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Worried about not being awarded DLA

7 replies

L0ts · 09/12/2022 10:15

Finally got the paperwork come through a couple of weeks a go after having requested it as early as the beginning of September and had to keep ringing to see why they hadn’t sent it (need to write a note apparently to make sure pay is backdated if we are awarded it), stared at it for the last 10 days and now have been getting round to filling it in.

My son is coming up to 4 and has autism, yet to have an official diagnosis but has seen paediatrician who agrees and has referred us to see the autism team, been waiting for this appointment for about 6 weeks now.

For supporting evidence we have reports from the paediatrician, his nursery and his speech therapist. His nursery teacher has also happily filled in the section of the forms where somebody else who knows the child can write something. Everything she has written has echoed what I have written too, thankfully.

Basically my son is a handful, he isn’t entirely non verbal more so non communicative. He doesn’t express his wants and needs at all. He’s still in nappies as his understanding is poor, won’t follow instructions and is a complete and utter whirlwind almost 24/7. He won’t walk anywhere, he is almost 4 and still using a buggy as he is not aware of dangers at all and again, won’t follow instructions or hold your hand. He literally will either run away or drop to the floor and cry (worryingly this actually happened in the middle of a road before, luckily it wasn’t a busy one). He tip toe walks occasionally and has random obsessions with spinning. One spinning session led to a hospital visit after he landed on the metal bed frame and cut his head open.

He still needs a lot of help with getting dressed, eating and drinking, washing etc. we have to physically rub his hands together ourselves under the tap as he just doesn’t understand the concept. He won’t brush his teeth himself or clean himself when in the bath either.

Night times are where we struggle the most. He CAN sleep through the night but as you’re supposed to write about your worst days then night times really are terrible. He won’t sleep with a duvet over him, he still uses a sleeping bag. We are forever monitoring his temperature as he won’t remove clothing if too warm or like I say, use a duvet or blanket if he got cold. He can get out of bed and wander and because he’s in a sleeping bag and in total darkness he of course trips and hurts himself. On bad nights he literally wakes and needs constantly resettling 10+ times a night, it’s relentless. In more recent times one of us has just ended up sleeping on his cold, hard bedroom floor because the wakings occur that often.

I guess I just want to know if there’s a chance you guys think we either will or won’t get it? Although I’m fully aware that will make no difference except give me some peace of mind. Relying on this money as he has some speech therapy sessions coming up soon FINALLY!! But they are out of town and I really could do with my own car (partner has our family car for 12 hours a day at work) to take him and also to take him to other places to do different activities as he really thrives off keeping as busy as possible. He’s never been the kind of kid to sit and watch a movie or sit and colour for a while.

OP posts:
BiscoffAnythingIsTheWayForward · 10/12/2022 19:23

Hi OP

Your son sounds very similar to mine. My son is autistic (diagnosed when he was just 4) and aged 7. He’s received DLA since the age of 3. So DLA is looking for care needs compared to another child of his age that is neurotypical. It essentially comes down to how many hours a day does he need 1:1 care and support. Specifically list in time terms i.e. 1.5 hours per day assisting him to eat/1 hour per day to change nappies and clean him afterwards/bathing 30 mins per day as he ain’t able to wash himself even if guided/1hr per day to settle to sleep/X amount of hours a night awake for X amount of nights per week. That’s what they are assessing. The supporting paperwork confirms the reason for his additional needs, the evidence that determines if he will be awarded DLA and what rates is based on the care needs. Our son also is not safety conscious, even now so can not be left alone at any point of the day and I emphasised this a lot and gave information on the precautions we took and still do, to keep him safe (window restrictions/sash jammers/alarms on doors/safety gates etc.

You may have a local charity that can help you to fill the forms out (mine is called Uniqueways but only based locally) or if he receives portage funding at nursery, they can help you to complete this?

Sjknmm6 · 11/12/2022 22:19

Hi, I applied for dc dla mid October and received a letter to state they received the claim after 5 weeks.
been told numerous timescales on a decision, 8 weeks, 12 weeks and 15 weeks? Which is the most accurate, has anyone else received their decision yet if applying around the ale time?
was told 2 weeks ago that it hasn’t been looked at yet, just in a holding pile!
Thanks

MadmamMi · 12/12/2022 11:26

Sjknmm6 · 11/12/2022 22:19

Hi, I applied for dc dla mid October and received a letter to state they received the claim after 5 weeks.
been told numerous timescales on a decision, 8 weeks, 12 weeks and 15 weeks? Which is the most accurate, has anyone else received their decision yet if applying around the ale time?
was told 2 weeks ago that it hasn’t been looked at yet, just in a holding pile!
Thanks

Wondering the same. Mine hadn’t been looked at last Monday and was received oct 12th but someone told me they sent theirs late September and were paid last week. Very confusing.

Sjknmm6 · 12/12/2022 19:25

After looking at other threads regarding the same issue, it looks like it’s a total of 12 weeks wait at least!
Does this sound about right to whoever’s already received their decision?

openupmyeagereyes · 13/12/2022 10:42

12-14 weeks is common.

L0ts · 13/12/2022 18:57

Well that’s it, I’ve sent them off! It’s taken all in all 8 days to fill out and to get it all photocopied. Still very anxious and anticipating being rejected but hey, I’ve really tried and we can always appeal I suppose. I’ve put in the 3 reports from speech therapist, his nursery teacher and paediatrician. I’ve also written an extra five pages of all the things we have to do for our son that the parents of a neurotypical child of the same age wouldn’t have to do. I felt awful reading it all back, my son has been doing better than he was a couple of months a go in some areas of life but I suppose you have to think about your bad days and we still have A LOT of those.

OP posts:
K120200 · 04/11/2023 18:59

Hi, not sure if this helps but my son is 2 turning 3 in December. He hasn’t been diagnosed with autism yet as he can’t be referred to social communication pathway where I’m from until he’s 3. I applied for dla for him 4 months ago, he got accepted with my letters from doctors health visitor his nursery and caps. He got accepted for the higher rate dla after 15 weeks.

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