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Here are some suggested organisations that offer expert advice on special needs.

DLA and eligibility
22

FrankDarko · 06/06/2021 09:14

I have a 12 year old with autism, and have been putting off applying for DLA for a while now. He was officially diagnosed last year, although has been treated throughout his primary schooling as though he had been already.

I've had a few people mention to me that I ought to apply, and I really didn't think we would be eligible. However now I'm wondering if we would, as it's been bought up a few times now.

Could anyone advise me on this at all please?

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Bennyboy94 · 23/05/2022 18:18

Hi just looking for abit of advice on whether I will get awarded DLA for my daughter?..I got the letter that they received it on the 1st of April but have not heard anything else since. I also put the ECHP form in too as she gets one to one in school. She is currently getting diagnosed with ADHD an ASD. Any advice appreciated thanks

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danni0509 · 28/09/2021 08:36

Nice update @FrankDarko Flowers

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FrankDarko · 28/09/2021 07:42

I just wanted to say a thank you to you all.

Our claim got awarded, and backdated to when I called up for the forms.

So very please Smile it's going to make all the difference.

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Borka · 16/06/2021 16:10

Some really useful advice I was given was to not feel you have to fill it out all in one go - I did it in half-hour chunks, which made it seem more manageable.

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FrankDarko · 16/06/2021 14:08

Forms arrived today - very overwhelming. It's so very long.

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10brokengreenbottles · 08/06/2021 12:28

We get DLA for 3 DS', and it just goes in to the general pot. We spend way more on their needs than the amount from DLA.

Higher gas, water, electric bills.
Extortionate food bills.
Driving places we would otherwise walk and parking costs.
Numerous clubs to help with physio, fitness, socialising.
Buying equipment.
Me not being able to work.
Independent assessments and private therapy.
The list is endless.

As evidence we have sent EHCPs, clinic letters, discharge letters, school paperwork.

Does DS attend any HE clubs? If so, could you ask one of the leaders for a supporting statement.

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Toomanyminifigs · 07/06/2021 16:36

To be honest, it was so long ago since I first applied, I can’t remember what they asked me on the phone. I don’t think it was too many questions. Maybe my NI number? Getting the form is a very simple process - but mind, you have a limited time to get it back by in order that your claim (if successful) can be backdated from the date you apply.

In terms of ‘evidence’ - I would send in everything you have. Has your DS ever been seen by an OT? SALT? EP? I would also send in a copy of his diagnosis report. Your anecdotal evidence also counts as evidence too.

I treat the form like a college project. I go through all my DS’s most recent reports and put Post Its on the pages I feel are relevant so I can quote from them - eg a question on the form might be:
‘Does your DC use any aids?’ I write: DS has been diagnosed with hypermobility (see page X of OT report dated XX). The OT has recommended that he use specially adapted cutlery as it causes him pain in his fingers when pressing down on a knife.

In terms of what to spend DLA on - it’s so personal. Some people I know use it to help them replace things that DC have destroyed in meltdowns - iPad/TV etc.

I used some to pay for my DC to attend special swimming lessons - it took him three years of classes to learn to swim.
My DC has terrible phobias of bees and dogs (thinks they’re going to ‘kill him’) so I’m looking for a therapist to help him with that.
He still can’t manage zips and buttons at 11 so I have to buy him adapted trousers and also velcro shoes. It goes on! I don’t think the DWP ever ‘check’ on what you’re spending it on. I have heard though that the money needs to be spent rather than saved up for your DC as that can go against the argument that it’s needed for day to day living costs, if you see what I mean.

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FrankDarko · 07/06/2021 10:13

@Toomanyminifigs - that's really helpful.

What kind of things do I need for evidence?

How do those of you who receive it, allocate it? What kind of things are out there to help DS?

I will be calling today to request a form, do they ask a lot of questions?

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10brokengreenbottles · 06/06/2021 14:22

The guide is updated when the form changes or when case law alters the advice they give.

By the time you have called for and received the form I would have thought it should be updated, although can't be certain. If you phone for the form the claim is backdated to the date you called, whereas if you download the online form it is the date DWP receive it. You can still type your answers if you prefer.

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FrankDarko · 06/06/2021 13:22

@10brokengreenbottles Thanks for the link. Are the guide updates usually to do with a change in the DLA forms?

Does anyone know how long the updates take?

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Toomanyminifigs · 06/06/2021 12:01

DLA isn't awarded on a diagnosis but how a DC's difficulties impacts on their (and your) day to day life. My DS was awarded DLA years before he got his ASD diagnosis as I was able to demonstrate how much more supervision and support he needed than a neurotypical child of his age.

Some people find it helpful to send in a daily/weekly diary - this can really illustrate how much more time/input is needed. In my case an eg would be - 7.30am. Parent has to clean DS's teeth. This process takes 20 mins as DS has sensory issues around things in his mouth. Parent has to put toothpaste on toothbrush, coax DS into opening mouth. We have to stop halfway through to give DS a break and due to gagging reflex.
A NT child of 11 would be expected to be able to clean their teeth independently with minimal supervision.

That kind of thing.

Being awarded DLA can be life-changing for some families. If you're on benefits then you are exempt from the benefits cap. The benefit isn't means tested so it doesn't matter what the family's income or savings are. If you're awarded middle or higher rate then you may be eligible for carer's allowance too.
Plus it can be spent on anything - therapies for the DC, activities they enjoy - or it can even go towards paying bills/rent etc.

I recommend everyone with a child with additional needs applies for it - they are entitled to it.

The form is hard to fill in though: both in terms of evidence-gathering and also psychologically. It can be painful to write down just how difficult some aspects of life are for my DS. I tend to do my renewal form over several days to give myself a break. Remember to take a photocopy/photo of every page before sending it off in case you need to appeal or to make the renewal process easier.

Good luck!

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10brokengreenbottles · 06/06/2021 11:57

I agree with using the Cerebra guide. There's an older version here, but as long as it isn't going to be too long I would wait for the updated guide for completing the form.

Does DS have an EHCP? If not you should apply. If he does why are you EHE? If there are no suitable schools an EOTAS package is possible.

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FrankDarko · 06/06/2021 11:30

@Sirzy - I have tried to download the guide, however it says they are updating, and it won't go through when I try and have it sent to my email.
Is there another way to download?

I'm using it here

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Sirzy · 06/06/2021 11:22

Look at the cerebra guide for DLA for help filling in the form

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FrankDarko · 06/06/2021 11:20

Most typically developing 12 year olds walk to school alone / go out with friends / have a door key / mobile phone / have a bit more independence

We've recently bought him a phone, and he has taken a few walks in our local area with his friend. That's about as far it goes there though. Independence is tricky.

Yes, I agree that the gap with his peers becomes more obvious as he gets older. He plays with his teddies still, and likes sitting in his dens writing. He's happy drawing pictures and crafting etc.
Same in other ways, like an intense love for gaming.

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danni0509 · 06/06/2021 11:16

In that case i would definitely apply for him Flowers

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FrankDarko · 06/06/2021 11:13

he's currently home educated due to not unsuitable schooling options for his needs.

Ignore the not here

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FrankDarko · 06/06/2021 11:12

Do you still have to take him to school? Run his bath? Assist him to the shower? Help him to dress / remind him? Does he have sleep problems? Take any medication? Mobility issues? Does he need supervising?

He's currently home educated due to not unsuitable schooling options for his needs.
Yes, I run his baths, and need to help wash his hair.
If he showers, we need to do it with him.
I have to remind to to get dressed, and often help him choose suitable clothing.
He needs low lighting, and some time to decompress at bedtimes. He usually plays Jenga or cards alone in his room.
He doesn't have any medication, although does have a heart condition, and also are waiting still for a specialist to see him re incontinence issues.
He is mobile, and perfectly capable of getting around. He can't do things like ride a bike though.
In general, he needs supervising.

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danni0509 · 06/06/2021 11:00

12 is a fairly easier age to show the differences.

Most typically developing 12 year olds walk to school alone / go out with friends / have a door key / mobile phone / have a bit more independence

It’s harder to prove when younger as most younger children need lots of support / supervision so what I mean is the older they get the easier it is to argue your case.

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danni0509 · 06/06/2021 10:56

@FrankDarko it’s how much support he requires more than what would be required of a typically developing child of the same age.

So what do you do for him that a normal 12 year old could do for themselves type of thing.

Think of everything.

So what support does he receive at school, support at home, support out of the house.

Do you still have to take him to school? Run his bath? Assist him to the shower? Help him to dress / remind him? Does he have sleep problems? Take any medication? Mobility issues? Does he need supervising?

Use cerebra guide to help you fill in the form, be as thorough as possible and send in as much evidence as you can (hospital letters / ehcp if he has one / letter of support from school)

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FrankDarko · 06/06/2021 10:39

Thank you, that helps.

I think I'm just not sure as I don't know what it is exactly that will make us eligible for DLA, if that makes sense?

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Dabbo103 · 06/06/2021 10:32

Hi,
I'd definitely apply if I was you and you are eligible to.
Autism is challenging for both your child and yourself. DLA is there to assist your child with anything he needs and for yourself as you're caring for them and dealing with any stress associated with this.
I have a 6 year old who gets high rate care from DLA (currently waiting on his renewal). He hasn't officially been diagnosed yet but he's suspected to have ADHD and Autism and is getting his EHCP in a couple of weeks.
I applied for DLA when he was 4 and like you, I didn't think I'd get anything. However, when I did, I knew I was entitled to get it for him as it's hardwork despite loving him to bits. It's made a world of difference to us as a family.
I hope this helps!

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