Desperate and in need of help — Scope | Disability forum
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Desperate and in need of help

moi1703 Member Posts: 5 Listener
Sorry this is going to be a long post as I need to explain things and it's very complex.  For years before I even knew my current husband I got incapacity benefit, at least 2000. in 2008 I claimed DLA (got middle care, high mobility) as I was getting sicker I met my current husband in 2008 he eventually moved in with me at,  he was on the sick from work at this time.  He became my carer as I was getting sicker, in and out of hospital constantly and surgeries, also meant he could help look after my 2 kids who are on autistic spectrum etc as their dad didn't bother and I have no one to help nearby. 

At some point my incapacity benefit, income support etc was changed to ESA this was at some point between 2008 and 2010 I think.  I've always been in the support group I do remember though having to go to job centre for a few interviews but I couldn't work out why neither could the person doing the Interviews.  I've also never had assessments for ESA.  anyway until last week I just thought everyone who was incapacity benefit got put on income based esa.  Forward wind to a month ago. 

My husband is my carer, I now get enhanced PIP mobility and care, I can't leave the house on my own, am very ill with quite a few severe things.  My mortgage interest relief stopped in March was only £80 a month max but helped.  My son is now 19 and starting uni, any money I got for him stopped end of august.  My daughter has turned 16, I get DLA for her as she has a lot wrong but at 16 you have to apply for PIP, im her appointee. 

My daughter has severe mental health issues as well as physical issues, she is in complete denial about everything and if she even sees she's on autistic spectrum written down or mentioned she denies it but also goes and self harms more so there is no way I'll put her through a f2f assessment so expecting to lose any money for her. At this point we realise we aren't going to be able to pay the bills. 

My husband is offered a job,  the money is rubbish 360 net a week but possibility of overtime, there will also be 50 a week coming off that for several months for equipment he has to buy through his job.  He started a trial on 30th August. A week later decided to stay.  I've been trying to phone ESA to tell them then I'll tell tax credits but there's  never an answer.  So I'm worried I'm going to get into trouble but I have been trying to ring them.  I've been on phone an hour at a time just waiting and it's costing me a lot when I don't have the money. All this plus my daughter condition worsening and son and my health are really stressing me and making me sicker.  I also have something wrong with  my memory, for past few years and have had lots of tests the past 6 months which have confirmed this, I'm now waiting to see a  neurologist for confirmation as to what my condition is but it's making all this much harder to deal and very stressful,  confusing, my long term memory is,  ok short term is horrendous.

Someone from carers has been in touch with someone cos they see I need carers in with my husband no longer being here during day and I'm waiting to hear from adult social services about this.  I've done all the benefit calculator things but our situation is so complex with so many different scenarios including UC which  doesnt come in until next year at earliest.  My 2 main things are my husband doesn't get paid until the end if the month so we will have no income at all.  I presume benefits stop straight away, is this correct.  is there anyway of getting some money to cover bills and food until his wage comes in. 

My son is about to start uni and needs money for travelling,  food, equipment etc until his student loan comes in,  my daughter has just started 6th form and needs monety for equipment etc and they have brought a new very strict 'dress code 'in and I need to get that it's going to cost at least £200 and I have no income.

Finally I've just found this out with looking into things now because I was on  incapacity benefit for years when they transferred me to ESA should I not have gone straight onto contribution based with a income based top up.  Have they made an error,  how do I rectify this as if I can get contribution based esa it will really help the financial situation. Plus i think im entitled to it.  I do know that my NI credits have been paid. 

I feel very scared, confused and desperate.  I know if ESA have made an error it will be horrendous to get it sorted and can they even change it back to contribution based. Can anyone help, is there anyone who specialises in this sort of thing that can  help.   please don't say CAB I know some are amazing but  ours are rubbish, they gave me wrong info and when i went with friend cos she was splitting from husband they just read stuff off internet and gave her wrong in, think I need someone who specialises in this who could tell me what to do or do it for me  because of my memory issues.  I'm always such a strong positive person but at the minute I'm crying all the time and whenever I talk on phone I cry.  thank you for your help x


  • wilko
    wilko Member Posts: 2,457 Disability Gamechanger
    Firstly calls to DWP are FREE as they 0800 numbers 
  • moi1703
    moi1703 Member Posts: 5 Listener
    I have been trying to since last Thursday and will continue to try but I need advice to x
  • poppy123456
    poppy123456 Member Posts: 31,472 Disability Gamechanger

    A long post but i'll try to help the best i can. Those that transferred from IB to ESA were placed on Contribution based ESA. However, has your husband always worked or are you claiming ESA as a couple? CB based ESA is £110.75 per week but as you transferred from IB then you may have a few pounds extra as a transitional protection but if your money is approximately £110.75 per week then you're not claiming as a couple. Or, check any recent award and it will tell you what you're claiming. An Income Related top up will depend on circumstances and household income. If your husband had always worked then you wouldn't have been entitled to the top up.

    You say your husband was your carer, did he or does he claim Carers allowance for looking after you?

    Your son in uni, unfortunately there's nothing you can do about the money for that, student loans first payment isn't paid until after the student has enrolled into university, payment is then made a few days after that. Most students have no option but to look for part time work alongside their student loan, otherwise they will struggle to live. As Christmas is just around the corner, shops will be advertising for staff now.

    If your daughter is still in full time education then you should still be claiming tax credits and child benefit for her. If she is and you haven't told HMRC then you'll need to tell them the college she attends and the name of  the course she's doing then your money for tax credits and child benefit will continue providng she remains in full time non advanced education.

    SMI for your mortgage has now changed and it's now a loan but they should have contacted you regarding this. Hope this has answered some of your questions.

  • poppy123456
    poppy123456 Member Posts: 31,472 Disability Gamechanger
    Try ringing HMRC first thing in the morning when they open as this is often the best time to ring. You will need to report any changes as soon as possible. Changes can also be reported online if you have an account.
  • moi1703
    moi1703 Member Posts: 5 Listener
    Hi Poppy thanks.   Before i was transferred over to esa i was getting incapacity in my name and income support. My husband got carers.  My husband stopped working in 2009 and claimed and got carers allowance,  i claimed esa for me and at some point they appear to have changed it to me and him.  They admit mine is primary name on it and his is an add on.  My husband has never claimed anything else apart from carers.  In all the time i be been on was it's been support group and I they only sent me a form to fill in at changeover and one other time.  

    My son is on AS but does have a job he works one day a week, would do more hours but they aren't available,  the fact he copes with this is amazing,  he's hoping to get a part time job in the uni.  

    My daughter is in full time ed and I get both ctc and cb but tgese gave reduces great with my son leaving education.

    They contacted me about the mortgage and loan, I turned it down I don't want a loan.

    Thank you again for your help x
  • poppy123456
    poppy123456 Member Posts: 31,472 Disability Gamechanger
    Thanks for the information. As you are claiming ESA as couple then you will need to ring ESA and report your husband is now working, if you don't then you'll continue to be paid as a couple and the over payment will continue to increase. I don't know if your ESA is part Contribution based now because you were claiming as a couple. Checking a recent letter from them will tell you for sure the break down of all payments you receive from them. You do need to keep trying to ring them because all changes in circumstances need to be reported. If it's still part CB then you'll be able to keep at least £110.75 per week, the rest will stop and anything you received since your husband started work will need to be repaid.

    As he's also claiming Carers allowance then he needs to ring them and tell them he's now working full time because he won't be entitled to claim CA anymore. Those that work 16 hours or more per week can't claim Carers allowance. He'll have an over payment for that from when he started work.

    When benefits stop because a child is no longer in full time education then it's a struggle to start with yes. If he lives at home with you while he's at uni then he'll be able to contribute something from his student loan.

    If you were claiming council tax reduction before your husband returned to work then you'll also need to ring your local council to report these changes.

    As he now works then he maybe entitled to some working tax credits but this will depend on income.

    Trying to get through to DWP is a nightmare and a lot of the time people are kept waiting for up to 1 hour, so i've heard so you will have to keep trying otherwise your situation will get worse.

    I hope you are successful with getting some help with your health from social services because i know that's often a nightmare too, especially with the funding cuts in most areas. Good luck and i hope everything works out for you.
  • moi1703
    moi1703 Member Posts: 5 Listener
    Thanks poppy.  I've got through to ESA after an hour.  I spoke to a really lovely man.  Firstly there is an issue making any amendments because the mortgage interest rate help is still showing.  That should have been taken off in April as they new I wasn't getting the loan.  This stopped the man putting amendments through.  Because we were effectively better off on income based ESA they put us on that but kept my contribution based in reserve.  Now my husband has started work it will switch back to contribution based for me.  If there is any repayment because he started on 30th it would be small but he has made a note to say I've repeatedly tried to phone them since last Thursday so if they try to claim it back appeal. 

    My contribution based esa has been marked down as starting from 30th.  

    I now need to phone ctc and get that sorted .  I feel a bit better as the CB ESA will make a huge difference.  
    Just had a phone call from adult social services they are coming to see me tomorrow.

    Still dont know how we will cope until end if month but feel a bit better.

    Thanks again x
  • poppy123456
    poppy123456 Member Posts: 31,472 Disability Gamechanger

    I'm glad you finally got through to ESA and were finally able to sort that out. I thought the CB would still be active because once you claim this you're always on it and the IR is added depending on circumstances. At least you'll know you'll still get £110.75 per week with a little extra maybe because your transferred from IB.

    Glad to hear you're getting a visit tomorrow and i hope they'll be able to help you.

    Good luck and i hope everything works out for you.
  • newborn
    newborn Member Posts: 747 Pioneering
    Best wishes with everything.   Is there a way to get second hand stuff for daughter?  
  • moi1703
    moi1703 Member Posts: 5 Listener
    I'm afraid not Newborn, it's brand brand new dress code for 6th formers, it's very strict we weren't even informed about it until we were actually in the summer holidays
  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,793 Disability Gamechanger
    Hi @moi1703, glad to see you've had some good advice from the community already! If you're still feeling overwhelmed and feel you would benefit from speaking to somebody over the phone, do feel free to call our brilliant helpline team (free) on 0808 800 3333, or find other ways to get in touch here.


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