I don't know what else to send DLA

[Hogi]

I can’t help but think I’m gonna be declined.

For my two year old I’ve sent all paediatrician letters confirming diagnosis of genetic disorder, GDD, significant speech and language delay, low muscle tone and hypermobility. This also states the referrals to physiotherapy, speech and language, occupational therapy and genetics.

I’ve sent a letter from the childminder as well.

I’ve also sent my own statements in explaining how he has problems with his bowels and it’s either too loose causing multiple clothes changes or it’s too hard causing extreme pain that keeps him up through the night (we do have medication so trying our best to try and sort it out).

I’ve also explained he needs his food sepetating completely so separate plates as he cannot stand food on the same plate (even those trays) it’s very difficult to get him to eat anything at all really.

I’ve explained he wakes at 2-3am and will stay awake until 7-10am where he needs supervision as he won’t stay in his cot and will scream until he’s taken downstairs.

I’ve explained that he can’t dress himself or put his shoes on etc I’ve kind of explained it’s almost like dressing a new born as he doesn’t really understand why he needs to wear clothes - he can become distressed when getting dressed/undressed as well so can take up to 45 minutes to dress him - same for bath time. Bath time can take 60 minutes.

We’ve also explained his violent melt downs and sometimes needing to lock him in his room with an adult to keep him away from the baby. (I don’t mean actually lock him in, I mean we sit in his bedroom with him until he calms down this can be for 2-3 hours)

I’ve also explained it’s difficult taking him out as he has melt downs and can become violent and explained he can become very distressed in places meaning we have to leave immediately.

Also said with him being non verbal he obviously cannot communicate his needs to us.

I genuinely don’t know what else I can send or say.

This wait is awful and I don't know what else I could send if I had to do an MR.

I just feel very frustrated and wanted to sort of vent and see if anyone had any advice of what other evidence they may need.

My son is very complex. Completely unaware of his surroundings, requires numerous amount of aids and protective equipment, he is really disabled. I'm struggling to understand how a bath would take an hour? 60 Whole minutes is awfully long, my child requires 2 adults help in almost everything he does and doesn't not take 1 hour to bath. Just be careful because you don't want to get done for fraud by lying about timings.

Evidence is very important to back up what care you provide sounds enough evidence to me so good luck!!

I'm not lying about times - when I say 60 minutes for bath time I mean getting him undressed, getting him in the bath, making sure he's cleaned and done what we need to do, getting him out of the bath and then getting him dressed again. It's a very stressful experience and I don't always have two people to help out, he's the size of a five year old so carrying and restraining can take a little while - the whole experience can take up to an hour not just the time in the bath.

Hopefully I've sent enough of evidence - we think he's autistic too but won't be able to have an assessment yet.

Understood! Sorry about that. I know exactly how stressful you must feel, it is so difficult raising disabled children but you have plenty of evidence to show your extra care you provide, do not worry, proud of you x

It's my fault for not being clear. I can see it reads like 60 minutes in the bath which would be a bit weird but I just meant the whole thing.

It is really hard but I didn't want to waste like DLAs time applying if he wasn't eligible.

I think he is reading the descriptors so fingers crossed I've sent enough.

Thank you for your help x

You have sent more evidence than some others do. Are Portage involved? Does DS have an EHCP? - If he doesn’t then you should request an EHCNA anyway.

I've mentioned portage on the letter - they did six sessions with him and a specialist inclusion teacher is going to the childminders every term.

The HV said something about the EHCP but nothings been sorted yet.

You can request an EHCNA yourself - on their website IPSEA has a model letter you can use. Completely separate to DLA but something you should pursue as an EHCP can provide so much more support e.g. more SALT, OT, physio than would otherwise be offered and without the need to sit on the normal waiting lists.

Haha @Hogi an hour in the bath, DS sure would be wrinkly! Don't you even think that! It is your right to apply for care where you've got a child with clear additional needs. You'll be absolutely fine as you've submitted evidence and it's a upper hand having evidence because they have it to go off. No disrespect but everyone can claim dla and say their child has lots of needs but they need some sort of professional evidence to support the claim.
@FloatingBean how would I go about an ehcp? My son is very complex and terribly dangerous to himself, possibly due to start nursery but have not yet decided where to place him due to his needs. Any advice for me?

@Autismum4 on their website IPSEA have a model letter you can use to request an EHCNA.

Some LAs have specialist early years assessment places DC can attend whilst undergoing the EHCP process. If your LA does and you think it is necessary you could pursue a place there.

Nurseries can also apply for early years inclusion funding if they need additional funding to meet DS’s needs. You don’t say how old DS is, but in some areas this is only for 3 and 4 year olds, and in others 2y/o’s can receive it. They can also ask for advice from the Area SENCO. And, if you claim DLA the nursery can apply for disability access funding for 3 and 4 year olds.

@FloatingBean thank you so much. Your knowledge is incredible and will help me because I knew nothing about it thank you!!