Legal Issues: Benefits and Payments

Here we provide some basic information about support, benefits and payments for service users who are engaged in partnership research.

The system of support, benefits and payments for service users is complex and the extent and nature of benefits received varies widely from individual to individual. The Disability Rights Handbook is a very useful source of information about benefits for disabled people. The following websites may also be helpful:

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

Paying service user researchers
Although there is not agreement about whether to pay people who are participating in research or not, there is less debate over paying those working as researchers. People who work as researchers are generally expected to receive payment for their work. However, when the line between researchers and researched is blurred, as it is in partnership research, and the researchers are service users, the issues are less straightforward.

The relationship between benefits and payments is of particular concern when conducting partnership research with service users. Many potential research partners may get benefits which will affect how much and how often they can be paid (if at all) for doing research. The issue of paying service users for their work can also be difficult to resolve because of the many different systems involved. For example, in doing research which is carried out under the management of a university, payments made to service user researchers may be subject to the (potentially conflicting) regulations of at least three different systems – the Department for Work and Pensions, the university and the research funder.

Another possible problem is that some service users do not have bank accounts. This means they cannot receive payment directly through university expense forms (which must be paid into bank accounts). University and external funding bodies also have to follow strict accounting rules under which cash payments are not generally allowed.

Because of their benefits, some of the people with learning disabilities we have worked with are only legally entitled to receive £20 per week payment for ‘permitted work’ (see here). Others are not entitled to receive any money, no matter how many hours they work, or what sort of work they do. Of course, we should continue to try to find better solutions to the issue of payment despite the difficulties.

Some strategies for paying ‘service user’ researchers
We have not found one good way of dealing with the issue of paying service user research partners. Each case will be different and depend on the context of the research funding body, the benefits system and the individuals involved. Following are some of the strategies we have employed when paying service users who are partners in research.

Working with research funding bodies:

• It may be possible to work with research funders, if they are funding research which involves ‘service users’ as researchers. They may also be prepared to consider cash payments for ‘out-of-pocket’ expenses.
• Some funding bodies such as the Department of Health (see the Values Into Action website for more information) have funded full-time research posts for people with learning disabilities. It is important that there are opportunities for learning disabled people to be funded as full-time researchers. However, given the often short term nature of research posts and the uncertainty of the position, rights and status of people with learning disabilities in society this is problematic. People with learning disabilities in fixed term research posts will be extremely vulnerable when their contracts finish, as most will have had to come off their disability benefits to take up the posts and may find it difficult, or impossible to get benefits again. It can also be difficult for people with learning disabilities to find other full-time employment.

University policy and practice:

• Often universities will allow 'consultants' to be paid a per diem in cash, that is a daily cash payment for food and transport on days that they work. This cash in hand should not impact on people's benefits and it is a system we have used to pay service user researchers in the past. Still However , the total that each individual person will be entitled to get per day will rarely exceed £10 . .not much of a wage for the work.
• Some universities ( and other research funders) may allow for 'petty cash' to be managed by those who have responsibility for running a project. It may be possible to pay people cash in this way, but again, it is unlikely to be substantial amounts.

Payment in goods and services:

• It may be possible to 'pay' people in goods and services which will not affect their benefits. For example if a service user working on a project needs a computer for some aspect of the work, it may be possible to purchase this with project funds and arrange it so they will be able to keep the computer at the end of the project they may be able to keep it at the end of the project . However, this type of arrangement may be difficult to set up, as most universities funding bodies will expect to keep hold of any unused or reusable materials purchased with project funds material/equipment . Many research funders are very restrictive about the money they provide for hardware such as computers. It may be possible to negotiate gift certificates or the like or something similar as methods of payment for service user research partners, but this will depend on the circumstances.

Other forms of ‘payment’:

Using the word payment may suggest that the only thing worthwhile to be gained from doing research is money or goods. There are other potential benefits for service users to be gained from doing research, which may be as important as money.

• Learning about research – doing research alongside more experienced researchers may be one method of learning about doing research which can be useful for future work.
• In exchange for helping with university research, some service user researchers have been offered help in doing their own research (including raising funds), or other projects. For example, a person with learning disabilities we work with asked for help with practising reading in exchange for work on a project.
• There is value in having your views and experiences taken seriously and being represented fully in research.

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