to mandatory reconsideration and she said I’d hear back within four weeks. So fingers crossed and if that doesn’t work then I’ll use the other agencies to help

It’s not what your son has got but how it affects him and what help he needs.
www.benefitsandwork.co.uk have excellent guides on how to fill in forms.
mid def ask for a mandatory reconsideration and if that is a no, then appeal.

Just wanted to say thank you everyone for the help! Got a letter today saying I’d been awarded the medium amount and back pay from when I applied in March! Not telling a lie, that money is going to save my ass right now! Thank you so much everyone!!!

Great news you now need to apply for the connected benefits are you on UC or tax credits, get advice either way you have to act quick to get backdate.

Great news. I am pleased for you x

Hi guys need abit of advise , my son has just been awarded mid rate care , I want a reconsideration as the only reason he wasn’t awarded the high rate is due to his nighttime , they have told me a child of his age (3) needs comfort at night time , but my son doesn’t just need comfort he climbs in his window and jumps down he has no broke his bed due to jumping on it for hours on end , he will take his mattress oh his bed and completely trash it when he has meltdowns at 1am. He will do a toilet in his nappy and put it in his mouth so it’s more than just going to comfort him it’s constant checking for his safety? How would I word all of this ?

Yes keep going