DLA help please

[TheGreatestunknown]

Hi everyone.

I've recently applied for DLA for my two year old and basically, I've sent off both paediatrician reports stating my son's diagnosis (rare chromosome disorder) , him needing physiotherapy, occupational health, speech and language therapy, a specialist inclusion teacher at childminders and that the HV is scheduling a visit with a nursery nurse to see if we need to go down the ASD pathway.

I've also attached the letter I sent to the paediatrician so they could see that info.
Even though I know he won't be awarded mobility until he's 3 I've explained he can't walk and needs special aids like a stand and a specialist buggy due to his size and he isn't expected to walk until he's 5 and still may need a wheelchair.

I've also explained he stuffs his mouth until he is sick or chokes and we need to sit with him to stop this obviously, I've also said his bowels are bad (part of his condition) so one extreme to another we're either constantly changing him or he's up all night in pain. I've explained he's a bad sleeper normally getting up at 2/3am and staying awake until 7-10am and nothing settles him and we've discussed melatonin with the GP but nothing has been put into place yet as I am reluctant.

I've explained that even though two-year-olds don't understand the danger, he needs more supervision as he doesn't understand words (he's delayed) so won't respond to his name, no or don't touch so need to keep him safe.

I've also said we have to remove him from most social situations as he becomes extremely distressed and either becomes violent (hurting himself and others) or withdrawn. I've explained he can't change his own clothes, or put his shoes to coat on and said children a similar age at his childminders can. I've also mentioned it's like dressing a newborn because he doesn't help and we think it's because he doesn't know what clothes are or why we wear them. I've also stated he's non verbal.

I've explained how his needs and care are more than you would expect for a two-year-old and how he needs care both day and night but I'm not sure what else I need to put or send?

Can anyone advice please what else I may need to send? I asked on a specific DLA support group on Facebook but someone said they put similar and got HRC and then other person said there's nothing wrong with my son and he'll be lucky to get LCM when he's three so I'm not even sure if he's entitled to an award but the portage team told me to apply but I think I've sent all I can really?

Thank you for reading, I know it's long I'm just flapping I think.

I also appreciate this may not have been the best time to ask about it but said two year old is up and on the go so thought I might as well

Is anyone around who could help?

You seem to have included a lot of information but you have to bear in mind that a lot of children of his age still need a significant amount of care . It’s also not uncommon for a child of his age to have a disturbed sleep pattern. That said he does seem to have additional needs so you may get an award.

Thank you, I appreciate at two most children have disturbed sleep but he's awake for hours (last week he just didn't go to bed and was awake until 3pm the next day, dunno how he does it) and he has to be constantly supervised which is why I did mention it in the form but I would see why they may not include it.

Have you looked at the Cerebra guide to filling in the DLA form? It takes you through each question. I can’t see why you wouldn’t be awarded based on what you’ve written and the paed’s letter. you can always appeal.

Yes a three year old still needs a level of support but most are becoming (and wanting to be) independent, it just isn’t the same. Similarly the night waking. It might be normal for them to wake a few times and/or get into the parents’ bed, need to be changed etc. It’s not usual for a typically developing child to be up half the night on a regular basis.

Also reading above sounds like my form except I've used the help of sen teacher that may help x

It's frustrating isn't it.

I don't have a Sen teacher but my childminder has sent a letter so who knows it feels inconsistent because I asked on a DLA fb group and someone said they said similar and they got HRC for their 18 month old yet other get MRC or nothing at all.

It's hard to know but I've sent everything I can and I guess it's just a wait and see but I'll be fighting it because he meets all the eligibility.

Hopefully all will work in our favour for our children dw girl input all information all doctors reviews, health visitors, referrals etc & try get the health visitor to help on the form that way you have a proof of someone seeing him like that

My DS at 8 is like this and he was declined. Something I am currently fighting at tribunal. There doesn't seem to be a set rule when it comes to DLA. I thinks it's a very unfair system

Hi I'm just looking for advice really, I'm looking to do a Mr for my son he has been awarded lrm he already is in recipient of hrc, I'm looking to do Mr for hrm he is diagnosed autism spectrum disorder, global developmental delay, servere receptive and expressive language difficulties, also awaiting a adhd diagnosis

He has refusal to walk episodes every day to the extant he has to use a push chair or trike we are currently in talks about a specialised buggy or wheel chair there that bad
No danger awareness
Displays servere unpredictable and disruptive behaviour to the point he can't be left alone home or school has a 1-1 through out whole school day including break and lunch as out of the blue would pinch bite or hit anyone in his proximity so has to be physically removed from the Situation.

I'm just wondering has anyone been successful with a child like mine as I'm finding it really hard to go anywhere with him.
It's just really draining not knowing weather I have a case for smi rules or vuw xx

Any help would be really appreciated
Thank you

Hey I advise you to go ahead. They cannot tell you what will support your child other than you, so I suggest you go ahead and apply for everything that will benefit him. I have high rate care and low rate mobility. My child is diagnosed as severely sight impaired and developmentally delayed. I wrote a cover letter stating why I disagree with the decision which part I disagree with. And what I believed the outcome should of been. I sent off a report from the consultant stating he is ssi and has mobility needs. I got a teaching assistant who wrote that he is being 1-1 daily and weekly he gets the cane training lady. Within 11 days I received a response that stated he is successful and has been awarded hrm & hrc for 10 years. Good luck girl you got this.

I need help with smi part of dla what is best evidence of the part for servere Impairment of intelligence ? Or any evidence ? X

My DD is now 3 but first awarded when she was 2, I sent:
-hospital letters (the ones following appointments with outcomes, recommendations, summaries etc.)
-portage report
-physio/speech/OT plans
-statement from her social worker
-copy of medications perscription
-EHCP application for assessment of need from nursery
-all the nursery support plans (one page profile, communication support plan etc.)

She was awarded low rate care. When she turned 3 it was renewed and she got high rate care and high rate mobility. It's really hard to evidence for 2 year olds as all 2 year old need alot of care.