Legal Issues: Some key pieces of legislation that may impact on partnership research

Service users and service providers who are interested in doing partnership research need to be aware of laws and government policies which deal with issues of rights, employment and service users’ involvement in the services they receive. The legal aspects affecting service users’ lives can be complicated and difficult to understand. In some cases, recent law and policy improves the opportunities for service users to be involved in partnership research. In other cases, the complexity and the ‘red tape’ attached to these laws and policies works as a barrier.

We will briefly outline some of the legislation and policies here and some of the issues they raise regarding partnership research. This is not an exhaustive discussion of all of the legal/political issues facing service users and service providers, rather an introduction.

Service user involvement in doing research is broadly both an issue of rights and opportunities.

• Rights: This concerns service users’ rights to employment and rights to involvement in decisions about the nature and extent of services they receive.
• Opportunities: This concerns the opportunities available for service users to be involved (and taken seriously) as researchers.

The right to employment is an issue which will affect many service users seeking to be employed as researchers, particularly if they have a disability. The British Disability Discrimination Act is one piece of legislation which deals with this issue:

The British Disability Discrimination Act
Service users and service providers wanting to do research in partnership may be affected by acts of law relating to the rights of people with disabilities. These laws which are grouped under the Disability Discrimination Act include the Disability Discrimination Act 1995 and 2005, as well as the Disability Rights Commission Act 1999. According to the Disability Discrimination Act of 1995, '.a person has a disability for the purposes of this Act if he has a physical or mental impairment which has a substantial and long-term adverse effect on his ability to carry out normal day-to-day activities'.

One key aspect of the Disability Discrimination Act (DDA) is that people with disabilities have the right of employment. As doing research may be considered a form of employment, the DDA is relevant to many service users who want to do research as well as to those who employ them.

The DDA has its origins in the disability movement of the 1980's and 1990's and although it is an attempt at legislating for the rights of disabled people, it is full of loopholes and considered by many to be 'weak legislation' (Swain, J., French, S. and Cameron, C., 2003). Although the DDA does provide a framework under which disabled service users have rights to employment, it does not guarantee employment for all.

You will find information about the Disability Discrimination Act at: www.drc.org.uk/thelaw/thedda.asp

The Department of Work and Pensions has more specific information on its website about employment schemes for people with disabilities. This can be found at: www.jobcentreplus.gov.uk/cms.asp?Page=/Home/Customers/HelpForDisabledPeople

A government policy document concerned with the rights of health service users to be involved in making decisions about services is entitled A Quality Strategy for Social Care. This document stresses the importance of service user consultation and the setting up of local partnerships which include service users and service providers.

A Quality Strategy for Social Care
In this policy document the Department of Health lays out its vision for the future of social services. Social services and other related service providers are encouraged to consult with service users about the services they receive. The document does not directly say that service users should carry out research in partnership with service providers but it does emphasise the importance of Partnership Boards. These boards include service users who are involved in some of the planning and decision making about services on a local level.

A copy of A Quality Strategy for Social Care can be downloaded.

An example of a policy affecting the lives and opportunities of the learning disabled service users we have been working with is known as The Learning Disabilities White Paper: Valuing People.

Valuing People
The White Paper Valuing People: A New Strategy for Learning Disability for the 21st Century, was published in March 2001 and operates as a set of guidelines for rights and services for people with learning disabilities. The Valuing People White Paper recommends that people with learning disabilities should have a say in the decisions that affect their lives (such as housing and support) regardless of the severity of their disability. However, the White Paper does not specify how much of a say people with learning disabilities should have nor how they are to be included.

The Valuing People White Paper focuses on the importance of learning disabled service users’ views and the importance of research into the lives and perspectives of people with learning disabilities. Like the Quality Strategy for Social Care, the Valuing People White Paper also emphasises the importance of Partnership Boards which involve learning disabled service users. However, at no point does it directly talk about the involvement of people with learning disabilities as researchers

The Valuing People White Paper can be found online.

The website of the Valuing People Support Team can be found at: www.valuingpeople.gov.uk/

The Mental Capacity Act 2005
The Mental Capacity Act 2005, unlike the Valuing People White Paper, is a statutory (legally binding) framework for ‘empowering’ vulnerable people to have more control over their own decisions. It will remain to be seen how this act is interpreted and what effect it has on the lives of people with learning disabilities and their involvement in research. More information on the Mental Capacity Act 2005 can be found online - as can Information leaflets about Capacity and Consent from the Department for Constitutional Affairs.

Linked to issues regarding the rights and opportunities for service users' involvement in partnership research are issues concerning services users' supports, benefits and payments. More about these related issues can be found on this site (see Legal issues: Benefits and payments).