AIBU to seek a mandatory reconsideration of my son’s DLA award?

[Blinmey]

I have just got my son’s renewal back, they have awarded him low-rate care and low rate mobility. However I think he should have got a higher award, he has autism, adhd and a gastrointestinal diagnosis. Whilst all his needs means he consistently needs help with lots of things, his gastrointestinal issue is one of the most significant as he soils throughout the day and night and with his autism he needs help with this (changing pants, washing underwear, washing hands, showering, hygiene). He gets up during the night and needs help with this, as he will do things like put soiled pants back on or not wash his hands or leave the toilet in a state. I put all of this on his form and gave the evidence which is letters from his paediatrician confirming all of this. The reasons DLA gave for low-rate was that he is at a mainstream school, he doesn’t have an EHCP and he’s described as being clever and happy.

He is 12.

Does this sound right to experts on here or should I be putting in a mandatory reconsideration?

Does he not have an ehcp for support with the soiling at school?

No, he is at a private school (which helps immensely, if he was at state we would likely have school refusal on our hands). He has a toilet pass. At school he will do everything and anything to avoid using the bathrooms (ironically he says the school toilets are disgusting) we time his laxative medication so it kicks in in the evening. This is one of the reasons he has bad soiling, constipation and stretched bowel and rectum because he will avoid using the toilet for those 7 hours, if he soils he will just not realise, thankfully we have been ok as it doesn’t seem other children have noticed and he hadn’t been bullied.

Also school has says it would be extremely difficult to get one as he is so academically able and because it’s a private school there isn’t much point.

Someone very close to me went through this-even got it to some kind of court (tribunal? not sure) and it caused a lot of stress for nothing. I don't know you, obviously, but I almost wish I'd advised her not to do it, as it almost broke her for nothing.

The reason why I am wanting to challenge is because online it says help for up to one hour a day for low rate, my sons bowel condition alone means he has over an hour of extra care a day, not even considering his care for his neurodivergence

Given your son needs help throughout the night should mean he gets a higher rate! How ridiculous. I applied for a mandatory reconsideration and got a higher rate for my son so you could try

I would say it's worth giving it a go, at worst it'll be rejected but you never know.

Yes I wrote all of this, I even created a diary to show how long things take (for example I have to sit outside of the toilet for 15 minutes prompting him to sit as otherwise he will get up complaining his legs ache), I’m not sure what has happened.

Mandatory reconsideration is worth doing, it costs nothing and someone will review the application - it’s always worth doing in the first instance. I don’t know if they consider additional information at this stage though so you won’t be able to emphasise how much additional care he needs if it’s not already on the for .

DD is in a mainstream school without a EHCP (the SENCO was overhelmed but helpful). She has autism and a processing disorder and got middle rate for both.
Did you include a diary, I think it’s one of the most useful things you can include. I’m surprised at the low rate care if your sleep is interrupted and he needs help washing.

I also had evidence from his paediatrician confirming his bowel issue happens through the night and still low rate, it’s not just my word but doctor evidence

I did do a daily diary of his care and his bowel condition, I only did it as one day through and said this is representative of everyday so maybe I should’ve made it more comprehensive?

Your diary should be for the worst possible day - but yes, go for a MR as it's quick and easy and often then gets awarded at the correct level.

I did a diary for a week so it showed the variable days.

We get middle rate care and lower rate mobility for my son who is non-verbal, doubly incontinent, at a special school. Reading this I feel we should be getting the high rate!

So much depends on how you fill the form I think, my friend gets HRC and HRM for her son who is at mainstream but has an EHCP and 1-1

They told me on the phone to submit more evidence so I will do a week and redirect them to the other evidence I’ve sent

EHCPs are not just about academic needs. They cover health and care needs too. You can and IMHO should start the process to apply for one yourself.
It's pretty normal for DLA to send a form to the school for completion so I wonder what they have said about his care needs especially if he is managing at school

And yes, mandatory reconsideration is worth it. Yiundobt ha e long so start gathering evidence asap

He’s in Year 7 and only just joined the school in September, I sent off forms in March, so they haven’t had that long to know him to be honest.

The reason I haven’t bothered is he is generally ok at school, because there are only 12 in his class he is supported very well. The school also has a very high percentage of SEN so they are so well equipped. I don’t see what benefit an EHCP would have, I explained on the form this too and said he’s in such small classes and explained about the school. The school is essentially a reasonable adjustment for his disability, we’d be in a completely different situation if he was in a massive school I am certain.

I think that is short sighted as without an EHCP that support he is getting is not legally protected and coukd be stopped at any time.

That’s true but he’s at a private school, he doesn’t need a 1-1, just the teachers looking out for him and reminding and prompting him, which they do for many children as a huge percentage of the children are neurodivergent

You can afford private school for him so you clearly don’t need the extra money from DLA. Why do you think you should get even more money. Seriously what’s the point. It’s not going to benefit him in any way.

DLA is a gateway to a whole variety of supports for disabled children, which you can’t get in other ways. Besides which private schooling is in this case an additional cost of disability - which is what DLA is there to support.

If hes soiling through the day that would be MRC
Whose helping him witj his self care at school?

Exactly this. We are not flush with cash, I use his DLA to pay for some of his private school fees so that his needs aren’t a drain on a mainstream secondary school - which wouldn’t be able to meet his needs anyway as he needs small classes - and to give him the best chance of becoming a well-rounded disabled adult who can enter the workforce and contribute.

@VanillaSpiceCandle