Disibility Premium Problems

sillysoup

Hello. I have been on ESA with PIP for years due to disibility and so many operations I lost count after 30. I am in the support group. Due to the PIP, I had disibility premium. I live as a lodger under the rent a room scheme.

In September, DWP stopped my disibility premium without informing me. When I queried this, they told me apparently that my landlord had moved in August, which never happened. He has always lived there. We don't know where this information came from at all. Nothing has changed in my situation. 

It took them 2 months for them to send the form about who lives with you. I had to phone 4 times before someone actually filled out the release form for me to get it.

I filled it in straight away and it was received with them 5th Nov.

I have nothing from them since that, despite me phoning every single week. The past month, the person on the otherside of the phone hasn't been able to open the form, so they're guessing that a decision has been made and told me so. But it has been 4 weeks that I have been told that. People who I talk to have left notes for me to be contacted, escalated it, added notes that I am a priority and have done everything they could, but still nothing. 

Then at the start of this week, I get told that the Decison Maker has escalated it out of the ESA to another decision maker. They mentioned something about paperwork I'd get or a phone call, but I've got nothing so far. I obviously now have no idea how to get in touch with this decision maker.

The only reason I can think of is why they didn't make the decision is because my landlord is a bloke and is only a couple years younger than me, as several years ago, I was questioned about our relationship,  even though I have told them repeatedly that neither of us swing each others way and we met at an LGBTA+ group. I was told that if we washed our clothes together, ate together, bought food together, that it wouldn't matter if we wasn't in a relationship, we would be considered as if we was if we did these things, so I have always made sure we have never done that. (We eat a different times and I don't like people touching my dirty clothes anyway, so that was easy to avoid doing so.) But I was horrified because I would be severely screwed in that case as I cannot ask a friend to take financial care of me, the way an actual partner would.  We have never been a couple or romantically inclined.

I honestly don't know how to push it through to speed things up as it's dragging so much. I don't know who to turn to because if it wasn't for me phoning each week, I wouldn't have heard a single thing as I've had no paper work.

This is taking a mental toll on me, as Disibility Premium is 20% of what I get in a year and I can't really afford to lose it and give up. And the dreaded migration letter came through the post, I've got until April to sort this out as I know if I apply for universal credit with the premium that amount has to be protected through transitional protection. If I apply without, I am losing that 20% as I don't think they'd protect something that I wasn't getting at the time, even though I should.

As January ends and February starts, that will make it 6 months since it was taken away. It is a struggle to go without that money, especially with winter heating bills being higher and such lark. I am on  a time limit and I am seriously running out of time. I honestly don't know what to do to push anything forward and feeling hopeless. If I end up having any problems with them saying anything other than yes, I will run out of time.

I will be seriously muddled if I have to apply for UC without DP as it's a struggle coping without my DP right now.

I am so upset. I did nothing wrong nor changed anything, yet I feel like I'm being messed around with and it almost feels on purpose. I haven't done anything wrong, yet I am so worried and frightened about this "escalation" business as that's scary. 

Does anyone have any advice? If you have any questions, I'm happy to answer. I know it's long so sorry about that, but it's a story that can't quite be summed up in a paragraph. Thanks for reading and have a lovely evening. 

Rubyroobs

People generally only get the severe disability premium if they live alone ( unless the person they live with is also in receipt of a disability benefit) which you don't. I think there may be some exemption if the person is a landlord and therefore provides no care for you so you should be treated as living alone. I think it's a bit of a grey area to be honest. Could you consider making an official complaint highlighting that it is causing you hardship?

Spoonie_Turtle

It's not a grey area

"You can live with someone and still receive Severe Disability premium. But everyone you live with must meet 1 of the criteria for:

• age
• a landlord or tenant
• …

A tenant or landlord

You are still eligible if they are either a:

• commercial tenant or lodger
• landlord who is not a relative"

https://www.scope.org.uk/advice-and-support/living-with-someone-severe-disability-premium

OP I don't know how best for you to proceed.  I often see more experienced members recommend people get their MP involved to give DWP a kick up the derriere.

sillysoup

Spoonie_Turtle said:

It's not a grey area

"You can live with someone and still receive Severe Disability premium. But everyone you live with must meet 1 of the criteria for:

• age
• a landlord or tenant
• …

A tenant or landlord

You are still eligible if they are either a:

• commercial tenant or lodger
• landlord who is not a relative"

OP I don't know how best for you to proceed.  I often see more experienced members recommend people get their MP involved to give DWP a kick up the derriere.

Yes. I am classed as living alone. I am not related to my landlord. I've been getting DP for maybe 5 years ish? And they know I'm a lodger who lives with a landlord, so I wasn't doing anything wrong getting it.  They were the ones to originally contacted me after I got both higher elements of PIP and after telling them the above, they gave me backpay + DP. 

Thanks for the support. It's scary opening up and makes me feel vulnerable. 

teaselMay

OP when I had a situation related to a bit of my UC not being paid purely through a computer issue and me getting nowhere over several months I emailed my MP.

The money was in my account within the week. It's the only time I've ever contacted my MP.

That was actually the transitional protection from the same premium, it was clearly a computer issue but I couldn't get anyone to hear me.

From what you've said it sounds as though it's clear cut that you're entitled to it, perhaps there was a misunderstanding of your situation and now its got tangled in the system. Write a nice concise email to your MP outlining what's happened, what you've done to try to resolve it and the hardship that it's causing. Most MPs have times when you can meet with them ('surgeries') you could go along and explain if that would be easier.

TimeLord1

You say' it stopped in September 2024 did they write to you regarding the claim?

Robbie64

I also suggest you contact your MP. Based on what you've posted, you definitely qualify for the SDP. As long as it's a commercial tenancy and yoiu have your own room then you should be classed as living alone.You aren't living as part of the landlord's household in your circumstances.

sillysoup

TimeLord1 said:

You say' it stopped in September 2024 did they write to you regarding the claim?

Nope. I only noticed because the payment was different when going through my bank statements. I then phoned them to find out what happened and they told me that a person with the same name as my landlord had moved in August, I told them that was wrong. We then did one form through the phone (The basic one), then the second form (The one about who you live with) was supposed to be sent out, but wasn't for 2 months. I had to phone several times until an agent figured it out that it needed a release form and then I finally received it. I haven't had any correspondence to my house about this other than that form. 

sillysoup

I took your advice to go to my MP and here is the letter they sent to them.


There is a falsehood in their letter after they stopped my money. They did not contact me nor send my any forms of their own accord.  I contacted them in September to see why my money was stopped and I filled out a form on the phone then. I was then told to wait for the living arrangements letter. I waited two months, atleast 5 phone calls to the ESA line to get this letter as I was told they would send it to me but no one actually filled out release forms for it so I never received it for two months. I posted it the same day it was arrived in November and they got it officially on the 5th. Other than them sending me this form, I have had no contact from them at all. It has been me phoning each week to try and get some information. I am the one chasing them, they haven't sent a single thing to me of their own volition. It also seems the info I was given originally on the phone was not right as they told me they stopped it because my landlord moved in, when they had always lived there rather than it being time for a review. 

I have had reviews before in the past, but they have never stopped my money previously. It seems rather harsh, especially considering my circumstances hasn't been changed. I could understand if I had change of circumstances resulted in a pause but I haven't. I don't think it's quite fair. 

I'm also not sure why it has taken so long to organise someone to contact me to arrange an interview which I am more than happy to do, whether by phone or person, especially as we've reached the six month mark. Despite it being urgent, it is legit an hours job for the interview on the phone or one minute phone call for them to arrange an interview time with me. They received my form on Nov 5th. So took 2 months for them to decide.

And do you think I have heard anything from them this week...of course not. The person who is working for my MP told me to reply to them if I haven't heard anything this week, which I will be doing so tomorrow. 

Sigh. But thank you for your advice, hopefully things can get moving now.