Legal Issues: Support Benefits and Payments

Here we give some information about payments for service users who want to do partnership research.

The system of payments for service users is complicated and will be different for different people. The Disability Rights Handbook is a very useful source of information. The following websites may also be helpful:

• Department for Work and Pensions website
• Directgov website
• Citizens Advice Bureau website

Paying service user researchers
People who work as researchers are usually expected to get paid for their work. But in partnership research, where researchers are also service users, it is not always easy or possible to pay people for their work.

Some of the problems are:

• Some organisations have strict guidelines about paying people who don’t work for them full-time. For example, some service users don’t have bank accounts. Some universities and other organizations will only pay money into bank accounts.

• Because of their benefits, some service users are not allowed to earn any money. Or they may be allowed to earn only a small amount of money each week. If they earn more than this they may risk losing their benefits (See here).

• Of course, we should always try to find ways of paying people for their work, even if it is difficult.

Some ways of paying ‘service user’ researchers
These are some of the ways we have been able to pay our service user research partners:

Working with research funders

• Service user researchers should always get paid for all their expenses like meals and travel.
• Some research funders will agree to paying service user researchers a daily rate for the work they do. It is a good idea to talk to funders about this before you begin.

• Some research funders, for example the Department of Health (see the Values Into Action website for more information) have funded full-time research posts for people with learning disabilities.

Working with universities:

• Some universities will allow someone on a project to be in charge of a small amount of cash. It may be possible to pay people cash in this way. This will probably only be a small amount of money.

Payments in goods and services:

It may be possible to ‘pay’ people in goods and services which will not affect their benefits. Sometimes we have exchanged services with researchers. They have worked on the research and we have helped them learn how to use a computer, or to read better.

Other kinds of ‘payment’:

Using the word payment makes it sound like the only good thing to get for doing research is money. There are other things service users can get from doing research, which may be as good or better than money. Some of these things could be:

• Learning about research. Doing research with other researchers is a way to learn about doing research. People may then be able to use what they learn in other work.

• Researchers may work with service user researchers to offer them help in doing their own research or projects.

• It can be very good to take part in research and have your ideas heard. In this way we can all try to change the world for the better.

More information about legal issues can be found on this site (see Legal Issues: Some key pieces of legislation and Legal Issues: CRB Checks)

Other useful sites:
Disability Rights Commission – Guidelines for Ethical Research

Involve have produced a guide to paying members of the public who are actively involved in research.