Should I apply for child DLA?

[CockADoodleDuuuhhh]

DS8 is on the waiting list for an ASD assessment; he has an elder brother diagnosed with ASD.

We’re in the very very early stages and haven’t had the initial appointment yet. He currently has no diagnosis and the only evidence I have is letters advising he’s been accepted on to the waiting list. However, I know that you can claim DLA with no diagnosis as it depends on the care the child needs.

I was wondering if I could apply for it at this point? I would intend to use the money to fund an activity for him to help keep him focused and to also save for a private assessment for him (wait times in our area are horrendous).

What would happen if I successfully applied but then he got no diagnosis? Would I have to pay it all back?

DLA is not diagnosis dependent, it's needs dependent - your child's needs vs a typical child of their age. It's awarded based on the needs which don't change if/when a diagnosis is received.

But you must know that if you've already got a child with an ASD DX who I assume you're claiming DLA for?

Absolutely you can apply now. I applied for my DD, and was approved, before she got diagnosed with autism.

If you are successful with your DLA application, but don't get a diagnosis, then no, you won't need to pay it back. As you say, DLA is needs based, rather than diagnosis based.

If you haven't come across it already, the Cerebra DLA guide is invaluable.

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

Oh! Just realised that the older brother may not be your child so you may not have had this joy before.

Have a look at the cerebra website. They produce a helpful guide. Warning - it takes a lot longer than you think and it's quite upsetting to do

Definitely apply for t, include all the evidence you have about his current issues including the fact he's waiting for an ASD assessment. It's not diagnosis driven but based upon the child's additional needs. If they award it then they will do so based upon your current information so you won't have to lay anything back if there's still no diagnosis .

Thanks everyone; I’m going to apply. I think he would only qualify for lower rate but everything helps and it would cover the cost of the activity I want him to do .

You dont need a diagnosis, but you do need evidence, of what extra care your son needs, so does he get help in school, does he have an EHCP, etc what does the Senco, say .

@x2boys I have no professional evidence at the moment other than the GP referral and acceptance on to the waiting list. This is why I’m not sure if it’s the right time to apply.

His school are no help as DS is fine in school and his behaviours are very subtle (until they’re not!) . Eldest DS goes to the same school and even after diagnosis they could not “see” his autism even though it was very very obvious to everyone else.

Obviously only can decide wether to apply or not,
But ime the more professional evidence you have regarding the extra care your son requires, the more likely the claim is, to be accepted, i think if it was me i would spend some time gathering evidence to substantiate the claim as it would give you a greater chance of being successful, but good luck in whatever you decide.

@x2boys yes my worry is that it would be “my word” which isn’t really enough for a claim. Unfortunately as DS has gone straight on to an assessment waiting list, I’m very unlikely to get professional reports until he is first seen or diagnosed which it likely to be a very long time away yet.

I was hoping to use the money to fund a private assessment for him; I guess if I applied and it’s rejected then at least I know I tried .

Does he need extra care? Then claim. Diagnosis is irrelevant x

@FedNlanders yes he does , mainly in the form of constant prompting to do basic tasks, constant reminding about behaviour (not to throw stones , not to be too rough , to act appropriately when out about, to not interrupt others constantly, to go out etc). I just feel a bit of a fraud as it’s so very early in the process … he might not even have ASD

You used to be able to work with advocacy charities to do the claim. But essentially you have to be able to prove that the child needs 'extra' - for us, that was around hygiene, supervision, support to interact with others, etc. So it can just be 'home' stuff. But that was a while ago, we had a dx and I'm sure things have got tougher since then.

Have to say, without the advocate I would have really struggled to fill the form in as DS was an only child and therefore I didn't really have an idea of what 'normal' was.

@NoYOUbekind I am also unsure what “normal” is …

Is it normal to have to tell an 8 year old not to throw stones at his brother?

Is it normal to have to tell an 8year old not to interrupt their friend talking about their new puppy - to talk about himself?

Is it normal to have to repeatedly tell an 8 year old not to touch things in the shop, not to play fight in a shop . Repeatedly ?!

Is it normal to have to tell an 8year old that he doesn’t need to cry over being asked to sit next to his brother ?

I really have no idea

Those are just some examples. DS has me frazzled this summer . He just can not seem to listen or follow basic instructions without me having to CONSTANTLY be on his case.

[quote CockADoodleDuuuhhh]@NoYOUbekind I am also unsure what “normal” is …

Is it normal to have to tell an 8 year old not to throw stones at his brother?

Is it normal to have to tell an 8year old not to interrupt their friend talking about their new puppy - to talk about himself?

Is it normal to have to repeatedly tell an 8 year old not to touch things in the shop, not to play fight in a shop . Repeatedly ?!

Is it normal to have to tell an 8year old that he doesn’t need to cry over being asked to sit next to his brother ?

I really have no idea [/quote]
Well what I would say is it's not 'normal' for an 8 yo to require constant supervision so they don't hurt themselves or others. That's 'extra care' - you would expect an 8 yo to be able to navigate a shop, for example, without touching things. You would expect an 8 yo to not throw stones (or to stop throwing stones after being told not to). So yeah - the issue is he can't be unsupervised at an age-appropriate leve, and the evidence is the examples you've listed. But when that's your life, it feels entirely normal right?

Dla received my claim on 3rd of June was told on Wednesday dm had requested more information from school my daughter only started that school last year and with Covid was basically never there the teachers don’t no her so really thinking my claim is going to be rejected has anyone ever had this before

I applied for my son who wasn’t diagnosed but we did have lots of evidence with no evidence at all it will be hard, ask the school?

Applied for child dla awaiting paediatric assement autism advisory assement for school they have information from the school gp and the condors assement thats been done so has anyone been successful hes 14 outbursts anxiety social anxiety school refusal won't speak to anyone he doesent know without me being there countdown for TV screen time going out glazes over when you speak to him can't take things in no patience at all he has to have my full attention all the time he doesent sleep about to start medication to help with this have to be up with him until the early hours when he goes to sleep he still wakes up can't settle wakes me up . Has anyone been successful.

@x2boys You dont need a diagnosis, but you do need evidence, of what extra care your son needs, so does he get help in school, does he have an EHCP, etc what does the Senco, say you don’t need any of those things although they can be helpful, the form and a diagnosis or suspected diagnosis/ pathway letter etc are enough.

You don’t need a diagnosis and you won’t have to pay it back but there is a section for a professional that is involved to fill in so you’ll need someone to back you up.

Echp is being considered senco beginning her assement . I have his school and gp to back me up .

You don't need a diagnosis, but you would likely need some sort of paper documentation of proof that he does have these issues, such as something from the school SENCO confirming what you put or from the person who referred him. There is a section on a DLA form that they can get someone who knows him to fill out.

I haven't had a rejection letter which I thought I might so far hes started promethazine for sleep from the gp and his on waiting list for the peadatrition .

Part of me thought to wait to apply however his needs are so high I wanted to apply for him so I can pay for the therapy he needs and to pay for him to be able to do more things outside of the house. final decision I've been told end of October I will send any additional information that I can get in between also ringing gp in the morning for a note to say ben has started promethazine for sleep.

It’s worth applying while you’re waiting for assessment. The Cerebra guide is excellent- it gives examples of additional care needed and tells you how to word things. It helped me realise just how much care my DD needed - it’s hard to tell because it becomes part of your routine and you don’t realise other parents don’t need to provide so much supervision and support.

One thing to remember is to fill it out based on him at his worst. So if every thing that he needed help with happened on the same day, what would that look like. It terms of support, your GP may help with that given he’s been referred?