Community Associates and academics from the ESRC Centre for Care have come together to design and run a scoping project around the charges that disabled people in England pay towards non-residential care.
These charges are poorly understood. They refer to the contributions that local authorities require disabled people to pay towards the costs of their care. They are taken from income (including benefits), such that people are left with what is called the Minimum Income Guarantee. There are concerns that these charges push disabled people into poverty and debt.
Anne, Catherine, Eleni and Sam are part way through the research process (undertaking literature reviewing and interviews). In this commentary we reflect on the process of working together.
Why do a project on social care charging?
The idea for the project came from conversations with the wider group of Centre for Care Community Associates. Anne explains why this was an important area for research:
“Many people are unaware that people in receipt of support and not working have to pay towards their support. The public need to know.”
Much of the early part of working together focused on clarifying what these charges are. Both Anne and Eleni have expertise in this area as they pay the charges themselves. Catherine had done research before on self-funders buying their own care because their assets are above the means-test threshold – but not on these charges which are levied on disabled people out of their income. Since income includes benefits, they are paid by people living with very little money. Hundreds of thousands of disabled people pay these charges (exact national figures are not collected – some local figures are available here from Freedom of Information requests).
The early stages of the project included looking at how local authorities calculate how much payment should be made. This is not standardised – each local authority has its own approach. There is a lack of transparency and it is hard for disabled people to challenge if they feel they are being charged the wrong amount. Disabled people can claim back Disability Related Expenditure, but this is defined and administered differently in different local authorities.
Working together
The team are enjoying working together. As Eleni says: “It has been lovely to work with everyone as an equal member of the research team. This doesn’t always happen, but both academics in the team have been encouraging of true co-productive working.” Both Sam and Catherine have appreciated the chance to learn about a new area of social care, and one which does not receive the attention that it should. As an Early-Career Researcher (funded by the School for Social Care Research), Sam says: “I feel that each of us bring valuable knowledge and skills to the team and I am learning a lot from everyone.”
There have been challenges. Anne notes that when talking about charging, “It is tempting to talk about the personal rather than the political aspects.” Sam highlights that it has been difficult to find much existing literature on the topic, and to sign-up interviewees.
Impact of the research
Although this is a scoping project which aims to build a case for doing more research in the future, the team are committed to having an impact. As Anne says:
“Hopefully it will raise awareness not only with those not in receipt of support but disabled people who are struggling to pay charges and as a result of this have to hand their Direct Payment back to their Local Authority.”
Eleni wants to highlight the unfairness of the current system:
“I hear more and more nowadays of people refusing care, simply because they can’t afford the high charges that are imposed on them. When you add in other factors such as the lack of information, complexity of the system and the lack of support and advocacy available to help people, it’s no wonder that people just give up the battle. I really hope that this will highlight the issue to those who aren’t as aware and that it will have a useful practical effect on charging in the future.”
Sam says: “I hope that this project will raise the salience of the issues that social care charging presents social care users, both amongst policy makers but also in the general public.”
Findings from the research will be available on the Centre for Care website in 2026. For more information contact Catherine Needham, c.needham.1@bham.ac.uk
