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DLA & UC help

12 replies

biostudent · 19/02/2024 12:45

I apologise in advance as this might be a long one but really needing some advice.
My son is currently awaiting an autism diagnosis, but his needs are very high. For reference he is 4 at the end of this month (Feb), so in nursery, he goes 4 days a week 8:30-4. He is non-verbal, his understanding is improving but his impulse control is not, and he has no sense of danger whatsoever, meaning he needs a lot of supervision, even in the house (example, I needed to cook dinner and it was only the two of us, I was in a cupboard getting out the sauce for the dinner and saw him reaching to touch the flame underneath the pan on the hob - was right next to him so managed to stop him, explain etc but this is just one thing he does now).
We are now experiencing the problems with sleep, have found that rescue remedy drops help but he does still wake in the night, usually for his dummy or if he's wet through his nappy but still most nights I am up. Recently he's been going to sleep anywhere between 9:30 and 11:30pm and can get up anywhere from 6 to 9am, so some nights I'm barely getting 5 hours sleep.
He is not potty trained and needs help with everything, dressing, nappy changes, brushing his teeth, bathing etc, he struggles with a knife and fork and is very fussy around food, and often needs a lot of encouragment with eating. When we go for days out, we ned to take a pram but we need to invest in a disability pram, which also won't fit in our car (have tried one) so will need to get a bigger car.
I am absolutely shattered, because despite my partner (my son's dad) doing absolutely everything he can to help, my son will refuse him and only want me. My partner also works 12 hour shifts, sometimes 4 a week sometimes 5/6 a week depending on overtime, he is also suffering with a really bad back due to a car accident a few years ago which rears its ugly head a few times a year to the point h can barely walk so I try and take more of the physical things off his plate so that we can avoid that.
My question is basically, if we are awarded the higher rate of DLA which it looks like we might be, can we claim the disability and carer's element of UC and is it dependent on my partner's income or is it done on the rate of DLA that you are awarded? I genuinely am at a point where work is becoming impossible, I struggle to find anyone willing to have my son in the holidays for more than a couple of hours, he often struggles at nursery and is sent home and I need to be able to keep the house much tidier and cleaner than it currently is, all imposible while my son is at home (when he's at nursery I'm at work bar one day which isn't enough). I am almost at breaking point but I need to know if financially it will be feasible, and whether the rate of DLA determines the amount of disability and carer's I will receive or whether it is my partner's income?

OP posts:
SearchingForSolitude · 19/02/2024 14:09

whether the rate of DLA determines the amount of disability and carer's I will receive or whether it is my partner's income?

Both.

UC is means tested based on earnings. Earnings (minus the work allowance of £631 if you don’t have a housing element or £379 if you do) is multiplied by 0.55 and then deducted from the total of the elements.

The rate of DLA determines whether you are eligible for the disabled child element or severely disabled child element and if you are eligible for the carer element.

The disabled child element is for DC who receive any other DLA or PIP claim. The severely disabled child element is for DC who receives high rate care DLA or enhanced care component PIP or are blind. You will be able to receive the carer element if DS receives the mid or high rate care DLA.

Carer’s allowance is separate. If DS gets MRC or HRC and your earnings are below £139 after expenses you can claim that regardless of DH’s earnings. If you claim UC, carer’s allowance will be deducted £ for £ from UC but it is still worth claim CA because it gives better NI credits.

If DS is sleeping 9.30/11.30pm-6/9am you may not get HRC.

Does DS have an EHCP? Why is he being sent home?

Have you requested a referral to wheelchair services? What SN buggy did you try?

biostudent · 21/02/2024 10:22

@SearchingForSolitude Thank you for your response, that has definitely helped!

With the sleep he will still wake at least once a night for anywhere between 5 mins and 3 hours. We are in the process of obtaining an EHCP but it hasn't been approved yet. He will get sent home for various things but the main one recently is he will close his eyes and flat out refuse to open them, do anything, eat, drink etc.

In regards to the pram my stepdaughter's sister at her mum's house is also autistic and she let me try the pram they bought for her in our biggest car (we have a very small very run down second car so definitely won't fit in that one) but it was too big no matter how I tried it.

I think we will go through the applications for everything and see how much we can get etc as I'm drained and feeling a little bit broken.

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SearchingForSolitude · 21/02/2024 14:02

Ah, when you said DS was sleeping 9.30/11.30pm-6/9am, I thought you meant he was sleeping through.

Is the LA sticking the EHCP timescales?

Do you think sometimes the nursery is sending DS home because it is the easier option for them?

The reason I asked what SN buggy you tried is because there are lots of different types and some are bigger than others when folded. If it was one of the larger ones, I was going to suggest trying a smaller one.

LittleCoffeePot · 21/02/2024 14:20

For under 5's you can only get the High Rate Mobility element of DLA and the criteria is quite strict. In general, it's for children who cannot walk at all, have a 'severe mental impairment' or are 'virtually unable to walk'. There is a Cerebra guide which has lots of helpful info about applying for DLA.

My DS sounds very similar to yours though he had a diagnosis and we were awarded MRC only but he was only 3 when we applied. We're reapplying when he turns 5 soon and may be eligible for Lower Rate Mobility.

biostudent · 21/02/2024 14:40

@LittleCoffeePot to be completely honest I doubt we'll get anything for mobility as he is physically able but we should be able to get DLA without mobility as his care needs are still remarkably high, bless him!

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biostudent · 21/02/2024 14:43

@SearchingForSolitude That's okay, honestly the EHCP is going through remarkably quickly, it was only started in December and the reports from Speech therapy and the ed psych have already been completed. Nursery are actually incredible, they definitely keep him as long as they can, I've got there before and I can hear him screaming from outside, when he's like that he won't let anyone near him and will lash out at anyone who tries except me, even his dad will get a whack if he gets too close when he's like that, so I fully understand they need to keep the other children safe. I'm going to look around for a smaller one but I think the one I tried was on the smaller side, our boot is really quite little!

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SearchingForSolitude · 21/02/2024 15:27

From your posts, I think you HRM may be possible. Have a look at this guide from Contact.

biostudent · 22/02/2024 08:59

@SearchingForSolitude Thank you for your kind help and not judging, a lot of my friends have been quite judgmental about the whole situation and don't seem to grasp quite how much care he actually requires.

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SearchingForSolitude · 22/02/2024 13:17

Unless others live it they don’t understand.

Charlxs · 27/02/2024 18:54

@biostudent your son sounds exactly like mine! We’ve just been rewarded today, hrc & lrm.

saturnspinkhoop · 29/02/2024 13:03

A couple of little points that may or not may be helpful:-

I don’t know if you’ve tried a babyjogger city mini. They aren’t small, but may be smaller than what you’ve been looking at. They won’t last forever, but my 4 year old is using it and it fits her still. You could probably pick one up second hand.

My daughter is Autistic (sounds a lot like your child) and refuses to walk. We’ve been awarded high rate mobility. We had to go to appeal, but the panel were lovely.

biostudent · 29/02/2024 14:13

@saturnspinkhoop Thank you - we are looking at upgrading the car anyway as holidays and days out even can be a bit of a squash, so I think we are going to get something that lasts a bit longer! This is the issue we have, my son will either refuse to walk and demand to be carried or he'll bolt and could end up in the road bc his stroller is just not big enough anymore :(
I'd love to not have to restrain him when he doe want to walk but I have to keep him safe. It's much easier if I take him for days out etc on my own as opposed to with his sister and dad, partly because he has free reign to do what he wants, but also his sister winds him up sometimes just by talking to him and that's not her fault but it means he'll run to try and get away.

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