LCWRA - Taking part in autism research studies

Tybalt

Hi all,

I am pretty unclear given the advice that I received today from the Citizens Advice which contrasted to what I read online about taking part in research.

I would like to take part in a Research Study which is run by researchers from the Autism Research Centre at a University. As a part of this study, I would be reimbursed my expenses (travel/lunch) and they would give me £15 per hour for my contribution to the study (it would take around 10 hours of contribution). Looking online, it seemed that this would be okay to do (even though I receive UC) as I am not taking a job - I am just taking part in Research.

Today I asked the Citizens Advice advisor (someone who is certainly very knowledgeable about Benefits) just to double check, and hew said that this would not be allowed as I am on LCWRA UC and this could contrast with why I am claiming LCWRA.

Thinking about it now, this was a secondary question I had for the advisor (my appointment was mainly to so with something else about my UC), and I don't know if I emphasised that I would be taking part in a RESEARCH STUDY and not paid work.

Unfortunately, given that it is a Friday evening (and me being a massive worrier), I am now prone to worry about this over the weekend until I can seek further clarification - hence me reaching out to ask here as I know there are many helpful and knowledgeable people here with a good understanding of what I can and can't do.

For context, the research study is about Autism, and I am Autistic (hence why I am UC LCWRA). I very much have always been interested in research and am keen to get involved in anything that can help advance the understanding of Autism - but of course want to ensure that I do not do anything wrong with my UC as this is more important.

Please can people explain if I would be able to take part in this Research Study? Is it a straight no, I couldn't take part - or could I take part and just claim my expenses back (and explain to them that I am on UC so c cannot work), or would I be able to accept the £15 per hour given that it is NOT employment - just research. If it helps, for context, I can share.more details of my pending agreement with the study.

Maybe people on here have come across these things before. There was also another opportunity which I liked the look of to take part in a PPI (Public and Patient Involvement) of another NHS Research Study related to Autism, but again I am worried as they are giving £25 per hour for taking part which I worry will be against the UC Rules.

Please help me understand. I have absolutely no reason to doubt what the Citizens Advice advisor said to me today (he was very good and has years of experience) but I just think that surely the system as it is would allow for Autistic individuals to help take part in research studies to help make lives easier for others with autism. I saw on some posts on here that even those with UC LCWRA have an earnings disregard every month. This may have nothing to do with my situation, and I didn't understand the context of what it meant, but if so would this be applicable to taking part in research studies.

Gosh, I feel like crying. It is so confusing. I really want to try and get involved in research just to try and put myself out there a bit and meet new people, but left my CA appointment today under the impression basically that because I am LCWRA, I am confined to a life where I can't take such opportunities or do anything to try and better myself and others.

He was very clear to me that anything that involved payment would not be allowed under my UC LCWRA.

Albus_Scope

Hi there @Tybalt and welcome to the community. 😁

The first thing I can suggest is checking your UC Claimant Commitment on your UC journal and see if it mentions anything relating to research studies.

I think what the person from CAB was trying to address was if you do something that goes against the reason why you're classed LCWRA, they could stop that element. For instance if you received LCWRA because you couldn't leave the house, but then you worked at a local shop for 2 hours, paid, they could say you can leave the house, thus do not need LCWRA. Does that make sense?