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Why is everything such a battle?

WholeSumMum

I am currently going through a divorce, also trying to instill budgeting and saving tips with my 20 year old Austistic and ADHD plus other issues son. Does not understand at all, still insists on washing his clothes via the labels, unable to see how hair shampoo can be used a body wash. We currently switch off as much as we can do. He needs light on and radio on to go to sleep each night. Struggling to get myself properly and timely NHS checked out physical and mental health wise. 3rd or 4th PIPs for myself now having to go to appeal / tribunal over a year since starting this one now. UC in general is really vexing me, having to repay so called WFTC overpayments and having to have my Carers Allowance taken off my Carers Element. Unable to get any answers from work coach unless it actually relates to them harrassing us for fit notes. I feel like I have not come out of lockdown at all. The confusing and inability for DWP etc helpdesks to explain how, why there are differences in assessments via phone and in person and why no consistency regarding extra payments and backdating payments. Even the so called Supported Internship my son will have to attend in September does not take into consideration the fact that he requires full time daily 1 - 1 support which starts and finishes at home and not just during the training day. Trying to get ourselves on various assessment waiting lists via GP is a struggle. Being unable to actually see on our NHS portals all our referrals, appointments, hospital and otherwise is causing greater stresses and anxieties as we then have to start to chase up things. For example, I had x-rays on both hands and hips / lower back at the same time, have osteoarthritis, however I have seen the hand therapist not one for hips etc. Thought there was just a back log. Phoned up a few days ago to find out that apparently I am on the waiting list but have not been referred (not sure how that works out). Having to advocate for myself, my son and also my youngest child who has other issues as well as mental health issues like myself and son. No regular proactive help from anyone on a daily basis.

Never understood inflation. However, a friend of mine explained it thus "the act of raising prices on things unnecessarily". Think that explains a lot. I understand the workings of supply and demand. Being a "single" parent with own and carers needs (still not being met yet) as well as advocacy / proxy tasks is continuing to make me feel like I am a modern day slave. Just expected to do and battle through and for every single little crumb of help and support whenever it gets approved, without having any resources or help to recharge my own batteries and needs.

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poppy123456

WholeSumMum said:

having to have my Carers Allowance taken off my Carers Element.

That's not quite correct. Carers allowance reduces your whole UC £1 for £, not just the carers element. You need to make sure your maximum UC entitlement includes the carers element.

This is exactly the same with the old legacy benefits. If someone claimed Carers allowance as well as Income Related ESA/JSA and Income Support the carers allowance would always be deducted in full. If it wasn't then you would be receiving the same payment twice.

WholeSumMum said:

Unable to get any answers from work coach unless it actually relates to them harrassing us for fit notes.

If you reported a health condition then yes you will need to send fit notes without any gaps until a decision's been made on your work capability assessment.

At moment as a carer you will not have any work commiments. If you are found to have LCWRA then you won't be able to receive the carers element at the same time as the LCWRA element and you will only receive the higher amount of £354.28 per month. If there's money owed because the decision took longer then you will be owed the difference between carers element and LCWRA.

If you're found to have LCW then you won't receive any extra money each month.

WholeSumMum said:

The confusing and inability for DWP etc helpdesks to explain how, why there are differences in assessments via phone and in person and why no consistency regarding extra payments and backdating payments.

The UC helpline is not really there to give advice regarding any work capability assessments because it's not their job to do this.

Work capability assessments take place either by phone, face to face or video call.

If you need advice regarding money that's owed then please give some further information regarding this and i'm sure someone will help you further.

WholeSumMum

Issue I have is that my son got his award letter AND a number of letters about the extra monies in the same day. His UC is now updated and backdated payments done. However, I have still not heard anything about my own UC50 award payments. Issue was also told I could phone Assessment Centre for full copy of our assessment reports, however, eventually the help desk people said it would be better to put request in our UC journals for the work coaches. Which is what they would be doing.

poppy123456

Copies of assessment reports are sent from UC and not the health assessment providers.

WholeSumMum said:

However, I have still not heard anything about my own UC50 award payments.

Have you had the assessment and are waiting for a decision on that? if so what waS the decision please? Sorry but it's not clear exactly what you mean here.

Tori_Scope

Hi there @WholeSumMum

Just to let you know, I merged your two threads together so that your responses would all be in one place. To respond to this thread, you can type your reply in the comment box at the bottom. I hope that makes sense!

It sounds as though you have an awful lot on your plate at the moment, and I can see how you might feel as though things are getting on top of you a little.

I know that it's difficult to access GP and other medical support services at the moment, but I was just wondering whether you and your children are currently receiving enough support to help you manage your mental health conditions?

If you live in England, and feel you could benefit from talking therapy, you can refer yourself through the IAPT servic e.

Apologies if I missed this somewhere in your post, but have you had a needs assessment from your local authority at all? If not, you can find out how to refer yourself for one on the gov.uk website. This could lead to your local authority identifying whether there's any additional support you could receive to make things a little more manageable at home.

Even the so called Supported Internship my son will have to attend in September does not take into consideration the fact that he requires full time daily 1 - 1 support which starts and finishes at home and not just during the training day.

Have you tried explaining this to the provider of the internship to see whether there's anything they can do to support you and your son?

If you feel as though you need some support advocating for yourself and your children, you could also look into advocacy (Mind).

WholeSumMum

I am extremely overwhelmed. Due to my own mental health issues I am struggling a great deal to read and understand the mega "help pages" on UC. I need these explained simply and properly to me. Also I have regular weekly appointments with Society Inc for mentoring and befriending. I am unable to sort out what I need by myself or for myself and also struggle to help my son and youngest childs needs. One of my main issues of actually researching and following through. I need one place to contact who then helps me through everything. Not sure if any of this makes sense. All I want to do is cry, scream and throw things. Not sure how close I am to an actual nervous breakdown with all this and the extra issues arising.

WholeSumMum

I received my UC50 decision letter as yes I do have LCWRA. Don't remember reading anything about Carers Element being stopped and being given higher rate of UC50 to compensate for it.
No - we are not receiving enough help and support for our own mental and physical health.

poppy123456

WholeSumMum said:

I received my UC50 decision letter as yes I do have LCWRA. Don't remember reading anything about Carers Element being stopped and being given higher rate of UC50 to compensate for it.
No - we are not receiving enough help and support for our own mental and physical health.

The same person can’t receive the carers element and LCWRA at the same time. You will now receive the higher element only and the carers element will stop. See link for confirmation. https://www.entitledto.co.uk/help/Carers-with-limited-capability-for-work-Universal-Credit
Regarding your health and mentioning your struggles. Have you ever referred yourself for a needs assessment? If you haven’t then you can do that here https://www.nhs.uk/conditions/social-care-and-support-guide/help-from-social-services-and-charities/getting-a-needs-assessment/
There maybe some help out there for you.

WholeSumMum

I believe I am on the carers needs assessment waiting list from at least the beginning of last year. Why are the helpdesks there if they are unable to explain things simply eg the tiered monies for LCWRA and other questions? I need a physical person with me to help go through and sort out stuff. There are too many separate organizations. I would have thought / expected more help via my GPs surgery due to the Autism, ADHD, SAD and other issues I have already filed with them. I feel like there is no actual understanding of how these mental health issues plus also my physical ones actually affect the "actions" I am expected to do - phone this place, find out if this form is needed or not.

WholeSumMum

Regarding my current PIPS appeal / tribunal how do I go about getting it through this time? Regarding a Drs input is there a specific form they need to fill in on my behalf with my medical stuff? If so, where do I find it? The CAB lady who did my mandatory reconsideration letter itemized questions with responses plus the number of points which should be awarded - totalling 22. Decision letter still came back and only gave me 4 points for social anxieties. What does it take to get the help and support which is very much needed?

poppy123456

When you ring the UC helpline, it's not their job to give any advice about your claim. They mostly read from a screen and have no knowledge on benefits to be fair.

For your PIP Tribunal evidence from a GP isn't the best evidence to send because they don't know exactly how your conditions affect you. They don't spend any time with you to know how you cook/wash/dress/make budgeting decisions etc etc.

The best thing to do for the Tribunal is to give a couple of real world incidents of exactly what happened the last time you attempted that activity for each descriptor that applies to you. Include detailed information such as where you were, what exactly happened, did anyone see it and what the consequences were.

You can also get some expert advice and support from an agency near you. Start here, put your postcode in and "choose a topic" welfare benefits. It will tell you what's local to you. https://advicelocal.uk/

Tori_Scope

I've sent you an email about this from community@scope.org.uk @WholeSumMum