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Are there any other options?

JPW Member Posts: 18 Listener
edited August 2020 in Universal Credit (UC)
At 48 I was diagnosed Autistic and then set about trying to understand my life and the mistakes that made me.
Unfortunately having worked in care for 24 years didnt automatically qualify me for support via colleagues and work so I was forced or felt inclined to leave a job I enjoyed. I had problems with discipline- nothing major just words and commnets repeated and behaviours ( mostly linked to Autism may I add) Apparently I was a 'problem' in the team yet in 8 years doing other jobs at the same firm I was able to manage myself and not attract such derision. 
Anyway I complained after I left that I was discrimimated against whilst working and won round one recently after a year. I am waiting for some form of compensation or apology I cannot go back.
I still work for the same firm albeit 12- 15 hours a week and a separate entity and do the job fine. So it's not me after all. I also volunteer and do a small 4 hour post as encouraging others to work on a greenspace. This fills my week and is manageable.
What isn't is my financesI just get by. I claimed ESA which entitles me to £74 a week for 12 months after which I have to wait 12 weeks to reapply. I just get by with this for 2 of us. My partner has anxiety issues and does a small cleaning job for £30 a week to keep her motivation.I earn £140 in total a week to stay withing permitted limits for ESA across both jobs.
I was refused PIP and there are no other help options for a working disabled person long term like me or is there something I missed?


  • poppy123456
    poppy123456 Member Posts: 31,476 Disability Gamechanger
    HI and welcome,

    Have you looked at claiming Universal Credit? You can claim this as well as work, if you're on low income. As it's a means tested benefit, if you live with your partner then you'll need to claim as a couple. If you have a limited capability for work then you can send in fit notes from your GP to start the Limited capability for work process off (like ESA but a different name) As you don't claim a disability benefit providing you're working less than 16 hours per week then a fit note will start the process off.

    You will need to put both of your details into it, if you live together. Whether you'll be entitled to anything will depend on your joint income. Your earnings will reduce the amount you're entitled to by 63% for every £1 you earn each monthly assessment period.

    Once you're assessed for the limited capability for work, if you're given LCWRA then you'll receive extra money from the 4th month of your claim from when you sent in the fit note, so don't delay sending that it, once you've claimed (if you're entitled)

    The assessment process is the same as ESA work capability assessment. If you're given either LCW or LCWRA then you'll have a work allowance each month which will mean you'll be able to earn a certain amount of money before you start to see the 63% deductions.

    Regarding PIP. It's not awarded based on any diagnosis. It's how those conditions affect your ability to carry out daily activity based on the PIP descriptors. You can certainly apply again BUT using the same evidence you previously used will very likely see another refusal. If you are refused then i'd advise requesting the Mandatory Reconsideration the Tribunal because the chances of success are fairly high.

    If you do reapply then make sure you fill out the form with as much details as possible about how your conditions affect you.Using real life examples of what happened the last time you attempted that activity for each descriptor that applies to you.

    I hope this helps and if you have more questions please do ask.

  • Cher_Inactive
    Cher_Inactive Posts: 4,400 Scope online community team
    Hello @JPW and welcome to Scope's online community.  Thank you for sharing your story with us.  I'm sorry to hear about the difficulties you have faced at work and financially.

    I see @poppy123456 has helpfully explained to you about what benefit options might be available to you.  Let us know if you found it useful and if there is anything more we can support you with.
    Online Community Co-ordinator

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  • chiarieds
    chiarieds Member, Community Co-Production Group Posts: 12,478 Disability Gamechanger
    Hi @JPW - I just wanted to welcome you to the community, as I see you have already received great advice above. Kindly let us know how you get on, & chat here any time. :)
  • steve51
    steve51 Member Posts: 7,153 Disability Gamechanger
    Hi @JPW

    Good Afternoon & Welcome it’s great to see that you have already meet a number of our members.

    Please let me know if you still need any further help/support??

  • janer1967
    janer1967 Member Posts: 16,537 Disability Gamechanger
    Hi @JPW Welcome to the community glad you have joined us and find the excellent advice given of use to you

    I hope you find you are entitled to some additional benefits as it cant be easy living off the amount of income you are getting
  • JPW
    JPW Member Posts: 18 Listener
    Thank you for the welcome guys.
    I send in fit notes with my ESA claim. My partner has issues with accessing help- we manage so shes happy to carry on as we are. I fear we just adjust each time my income drops and i have few savings now as they went July 19 to feb 20 waiting for ESA.
    The UC problem is my rented property. Only one mind!- which is a real burden, has been the whole 18 years. I have tried to sell numerous times to offset my personal mortgage but ....anyway there is a good tenant now thank god and it just pays it way now.
    UC take the income/profit from it after deductions and the capital value or equity- same as housing benefit and councul tax benefit.
    Basically we qualify for nothing even though on paper it appears we have income that is either spoken for in mortgage payments or hypothetical as in if we could sell tomorrow for the market value.
    There should be a designanated disability working benefit for those that need support while working and fair.
    All the other subsidies or help require other entitlements, such as pip opens up this and that etc. I don't qualify for pip, its ableist criteria doesn't allow for mental health or Socially defined disabilities.
    I have lobbied the MP for a change in the working support of Disabled workers.
    I exist at present, i get by we get by, If my missus could work more she would but I cant force her thus ESA is the only benefit that works.shame its only 12 months though.

    Thank you all the same, I appreciate the listening aspect of this.
  • poppy123456
    poppy123456 Member Posts: 31,476 Disability Gamechanger
    edited August 2020
    Unfortunately, UC is a means tested benefit and capital does affect this, which is why your property counts with the equity.

    Regarding your comment about PIP and mental health and social disabilities, i couldn't disagree more with that. People claim PIP for these reasons all the time. My daughter is an example of that. She has Autism, learning disability and social anxiety disorder and she's been claiming Enhanced for both parts since 2017 and i've never had a problem claiming for her. Infact for her last review she had a paper based assessment, no face to face assessment was needed because they had enough of information to make a decision without it.

    There's also members that post here on the community that have been awarded successfully for mental health reasons.

    It really does help to have some understanding of the PIP descriptors, what they mean and the criteria. Starting a claim with your eyes shut "so to speak" really doesn't help at all. Yes of course there will always be people that have a disability but don't qualify for PIP because if you don't fit the descriptors then you won't score the points for an award.

    Start by having a read of this and it may just help a little.

    Your ESA claim. The reason you're only entitled to it for 12 months is because you've either been placed into the WRAG each time you've applied and in this group it's only paid for a maximum of 1 year. Or you've been found fit for work after the assessmenrt.

    However, if you were placed into the Support Group then it's paid for as long as you remain in that group. Although working can go against it if the work you do contradicts the reasons why you're claiming.
  • JPW
    JPW Member Posts: 18 Listener
    Thank you your comments they offer me a small comfort. 
    As a late diagnosed I have not really understood what affects me day to day. I know where my issues are but they dont always fit the criteria of PIP and I present very articulate so my demeanour belies my struggles.
    I will try again for the sake of it as anything helps.
    Can you explain WRAG with reference to ESA as I am so confused, new style, income related, contribution related its not well explained in any gov material or the job centre. Ive paid stamps for NI for 24 years as a carer I just would like some recognition for 24 years of getting this far without help at a time when i am struggling. 

  • poppy123456
    poppy123456 Member Posts: 31,476 Disability Gamechanger
    You're welcome,

    It's difficult to give any advice regarding PIP without knowing exactly how your conditions affect you. The majority of people that claim PIP claim is successfully first time without any problems at all. If you're not successfully awarded then i'd always advise requesting the MR followed by Tribunal, rather than start another new claim because this never helps. Start by having a read of this

    New style ESA has replaced the old Contributions based ESA and is based on your NI contributions in the previous 2 tax years. Income related ESA was/is means tested but it's no longer possible to start a new claim for this for anyone except those that are claiming a severe disability premium in another benefit.

    WRAG is just one of the groups that you can be placed into once you've been assessed. Basically what it means is they acknowledge you have a disability that affects your ability to work so you won't be made to look for work but you'll be expected to prepare to work sometime in the future. Appointments at your local job centre (in normal times) maybe needed when in this group and these are otherwise known as "work related activities" explained here

    Support Group (ESA) is the group that those are placed into that do not have to do work related activities like those in the WRAG and being in this group means your money will continue for as long as you remain in this group.

    There's certain criteria you need to meet for both groups and these are called descriptors. You can google search both groups for more information. I don't want to put more links becauase it could start to become information overload.

    You say you were previously claiming New style ESA but it was only paid for 12 months, by this i'll assume that you were in the WRAG? To claim New style ESA now you'll need to have paid the correct amount of NI contributions in tax year April 2017 to March 2018 and April 2018 to March 2019 unfortunately, paying your NI for 24 years doesn't help.

  • JPW
    JPW Member Posts: 18 Listener
    Thanks maybe i'm confusing this again.
    I applied for ESA in JUly 2019 and was refused I appealed etc etc.
    eventually January this year I managed to get my income to fit the criteria.
    I work 15 hours at £9.30 as a carer.
    I was working over 30 hours in 2 jobs all over the place, then diagnosed and then had work issues in one of the jobs(same firm) left that job tried to get another job post diagnosis failed miserably and got so down so concentrated on the one job as didnt want to lose that either.
    was very skint for 9 months lived off savings etc until ESA was successful.
    Dont know which group im in to be sure assumed wrag but have no appointments to attend. just submit fit notes every 3 months from GP.

    the pip i appealed went MR and went to tribunal stll failed. Will defo try again
  • JPW
    JPW Member Posts: 18 Listener
    I was 48 in 2019 when disagnosed
  • poppy123456
    poppy123456 Member Posts: 31,476 Disability Gamechanger
    edited August 2020
    Which group were you placed into by the Tribunal? If you're in one of the groups you do not need to send in anymore fit notes. If you're not sure then the Tribunal should have sent you a decision letter have a look at that and it will tell you which group.

    Do you receive any money from ESA every fortnight? If you don't then when did that stop? Sorry for all the questions but without the information i can't help you further.

    The most important thing right now it to find out which group (if any) you were placed into by the Tribunal because this will make a huge difference to whether or not you can reapply in 12 weeks.
  • JPW
    JPW Member Posts: 18 Listener
    Thanks again for being patient.
    The tribunal was related to PIP.
    Im still waiting for a tribunal date for ESA.
    How do I find which group im in?
    It just says from 21st January I get £73.10 then from April it goes up. They havent asked me attend anything face to face since then just asked for 2 fits notes the 3rd is due now but they didnt text me or ask this time.
    Oh and in 365 days it stops because thats maximum days for contribution based ESA 
  • poppy123456
    poppy123456 Member Posts: 31,476 Disability Gamechanger
    edited August 2020
    No problem. Oh i see, i thought the Tribunal was for ESA that's why i was getting really confused. So sorry about that. Probably because you were talking about ESA and PIP and then you said you would be able to reapply again after 12 weeks, which lead me to believe it was ESA you were talking about.

    Lets start again lol so your PIP Tribunal i'm assuming you didn't win, is that correct? No award?

    Now your ESA, as you haven't had your assessment yet for this then you won't be in any group....yet. You're still in what's known as the "assessment phase" If you haven't yet filled out the work capability assessment form then you will eventually need to fill that in and return it with all your support evidence.

    Once that's received back you'll most likely need an assessment as most people have them. Under normal circumstances it's usually a face to face but because of Covid19 these are still suspended and telephone assessments have replaced them.

    Remember that the work capability assessment is about your ability to do any type of work and this is what they will assess you for. It's about the work you can do and not the work you can't do.

    If you're placed into the WRAG (work related activity group) you money will stay the same as it is now and it's paid for just 1 year (365 days) and then it ends.

    If you're placed into the Support Group then your money increase to £113.55 per week from the 14th week of your claim (backdated if the decision took longer than this, most do) and it's paid for as long as you remain in that group. There's no time limit in this group.

    As you are working and claiming ESA this is known as permitted work. As i previously mentioned even though you can do permitted work and claim ESA if the work you do contradicts the reasons why you're claiming ESA then it can go against you once the decision's been made.

    Sorry it took so long but i hope i've helped just a little.

  • JPW
    JPW Member Posts: 18 Listener
    Thanks again, yes we got there.
    I assume everyone knows my story its like I think my telepathy can send the info and save time. 


    anyway yes i was refused and got no pip. I sort of gave up as the system didnt seem to want to support me and was resigned to trying to find another job but Ive found the stuff i do now is enough if that makes sense.
    I would have to give up everything that has worked for me for the last 2 years. The 4 hr partime greenspace role, the volunteering and my 12 hours community care work/job. I also run a neuro diverse group now each week. I decided i need to slow down as my age is catching me up at 50. Yes I can still run around like a kid at times but suffer thenext day, I can drive for 6 hours but suffer the next day, i can work hard but suffer the next day, i can write all day but suffer the next day. recovery time is longer which is annoying. If you imagine I dont just do a job I live it and breath it when i get into no matter how much time it involves. It something that makes me, me i suppose but its tiring because I have no regulation.
    I digress- so after my ESA year I can reapply for ESA then after 12 weeks?

    The system expects you to cut your loses for 3 months- Like I said Im not the only one seems 50 is the magic number or Auties alike to be thrown on the scrap heap.

    you are a star thank you forgive my negativity - you have given me more helpful information than the dwp ever could.x

  • poppy123456
    poppy123456 Member Posts: 31,476 Disability Gamechanger
    You are most welcome, it's what i help on here for. My daughter has ASD so i totally understand exactly what it is and the affects it can have on you. Although it is a spectrum and you're all affected differently.  She was also diagnosed late, although not as late as you were. She was 17 but in my opinion, that was late enough and i also fought for many years for that diagnosis. I never ever gave up on her.

    Reapplying after 12 weeks for ESA, yes and no. It depends on what the decision is for the work capability assessment. If you're placed into the Support Group then you won't have to reapply after 12 weeks because as i advised, it won't stop after 365 days.

    If you're placed into the WRAG, then you can request the MR and the Tribinal after that, providing you think you qualify for the Support Group because otherwise there's very little point in going through all that if you don't qualify for it. If you think you do then the MR/Tribunal route will be worth it,, otherwise it will be a viscous circle.

    If the worst happens and you're found fit for work then you can't reapply after 12 weeks unless your current condition has got a lot worse or you're applying for a completely new condition. See link.

    My advice would be to do some research into the criteria or get some advice from either welfare rights or the likes,, if you have one near you. This link will help with that

    Regarding your PIP. It's not awarded based on a diagnosis, it's how those conditions affect you. The Tribunal has a very high success rate, even higher if you have representation. You could re-apply but change how you apply because if you use the same evidence you did the first time then you're very likely going to see yet another refusal. I won't go into details now but if you do decide to try again then please do post back here and i'm sure someone will give you further advice.


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