universal credit for young adult with global learni... - Mencap


4,759 members1,276 posts

universal credit for young adult with global learning difficulties

mamaisbest profile image

hi im new here and looking for advise , my 20 year old son global learning difficulties severe speech and language impairment is in receipt of enhanced pip , we have just made a claim for universal credit , we have also given in a sick note from gp as he has severe anxiety . he has a reading age of a 3/5 year old child . I am his appointee but I just worry that they wont understand his difficulties ,social anxieties. we are having a home visit for his interview though . how do they support young people with these difficulties ?

many thanks

22 Replies
Shue profile image
ShueCommunity friend

Hello mamaisbest welcome. I'm not really sure re universal credit as my son recieves pip and employment support allowance, we haven't had to change over yet. It's always worrying when facing any interview re a new benefit but he is recieving pip enhanced rate and you have supplied a GP note so fingers crossed. The helpline on 0808 808 1111 or email helpline@mencap.org.uk have trained advisors who will be able to answer your questions. It would be great if you would let us know the outcome re universal credit as it is a process myself and others will face at some point. Best wishes.

Hello. I can understand your concern about this. One of my friends has just been through this. She found it a bit overwhelming, but here are a few ideas:

this is the officail guide - gov.uk/government/publicati...

It might be worth calling your citizen's advice to see if there is someone who can talk you through it. They also have a lot of info online - but none of it is LD specific.

assets.publishing.service.g... - some parts look accessible, but other sections look very complex

Loads of info on here too - turn2us.org.uk/Benefit-guid...

Make sure your son, or you, tells the person doing the interview about his learning difficulties. Can you stay with him during the interview or do you think he might need an advocate?

It is great you are getting a home visit, it suggests that they might appreicate the situation. But, as with all interviews, don't presume that that the person interviewing knows anyting about your son. Make sure you have a list of things you want to tell them, and have this with you during the interview.

Best of luck. UC is new ground for us all.

Hi dear, I don't normally intervene in story but I saw your post and think I can give u some tips. I have a son who will be 19 years next month with autism. He is verbal and has some communication difficulties. I am his appointed and I apply for his universal credit last December. As long as u are your son appointee, u will be with him for the interview and speak on his behalf if he cannot communicate. Don't worry too much, things will be fine. If the Gp certificate say he is not fit to work there is nothing the can do. The DWP will award your son uc. My Gp issue not fit to work notice every 3 months and I take it all the time to the job centre without my son for them to log in the system. Let us know how u get on.

Hi mamaisbest and welcome to the community 👋🏻

I can see you already have some great advice from others and I can’t add to that I’m afraid. I too shall be going through this scary process soon and so I just wanted to wish you lots of luck.

As Shue mentioned, please do come back and tell us how you get on, it would really help lots of us.

All the very best


Charlie2750 profile image
Charlie2750Community friend

Hello my son is now 32 and he has Global Developmental Delay with Severe Learning Disabilities. He cannot read or write but recognizes Asda and Sainsbury lorries on the motorway and can record all his programs on the Sky box but don't ask me how he does that but I assume it is called sight reading. I applied for UC nearly 2 years ago or it seems like that. At first I was looking at a website called turn2us and filled in the details of benefits Thomas receives.The calculator said I should get extra money through UC. He gets PIP and ESA and UC as well.

You (this is for benefit of others) need to apply online to get an account. They reply to you in your messages and ask you to complete certain things but he had to go for an interview but actually it was to identify him as being real because they cant check financial records and other things.Everything went smoothly eventually and he still gets his ESA. The UC amounts to £160 per month which on top of ESA and PIP helps him a lot.I say him but I am his appointee and he knows nothing about money and he lives with us. I have felt very guilty at times transferring money from his account etc and earlier It helped (not the UC) us pay the mortgage of which we are now free but the one thing I thought was that if we had been thrown out the house he would not have had a place to live and also when we are gone he and his 2 brothers will share equally the house.So I am not feeling guilty Thomas pays for his keep and towards holidays and transport for day care etc.

It ought to be straight forward as other people before have said. Good luck.

My son is 20, severely autistic. He receives UC. It was a fairly simple process. I applied. We went to the job centre for an interview. He doesn’t talk so I did that for him. He was awarded a low rate and I took fit notes in twice. Then I had a letter saying he had been put into another group and I didn’t have to do fit notes anymore and they wouldn’t ask him to look for work. He is in full time education .

This thread has been very helpful because we are applying for UC for my son when he turns 20 in 2 weeks and our tax credits stop. He has severe learning disabilities and global development delay. He has some reading/writing abilities and can communicate verbally quite well but would not be able to work.

I have read he may be able to apply for new style ESA as well as UC but if he gets both the money from the former is deducted from the latter. Has anyone claimed both and found this? It doesn't seem to be worth claiming ESA if you get no extra money.

Charlie2750 profile image
Charlie2750Community friend in reply to -Rich-

Thomas relieved ESA when he was at college because we were advised by college to apply.He has been getting that for 10+ years.He is 32 now(I cant quite remember if he was getting it at college but I suspect so Probably to fill the void after child benefit stops and wages come in!)

Last year I applied for UC and successfully got that on top so we now get PIP enhanced and ESA which is the full amount and an extra£160 UC every 4 weeks.

As far as I am aware this money is not means tested and it does not depend on what we(his mum and dad ) get in pensions. If he was getting money from another source that might affect.Direct payments is affected by what we earn I think and or what benefits he gets.

Abigailer profile image
Abigailer in reply to -Rich-

Hi, I applied on my daughters behalf for U.C back in February..she left college (couldn't get her needs met!) We had the work assessment June and even though enough points have been scored she has been giving limited capability for work but not for work related activity!!! This means she gets standard U.C only every calendar month of 251.00..before she turned 20 we received the severe disability element on child tax credits..losing about 130.00 per week..her work activity is to attend her 2 day care centres were she does arts and crafts and supported by l.d workers!! Please be aware of how underhanded these work assessments are..if I can give one piece of advice..please record the assessment.

Charlie2750 profile image
Charlie2750Community friend in reply to Abigailer

Hello Abigailer I believe that limited capability for work means she cannot work but you should be getting ESA as well as UC and also PIP.My son did not get his ESA reduced or stopped but he gets UC but a smaller amount than your daughter. His UC is paid every calendar month as you report but his ESA is paid every 2 weeks and PIP every 4 weeks therefore at the end of a year he will have received 13 months payment with PIP and ESA.

-Rich- profile image
-Rich- in reply to Abigailer

Sorry to hear that, are you going to appeal the decision? I would not call doing arts and crafts work related activity. My son can do this but what he produces is on a similar level to a 3-4 year old.

Our last tax credit payment is today, we were getting £150 a week with the severe disability element. The form has been completed online ready to submit tomorrow and we have a sick note from the doctor saying he can't work because of severe learning disabilities and epilepsy.

Do you need to submit a new sick note every 3 months? Our GP has said they will not continuously write them out, which could be a pain if they request we send a new one each time. Surely if someone has severe learning disabilities it would be obvious they can't work for the foreseeable.

BenjiB profile image
BenjiB in reply to -Rich-

We handed in 3 fit notes. There is a 13 week assessment period. My son was them awarded the higher band but I know some will need to go for an assessment at this stage. He gets UC and pip and is in full time education.

-Rich- profile image
-Rich- in reply to BenjiB

Thanks, that's good to know.

My son went for his ID appointment this morning with his Mum and that went ok. But they have given him an appointment for next week with his work coach!

Is this normal procedure when he has severe learning disabilities and gets the higher rate of both PIP elements? He's not able to do any kind of work so I had assumed he would have a work assessment rather than see a coach.

BenjiB profile image
BenjiB in reply to -Rich-


I’m not sure. I think things may have changed. We took our son for an ID appointment and that was it. After 13 weeks they moved him to the top group, he gets about £580 per month. We never had any other appointments. He is non verbal though, not sure that would make a difference.

Picklebum profile image
Picklebum in reply to -Rich-

Hi mine is 19 and at college she gets enhanced pip for both and Uc she had an I’d appt then another to see work coach who basically said she can look for work this was while at spec high school last year she went into complete meltdown told them she would have to leave school and not go to college then !! As I said now at college all ok just gets ice once a month and they don’t bother her thank goodness

Sarah_Mencap profile image

Hello there

I wondered how you were getting on? How did you and your son get on with his home interview? I really hope it went well and you felt listened to.

It would be great if you could share anything you learned/advice to share. I'm sure many other families are in a similar position and Universal Credit is so new and untested.

Best wishes


Well just to update our situation.

My son was awarded the basic PIP but they deducted over £100 a month because of his savings!

We waited for the assessment form to arrive which we completed in as much detail as we could and sent back with copies of hospital letters, his PIP award letter and EHCP letter. He had to visit the job centre twice and provide another fit note while a decision was being made.

We received the letter yesterday saying he has been put in to the limited capability for work and work-related activity group so will receive the extra money. I'm surprised they reached a decision without him having to go for an assessment.

Hopefully in 2 weeks he will start getting the extra money plus it'll be backdated 3 months.

I am now wondering if he should apply for new style ESA, although I'm not sure if he would be any better off. For every £1 of ESA he would receive £1 is deducted from the Universal Credit payment. So in theory he should end up with the same amount. The amount deducted because of savings is a fixed amount and not a percentage.

So are there any other benefits to claiming new style ESA over just having UC?

Hi mamaisbest

My son has to go through the UC next month. I am also his appointee with the DWP but I also have to get a POA for him because when people who have Disabilities reach 20 years old they stop being classified as a child and become a Adult with rights of there own. I have been told that my son will be put on the unfit to work section of U/C which means that he or I won't have to submit sick notes every so often. Nor have to attend the Job centre every time the other people has to attend.

I hope that you find this useful to you. Take care and good luck


Charlie2750 profile image
Charlie2750Community friend in reply to petejmarshall

Hi Peter

I was made appointee for my son for his benefits but I was not told that I could not be his appointee when he reached 20.He is 32 now and in this time I have changed from DLA to PIP and also claimed UC but I have never been refused because he was an adult. You cannot become a POA unless he understands that he is handing on responsibility and has mental capacity.You would need to apply to become a deputy from the Court of Protection which will cost you £400 for finance only and £400 for health beside the GPs cost of about £100.

Iwas considering this and went as far as booking an appointment with GP and filling in the forms myself but dismissed it because my son gets benefits only and has no extra income .If he had a few thousand pounds as a result of compensation or from a will it might be worthwhile but my son has no idea what I do with his money and does not know how banks work or can he tell the difference between a pound coin or a £50 note(not that we have seen many

Since leaving college at 24 the only time we went to job centre was to identify him for UC..It was so simple and I imagine that they need to make sure that you are claiming for a real person.I can just remember people claiming for non existent people/relatives when filling in tax forms years ago!!

Good luck Peter

Hi there, universal credit is taking over from ESA. My 21 year old son receives UC monthly. When we applied I took him to the jobcentre interview where they gave me information on how to set up an online UC account for my son. The work coach can message you through this .

I felt completely overwhelmed but its quite easy. I got a fit note from the dr and we were able to get an additional add on due to my sons disabilities which then meant we didnt have to go back for 2 years to the jobcentre. My son is in college at the moment and receives his UC monthly. I did lose money going from child tax credits to UC but I'm a single mum so not sure how much you get.

The work coaches are great at the jobcentre and will help you with everything. I never check my sons UC account because I get an email whenever there is an action I need to take. Good luck 🙂

Hi my young person gets enhanced pip and also UC had a few interviews but she is on non advanced college course had no prob does not have to produce a sick note

Think again before taking out a loan. But if you don't have another choice, then you need to pick the right bank to take out a loan. I'm pretty sure you have other loans. I recommend that you consolidate all your loans into one. Then you pay less money in interest. These guys help you yhdistalaina.com, I had 4 loans, and they consolidated them all into one, and I saved a lot of money. I hope your son gets better and everything in his life will be good. I believe that such operations should be paid for by the state.

You may also like...