The benefits trap. Am I missing something?

[Treepigeon]

Hi. Just looking for some thoughts / advice.
Sorry if this is a bit long.

For context I am autistic with ADHD and complex mental health issues who developed ME/CFS during the pandemic. I used to run my own businesses but have been unemployed LCWRA and pip since 2020.

I am desperate for my own self esteem to work again. My attempts to accept my situation have failed. I am miserable not working. I feel like a burden and I am constantly terrified of having to deal with anything to do with my claims as I found the claiming process so demoralising like I was accused of lieing all the time. I get panic attacks thinking about renewal. It has been however a challenge to think of any job I could sustain with my complex disabilities.

Working with a charity that helps autistic people match to jobs they could do I have found what I feel like would be the perfect job. It's 16.5 weeks as a low key library assistant that also does the weekly rhyme time with the toddlers. This ticks all my interest boxes and looking at the requirements I think I stand a good chance of atleast getting an interview.

Downside is it's in a different city but a simple commute which normally I wouldn't manage with anxiety but it happens to be on the same route as my parents so luckily this is a familiar route to me. I have been searching and searching for anything in my area for well over a year and have never found anything suitable.

The problem is is that I have about 2ks worth of debt.
Due to this being a 16.5 hour a week job it looks like I would loose the LCWRA element of UC and I think trigger a PIP reassessment which I am concerned I would loose quite a bit due to working in a different city (despite realistically this likely to completely drain me and render all my other awake hours useless)

I put the salary into a wage calculator and then did a benefits calculator. From my understanding once I've factored in everything such as loosing free school meals and the £30 a week travel money etc I would be down by £500 a month. That's a lot.

I just can not afford that. I wouldn't be able to pay my debts at all. My partner has sat me down and said realistically I need to think that this is not a viable option for me as he can't bail me out anything and I just can not afford to be that much money a month down just because I want to work a job that is likely to increase my support needs in every other aspect of my life as I'll be so fatigued from working and traveling.

I feel so deflated. Like am I just trapped on benefits? As it feels like to get off them by the time I've factored in benefit loss I would need to be working full time and I will probably never be able to do that.

I want to work. All the stuff in the press about disability benefits makes me so worried.
Am I missing something here? Or am I just trapped?

Thanks for any helpful input.

From the Entitledto website:

“If you have already been assessed as having limited capability for work (either for Universal Credit or Employment and Support Allowance) and therefore already have a LCW or LCWRA element included in your award, this will not be affected by your earnings going above the threshold.”

what makes you think that getting a job will mean you losing the LCWRA?

PIP is completely unaffected by earnings, and the Citizens Advice website says you don’t even need to inform them if you start a job.

I was under the impression due to a conversation with someone at the job centre months ago that to work and keep LCWRA you had to work no more then 16 hours? Is that wrong information then?

I didn't realise you didn't have to tell PIP if you started a job. I would have thought it came under change of circumstances. I know that with PIP you can work at the same time but my experience of them is that they will try and not give it you for every reason (they declined me at first citing things I used to be able to do but no longer could as reasons).

Maybe I am getting overly anxious about this unnecessarily? I'm terrified of exploding my financial situation as it's already very tight and claiming the benefits in the first place made me very unwell with stress. Stress can make me bed bound.

Thanks for your reply.

It's very confusing. Scope are saying you can work any amount of hours on LCWRA. Other sources when you Google how many hours can you work on LCWRA say no more then 16 hours. I am so confused 😕

Citizens Advice would definitely be a good bet for advice, I’d be wary of google. That said if you’re on reddit, there’s a sub called DWPhelp that is usually pretty good for stuff like this.

My knowledge is more old style ESA rather than UC. But it did used to be with ESA you could try work for a period before losing LCW or LCWRA. They called this permitted work.

You can work with PIP so it would not trigger anything. Obviously if the work contradicts your claim then they will ask questions but a desk job in a library would not do that.

The 16h rule did apply for ESA but doesn’t apply for UC. You will be continued to get LCWRA until next review is due. If all reasons why you do have LCWRA apply you can still get it again as long as job doesn’t conflict with what you are saying health wise. UC is all about encouraging people to try work. The new announcements were that if you tried work and failed you wouldn’t be re tested again for WCA. Not legal as pre election but shows their intention to get people to least try working.

I work 17 hours a week now and it hasn't affected my LCWRA, I'm not due a review for another year.

There are not a set number of hours. You will lose your LCWRA if you working 16 hours contradicts the reasons you were given LCWRA in the first place though.

You don't need to inform PIP when you start work.

I definitely wouldn't be taking a job that left my family down by £500 a month. It's not fair especially if you have dcs. I don't know if you would actually lose all the benefits you say you would though. But I'd probably try to stick to jobs within walking distance as commutes can be unpredictable (especially if by public transport?) and the cost of transport makes it less worthwhile.

I am autistic and have MH issues but I don't have the same anxiety with my benefits or feel the need to work as you do. I've been on DLA/PIP for 15 years and I've always been renewed without appeal so I feel confident about getting it. But you could look at volunteering as a stepping stone to work and something that wouldn't affect benefits.

I would recommend going straight to the horses mouth for advice and not using Google at all.
Ask on your Universal Credit Journal for an appointment with a Disability Employment Advisor. Tell them you are thinking of starting a job and need a face to face or video appointment as soon as possible.

You can work with PIP so it would not trigger anything. Obviously if the work contradicts your claim then they will ask questions but a desk job in a library would not do that.

It depends what she gets PIP for. If she stated she can't undertake a journey on her own due to her condition(s) and got points for that, then suddenly starts leaving the house regularly for work would require her to report a change in circumstances.

I second asking for clarity from a Disability Employment Advisor.

My PIp says I can't travel to unfamiliar places with out support or someone accompanying me. Usually a job with a commute would be a no go but this job is unique that it is the same bus route as my parents so a very very familiar route to me. I can travel familier routes unaided along as I have my phone with maps for reassurance

I am just worried that that's nuanced though and PIp are not very known for understanding nuance about situations.

I will see if I can make an appointment with a disability employment officer

Doesn't that need adapting in your pip claim then? You can travel, with given adaptations? Maybe get dh or friend to go with you for few journies whilst you get familiar. Many folk get nervous on transport with new routes until they get comfortable with it.

What sort of debts do you have? There might be ways to deal with them which would help mitigate the loss of earnings. But you should get some advice about benefits as well as op have suggested.

Go bankrupt to clear your debts.

Accept that you aren't fit for work.

Find other ways to feel fulfilled.

Hi, hope you don't mind me asking the name of the charity that helps autistic people match with suitable jobs? Many thanks.