Nervous and unsure about DLA application

[Timewaitsfornobody]

I have been asked to claim DLA for my child. He is only 2 years old and doesn’t have a diagnosis yet. The therapist at the child development unit said I should apply so my son can get 15 funded nursery hours which might help him and will give me a break. I didn’t even know you could get 15 hours nursery if the child gets DLA. My son doesn’t sleep well, he averages 3 hours awake each night in the middle of the night and the development unit says he has sensory issues and communication delays / differences. The therapist wants me to apply straight away and wrote out the relevant page for ‘evidence from a professional’ whilst we were at the appointment so I can submit it with the claim form.
My son is hard work. Much more so than other two year olds (he isn’t my first child and he is nothing like any other two year olds I know). But all 2 year olds need a lot of help and supervision.
Is it worth me applying for DLA? I don’t want to spend several days filling the form in and destroying myself in the process if it is likely to be refused but I really could do with the nursery hours and I cannot afford to pay for any nursery myself as I am currently not working and we are surviving on one wage.
Does anybody get DLA for a 2 year old who doesn’t yet have a diagnosis?

Our son got DLA from three months old! So yes, people do claim DLA for very young children - it's to cover the increase in care costs which, by the sound of your situation, you do have to care for your child more than the average.

There is nothing to be lost by applying. With sensory and communication issues, the leaning is towards possible autism [NOTE I am not making a diagnosis, it's merely a possibility] and therefore the best guidance I would suggest you read is produced by Cerebra: www.cerebra.org.uk/help-and-information/guides-for-parents/dla-guide/

Thank you @Eggysmom.
My son is on the waiting list for an autism assessment. They have said he has significant markers for possible autism but is too young for assessment and diagnosis so they will assess sometime after the age of 3. Thank you for that link, I will have a read before I think about filling in any forms. I suppose I know that my son has significantly more needs than his peers but it seems like it would be difficult to evidence at this age.

I was told to apply and didn’t, and left it and just going through the process now: although I’ve left it a bit late so will probably miss out on his free hours for the first time, hopefully it will be sorted for the January term.

You don’t really need evidence as such, you just have to explain what you do and the form takes you through it. The Cerebra guide is very good. Evidence can help, but you have to remember that loads of people applying have no evidence or diagnosis so they are used to it.

I don’t think you will be losing anything to fill it in.

Thanks Elyely , I have asked my husband to print the forms at work so I will have a look at them tonight.

If you call the DLA phone line and ask them to post it to you then any payment they make will be backdated to today’s date (if you return it in time). Just make sure you photocopy it, and any letters you do send in, and send it recorded delivery. Apparently they get “lost” quite often...

Thank you. I phoned them for a form. I had a look at the one my husband printed yesterday and it certainly isn’t but an easy form to complete. I know they need a lot of information in order to make the decisions but this form seems designed to make people give up applying before they have even started. I’m determined to apply now though because I really think both me and my son would benefit from the funded nursery hours.

Can I suggest you phone the Disability Infomation Advice Line (DIAL) - you can Google the number (they should have a local office). I would definitely apply for DLA (we applied at 3 months). However I wouldn't complete the form without getting some advice first. DIAL will advise you. When I first applied I was very stressed with a very poorly baby - a volunteer came to the house filled out the form with me. Keep a copy of the completed form - should you need to appeal and also to use as a basis for subsequent claims.

I stayed up most of the night and filled the form in after reading the cerebra guide, I felt I needed to get it done straight away otherwise I will change my mind and not get it done at all.
I went to the post office this morning and copied it before posting it off.
Just a long wait now I assume.

You usually hear within 5 weeks. You might be successful first time, they might ask for extra information. I can understand you want to get it done but do ask for advice from a service who really understand the process - it can really make a difference to the ease of the application and how much funding you get.

Hi all i applied 4 weeks ago got a text to say they are dealing with it. The problem is i have no evidence at all apart from everything i have said about my daughter who is 4. The doctor didn't bother when i told them i know shes autistic he said he can't refer until shes at school but im home educating as she has no school this September. I have serious problems with her behaviour, being dangerous, meltdowns, not able to communicate with other people and children, today she wiped poo all over her little brother the carpets and our cat. Took me 2 hours to clean ive only just sat down and shes awake again screaming. She can't share a room with her brother im in a 2 bed im just so tired all the time. I really really need this bit of help so i can get her into some activities im so anxious i dont want to get rejected.

How long after sending the form in did you get the text message natwild?
I haven’t heard anything yet. I don’t expect a decision for a while but thought they might have acknowledged receipt of the form.
Like you, my children should be sharing a room but hey can’t because the two year old doesn’t sleep and is up and out of bed so much of the night. He currently sleeps in his own bed but in the bedroom with me and my husband, but half of most nights is spent with me sitting downstairs on the couch with him (I’m sitting, he is climbing and running around and I’m constantly having to get him down from unsafe places).
Did you give the doctors details so they can contact him to confirm what you have written on the form?

Hi timewaitsfornobody i sent form on 23july got a text on 8th august then a letter saying they are dealing with my claim also dated 8th. I thought oh no its a rejection letter. As for the doctor i did give consent but not sure if the doctor will back up what ive said because they said we will write your concerns into her notes until she starts school so dont really have no evidence but fingers crossed.

That is pretty rubbish of the doctor natwild
Is there anyone else you could ask to support your claim if it gets rejected and you need to ask for a reconsideration? Would the health visitor help even if you are no longer technically under a health visitor as they might remember you?

And my little boy isn’t at nursery yet either. He is just at home with me. But wary intervention is really important for children with autism or sensory disorders so if you are worried it might be worth asking to see a different doctor for another opinion.

^^early intervention, not wary.

No as im new to the area i live in a village where noone knows me i dont have family support either i just feel stuck. Im on the waiting list to move back to my hometown but im not a priority. I spoke to cahms and this is what they said

Cahms basically said they will not speak to me until she is in school so im stuck i feel like ive had the door shut in my face

I don't know many who get it aged 2. Not sure of you know how DLA works - you basically need to demonstrate that your child requires significantly more help, support and supervision in comparison to a typical child.

Here is the snag:it is totally normal for a 2 year old to e.g. not talk much, to be in nappies, to have no sense of danger and therefore requiring constant supervision, to need help with eating, wakes at night etc.

Unless you DC has also health needs which require a lot of input (e.g. you doing physio, tub fed, lots of medication etc), I think you will struggle.

Have a look at the cerebra guide - it may give you some pointers and just give it a go (appeal if need be). If you don't try, you won't get. If difficulties persist, it will get easier later to get DLA, as the gap between a delayed child and a typical one usually widens but demonstrating that a 2 year old needs more care than a typical is usually challenging.

we often waited 8-9 weeks to find out if we were awarded. Then mandatory reconsideration another 10 weeks and then appeal (which was another 3 months wait). DLA isn't a quick process esp if you go down the appeal route.

Good luck and done on doing the forms so quickly (took me 3 months on typing 30 pages down).

That’s what I think badcop, that it is difficult to demonstrate extra care needs for two year olds unless the disability is a physical one.
If it wasn’t for needing the nursery funding I wouldn’t have bothered applying but I am getting so little sleep that I really could use the nursery hours and feel my little boy would benefit from the social interaction. I had to stop taking him to toddler groups because he continually ran around trampling the babies and climbing on dangerous things and people were describing him as a menace and a real handful.
An example of his sleep issues - I have been awake with him and sitting downstairs since 12.30 last night and it is now 7am. He will probably nap for around 30 minutes during the day today and then repeat again tomorrow.

gosh that sounds hard. DD was similar (we got DLA when she was about to turn 4 - but I didn't apply before). She was non verbal, double incontinent, not sleeping. They turned us down, we asked for a reconsideration, turned down again and then got it when we appealed. so definitely don't take no for an answer. I also have an NT child and whilst hard work as a toddler, it's wasn't the same as my disabled DC. It's just hard in relation to DLA.

Good luck and don't take no for an answer.

Do you work? If not and you get middle rate or high rate care, you would also qualify for Carers Allowance then (£66/week)

I don’t currently work. I wanted to go back to work but I’m just too exhausted all of the time to be working as well.
I do have other (older) children as well so I totally know that all toddlers are demanding but my two year old is in a different league. He is on the waiting list for an autism assessment but at the moment they are treating it as communication disorder and sensory differences because they say he is too young for the autism assessment so will have it in a year or so.
I had hoped the health visitor could have helped us to get the nursery funding but she didn’t have a clue and tried to tel me that all two year olds get 15 hours free nursery.
The speech therapist told me to apply for dla as that would get us the nursery hours. I suppose I will just have to wait until he is 3 for some nursery hours if we get refused dla

One of my twins got DLA while waiting for a diagnosis (he was diagnosed about two months later). He does have other conditions but most of his care needs relate to the ASD.

The nursery hours have done wonders for the twins (the other twin now also gets DLA as he was also diagnosed a few months later). And for me honestly.

Oh and both twins were 2 when we got DLA. You must be very specific about how much extra time things take because of their additional needs.

You really need a lot of evidence to back up what you’re saying, so reports from SALT, portage (see them ASAP if you haven’t already, you may be able to self refer), paeds etc.

Thank you sinkgirl, it’s really helpful to know that it’s not totally impossible to get DLA at 2 for neurological or development conditions.
I honestly don’t think we will be successful, but at this stage I would just like a quick yes or no so I can commiserate myself if I have to wait another year for nursery funding. I haven’t even had acknowledgement that they have received my form yet so I am going to ring them today. Fortunately I photocopied it so at least I don’t have to start from scratch if I need to send another form in.

We don’t have portage involved yet but the SALT wrote a statement for me to send in with the application which confirmed our son has a communication and language disorder and other professionals involved.