Autism and Universal Credit

Lammy · October 2018

My son is autistic, and not able to communicate, so I deal with everything for him. He is a new claimant for Universal Credit having become an adult. As a disabled child, he received child tax credits and child benefit as well as PIP. Now that he is only getting UC and PIP, his money has dropped by £109.50 per WEEK. He will also have to carry on paying £14.60 each week towards his respite care, which is compulsory no matter what your income. I can hardly believe that this is lawful. If he did not have his PIP, we could not afford to exist.

Ami2301 · October 2018

Hi @Lammy welcome to the community!

Sorry to hear this, it sounds like a very stressful situation for you. Is there anything at all that we can help you with?

Lammy · October 2018

Hi Ami2301,

I just wondered if anyone else has discovered that new claimants for UC are offered no transitional top up benefit from the child tax credits they had to drop just because they are now an adult. It is so unfair. I think as more young disabled people have to claim UC under these conditions there will have to be something done about it. My income is only £114 per week at the moment, so I am struggling.

poppy123456 · October 2018

Lammy said:

Hi Ami2301,
I just wondered if anyone else has discovered that new claimants for UC are offered no transitional top up benefit from the child tax credits they had to drop just because they are now an adult. It is so unfair. I think as more young disabled people have to claim UC under these conditions there will have to be something done about it. My income is only £114 per week at the moment, so I am struggling.

Child tax credits stops once they leave full time education. There's no transitional protection because the child tax credits were yours and you were claiming them because he was a dependent child.

The UC claim is his and he claims this in his own right because he's now classed as an adult.

Does he send in fit/sick notes from his GP and has he been sent a UC50 how your disability affects you form? He should be sent this, if he's sending in those fit notes from his GP, you'll need to send in evidence with the form to prove he's unfit for work. They will then send him for a face 2 face assessment like he had for PIP. Once a decision is made after the work capability assessment, if he's placed into LCWRA then he'll be paid extra money on top of his UC standard allowance. If he's placed in the LCW group or found fit for work then no extra money is paid.

Lammy · October 2018

Hi Poppy, Thanks for replying. Alfie doesn't send sick notes in. The agent at the job centre interview marked him down as not capable for work or work related activity and turned off his alerts for interviews, etc. but did not mention any assessment. Will he be sent a UC50 ? If so, they're not in a hurry. His application went in on August 31st. Thanks for the information. I'll write the query into his online UC journal.

poppy123456 · October 2018

He will need to send in fit/sick notes from his GP otherwise he'll never have a work capability assessment. I don't understand why his job coach turned everything off as he's not sending in those fit/sick notes.

Lammy · October 2018

Ok thanks Poppy. I don't know why she didn't explain things better. I'm waiting for her to reply to my journal entry. Many thanks.

poppy123456 · October 2018

Lammy said:

Ok thanks Poppy. I don't know why she didn't explain things better. I'm waiting for her to reply to my journal entry. Many thanks.

DWP have had very little training when it comes to UC and a lot of them have no idea what they're doing.

Lammy · October 2018

Hmm, that certainly makes sense. Thanks Poppy.

mdia · October 2018

I am in a similar situation with my daughter, and have taken in 2 sick notes, which are for only 4 week at a time ,so far, since September 1st. I am also wondering when they will get around to sending out the work capability assessment form.online, it says that from day 29 after the initial sick note is sent in , they will look into the application for the additional disability element.

poppy123456 · October 2018

mdia said:

I am in a similar situation with my daughter, and have taken in 2 sick notes, which are for only 4 week at a time ,so far, since September 1st. I am also wondering when they will get around to sending out the work capability assessment form.online, it says that from day 29 after the initial sick note is sent in , they will look into the application for the additional disability element.

Hi,

Once she receives that UC50 form, it will need to be filled in with as much information about how her conditions affect her as possible. It will need to be returned no later than the date stated. She should send all supporting evidence with the form, as they very rarely contact anyone for this. Expect a face to face assessment as most people have them. It's very rare to have a paper based decision.

onlygirl · October 2018

Hi Lanny

I am in exactly the same situation with my son who as an adult had to make his own claim for UC in November 2017 after he turned 20 and my CTC and CB ended. He also lost around £400 each month. He had his face to face found to have LCW and placed in the work preperation group which I'm appealing. He is ASD, Dyspraxic, ADD also sicial anxiety. At present his work commitments have changed from work preperation to no work related requirements. Which I assume until the outcome of the appeal...it's been an ongoing battle

Lammy · October 2018

Hi Onlygirl,
Does your son get PIP at the enhanced rate? I'm amazed that the DWP don't use the PIP assessment as evidence of capability, especially when we had to jump through so many hoops to get PIP in the first place. So your son is just getting the basic UC rate like mine? How long does the appeal take? My heart goes out to you, it really does. As if we haven't enough stress in our lives.

onlygirl · October 2018

Hi Again Lammy, my son gets PIP enhanced care and standard mobility, he has an educational health care plan and is supported in every aspect from either family or staff trained to help him. Even so he is assessed as having LCW for UC and placed in the work preperation group. I'm informed that he could be asked to attend courses to help him into employment, when pushed on what courses the work coach was considering she said it could be brick laying, plastering, painting/decorating...he also has a diagnosis of dyspraxia and ADHD and social anxiety...I asked his work coach if she knew anything about dyspraxia and the difficulties my son faces everyday...she didn't...also no one at my local job centre has any training to advise us of any practical or meaningful help for him . Yes he gets standard rate of 251 each calendar month...his appeal is on 7th of November.. he's been awarded 0 points for LCWRA...it's been a nigntmare

Lammy · October 2018

I can imagine! How would he cope on one of these courses? Would he be given support by a qualified carer or would he be expected to cope on his own? I know my own son would not be able to cope with anything like this. It was difficult enough getting him to the job centre for his initial interview. All he could do was nod his head because he hadn't a clue what he was there for or what the agent was talking about.
The whole idea is just ridiculous, and if the experience worsened your son's condition(s), who is then responsible? I'm guessing no-one, and as usual the family has to take the fallout. Ian Duncan Smith needs hauling over the coals for this mess. Good luck with the appeal.

kellz · November 2018

Hi there,could anyone offer some advice as im so confused over universal credit iv been threw hell with them in every aspect now im going threw dissagrement in concerns to my son he turned 19 in july just gone he is under a ehcp statment 19-25 statment,he is classed as a continuer in full time education but had to be transferred to a collage that Carter's for his needs he was ecepted for this course befor he turned 19 ,universal credit has stopped my payment for him since he turned 19 even tho i still recive his child benifit also i had informed uc he was continue in full time education he is in recipient of pip,and yet the way iv been treated by uc is a dissgrace no one can explain the reason why hes been taken off they told me he needs to claim in his own right but i feel this is not in his best intrest as i have been told he would be given the choice of his ehcp or get uc but carnt have both i can not carry on in this situation as my daughter has grade 4 epilepsy also i have an illness that i have not put a sick not in for due to the stress of sorting my sons money i have a brain condition called (iih) i have told them i will not allow him to claim in his own right as he is not capable to do this he has autisum,mld,speech and language delay ,learning difficulties i feel so depressed i have asked for help from every were im so frustrated now theyv dopped my money down to £600 for the month iv been getting less and less each time it feels like the i complain the more they take im missing hundred each month now and im in so much debt its unreal please can some one help with this sorry its long to read but i feel like the whole system has dissregarded my son and hes being discriminated for having this life long disabilities i feel for any one els going threw this as its so cruel its not right they are part of this world also just because they have disabilitys they get brushed under the carpet its unreal..

poppy123456 · November 2018

Hi,

The rules for child element of UC are different to the rules for tax credits and those in full time non advanced education. Under tax credit then you would have still been able to claim the tax credits for him until he reaches his 20th birthday.

For Universal credit, it's different. You will only receive the child element of UC for him until 31st August following his 19th birthday. After this date your payments for him will stop. Being in full time non advanced education before the 19th birthday makes no difference to UC child element. See link below and scroll to the bottom.

https://www.entitledto.co.uk/help/child-over-16

As he claims PIP then he can claim for UC in his own right, even though he's a student. If he doesn't have the capacity to manage his own finances then you can become his appointee and make the claim on his behalf. This way you're responsible for his claim, filling out forms, ringing DWP, sending evidence to support a claim, reporting changes etc. It will also mean you'll become his appointee for the PIP claim too. See link.

https://www.gov.uk/become-appointee-for-someone-claiming-benefits

northwestmum2 · November 2018

Theyre total idiots in job centre- my son gets a higher rate PIP standard on mobility- BUT hes STILL in full time education till next summer(hes just turned 20)yet hes still had to come off child tax credits& child benefit even though hes still in college- so we started the universal credit treadmill- a lady said he doesnt need fit notes nor need to come in again as hes on PIP& at college(hes got CP&OCD) BUT we had to go again where a stupid young guy (whom i had to tell him thats what is on website-)decided he still needs fit note(GP already said he doesnt, as that will make him unfit for college too)where he said "oh maybe dr thinks he'l shirk college-gps known us 7yrs he knows he wouldnt do that.hes on a full time btech course yet the work coach said its 16&half hrs so he could get part time job(he needs to go in college even on 'study days' plus hes redoing english GCE.my son wont speak to people- he only nodded at the work coach- never spoke.I deal with everything for him& i accompany him to all appts etc-HOW does he expect a)him to fit in college&a job?b)an employer who'd accept him dropping his job to go into college&c)an employer who'd accept his mum accompanying him &speaking to him for my son?The FULL TIME COLLEGE IS CONSIDERED FULL TIME COURSE EVEN FOR PART TIME HOURS! Are these work coaches idiots or something?And yes we have also lost about £700 a month in benefits.

kellz · November 2018

Its just totally wrong i really can not get my head around it , my cares was stopping for my daughter dec 17 due to her dla swapping to pip witch i had to appeal in the mean time my income support was stopped so i contacted cares and asked if they could swap it over for my son as they were both on disability explained that her pip was going threw court they said that should not be a problem i received a letter 16th aprial 18,saying they have exepted the swap and they back dated it to the day befor my daughters was due to stop dos tha my cares started from the date my daughters was stopping .

kellz · November 2018

As for my son im still no better as everything im telling them they just not haven it so the managaer of the job center has asked me if i could give her till friday as she did not know much about the ehc plans so more waiting i just really dont know were to go from there now as i can not live of £600 a month right ontop of christmas my gp was about to send me to hospital yesturday as im going threw that much anxiety its caused low pressure on the brain iv come to far battling my own illness to go into hopital to have more fluid drained from my spinal cord from my brain my kids need me my bloodpressure was that hight i had a reaction off the new treatment i started on friday i just can not deal with the stress its just awful its bad and heartbreaking as a mother haven children with disability's it breaks my heart every day the struggles they go threw each day without being denied wot there entitled to sum ppl dont know how Lucky they are us mums go threw hell every day seeing our kids my 2 kids are my world i would give everything i have in a heartbeat to have there disability illness taken away so they lived a normal life not haveing to struggle its hearbreaking ..

poppy123456 · November 2018

Child benefit and child tax credits stop once a young person reaches their 20th birthday even when they're in full time education, this is because they're an adult in their own right, you can't possible expect to still get benefits for them at that age.

@kellz as i explained to you in your post the other day, as you claim UC then this is totally different for full time students. Child element of UC stops on the 31st August after their 19th birthday. It doens't matter what you do regarding your child element that you lost, you won't have it back. Your son needs to claim UC with a fit/sick note from his GP because for UC purposes he's an adult in his own right and now needs to claim a benefit in his own right.

Claiming PIP doesn't automatically entitle you to LCW part of UC. Fit notes are still needed from a GP. Claiming PIP just means they can apply for UC, if it wasn't for the PIP students wouldn't be able to claim UC at all.

kellz · November 2018

Hes not 20 untill next july i understand that he will need to sign in his own right as i keep being told from the job center i get that and when tha time comes he will ,i still get his child benifit untill next year its just the problem iv got to be honest is how do u sit there and watch your child whos not the age he is in the head agree to all the stress u/c comes with iv had hell since i was made to claim this benifit when ur past from pillow to post it gets to ur mental state id totaly understand if i had a few kids and was just after benifits but i have only 2 ones 19 and one is 17 due to wot iv been threw with them since they was babys to be honest it has put me off haven any more kids iv had more than enought to deal with iv never in there whole time grown up ask for help in any sort of way up untill now and im so sorry if anyone has felt affended or think bad of me for asking for advice im not one of them parents just out for wot i can get from the dwp so i do apologize if it has came across that way.

poppy123456 · November 2018

The issue is, is that because you're claiming Universal credit the rules are different for full time students and the child element stops on 31st August after their 19th birthday. Child benefit is totally different and not part of UC.

They will always be our children, no matter what age they are but he's no longer a child and needs to claim UC in his own right. I know exactly how you feel because i have a daughter that has autism and a learning disability.

No need to be sorry for asking questions on a forum. I'm just trying to give you the correct advice about the benefits your son should be claiming and what ever you say or do the child element you lost on UC for your son will no longer be able to be paid because of his age.

Does he have a social worker than could help with claiming UC?

Lammy · November 2018

Hello Kellz,

I am totally with you on this as we have also been on the treadmill of UC since August 31st. From my own experience, the DWP staff who are meant to be there to help us are giving conflicting information or in many cases no information at all about further benefits we are entitled to claim for our young so called 'adults' with disabilities. Even the .gov.uk website states that some of these additional benefits are no longer available as of 2017, but that is not true. Your social worker is likely to be as clueless as mine, but she/he may ask the welfare benefits department to ring you and offer advice. If she does this, be sure to have your questions written down ready, because if you're anything like most of us single parents struggling to get what we can for our children (not by any means adults), it is easy to become emotional, and hard as it is we must stay solid for our kids.
I had to ask the DWP for a Work capabilty assessment for my son which decides whether he is entitled to the Limited Capability for Work and work related activity benefit. This could amount to an extra £80 per week for your son. I found it is best to ask for this on the help line because they tend to ignore your journal entries for up to 2 weeks and then they don't answer your questions properly. However this extra benefit may not be payable until 14 weeks after the UC benefit has started. Try and get someone to help you fill in the form you will get in the post because they may decide from the information you provide that that is sufficient to qualify without the assessment.
I too have health conditions of my own so I completely understand where you are coming from. This new system is specifically designed to put us off claiming, I have no doubt about that.
Do let me know how things are going with you. We can maybe learn from one other. I wish you luck. Remember to take care of yourself.

poppy123456 · November 2018

Another thing to remember with means tested benefits and students is that any student loans they may have in the future will be counted as income when claiming UC or any other means tested benefits they maybe entitled to. It was the same before UC was launched.

I know it's very difficult a lot of the time to think of our children as adults, especially when they have a disability and inside their heads they may not think or even act like an adult. My daughter is exactly the same so i know where you're coming from with this. I also have a disability myself so i know how hard it is to look after ourselves and them at the same time. However, in the eyes of the law and for benefits purposes they are adults once we stop being able to claim a benefit for them.

Students and benefits are a minefield and DWP are the best people to speak to when it comes to UC at the best of times. Even worse with students claiming UC.

https://www.disabilityrightsuk.org/how-we-can-help/helplines/disabled-students-helpline

Coping with your own disability and that of your son/daughter is very challenging, i know it was for me. Have you thought about asking for a carers assessment from your local council? I went down this route for my daughter and now she receives direct payments for Support each week. She has a personal assistant (support worker) that takes her where she wants to go and helps with extra things around the home. It's not a massive amount but it certainly helps. I also receive extra money in the direct payments to be used for respite care, so i have extra time allowed for this. When we have a disability our self every little helps. It's made a massive difference to both our lives because now my daughter is able to go out to places she was never able to go to before as she's unable to go out alone and i can't take her myself. Contact your local council for the carers assessment.

https://www.carersuk.org/help-and-advice/practical-support/getting-care-and-support/carers-assessment

kellz · November 2018

Aww thank you ,it really dos mean so much to me to have people going threw the same thing and whom also understands means the world and ur kind words i will keep u updated on this and also u all take care ur kind words and advice mean the world.

mommysteph · June 2019

Hi.. my son has turned 18, He has pip enhanced for both care and mobility. The college refused to accept him back last year as he doesn’t speak and said that all the courses required him speaking. We have been told to get an education health care plan, which isn’t easy to get either once they leave school. But it’s being worked on. I gave out to the council as it’s their college and their plan and now have been sent a form for reduced council tax as he has a Carer. As for the UC I was told he could apply but I know it’s going to send him straight into melt down , already I had to explain he didn’t use the phone and had people even asking if he still had autism. Also have a son with ADHD who I had to home school in the end due to seizures. And he is just about to turn 16 next month. The goverment really needs to sort something other than UC for autism and disabilities. Hard enough to get the pip as it is,

Chloe_Scope · June 2019

Hi @mommysteph and a warm welcome to the community! Thank you for sharing this with us. I agree, it can be incredibly difficult to get UC. Do you need any support to get an education health care plan for your son? We have an education board which will be able to help if you post on there. Please do let me know if there is anything else we can do to support you

Autism and Universal Credit

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