The aim of this chapter is to draw together 20 years of research in Britain on the costs of caring for a child with a disability and to reflect upon the impact of that research on policy in the UK, in particular policy related to financial support. The hope is that the chapter will not only present new perspectives on a very traditional form of disadvantage, but will also offer researchers ideas about how they can ensure that the results of their work make an impact on policy. However, before outlining the research, it may be useful to review briefly some of the work that has been done on the link between research and policy.
The impact of research on policy
The process by which research makes an impact on policy is notoriously intangible. Researchers may cherish the hope that their work will be seized upon by policy makers and incorporated into the next ministerial speech. Official statements may even foster the same theory. Thus, the general aim of the Department of Health's programme of health and personal social services research was described in 1990 as:
… to provide objective information for Ministers as a basis for developments in health policy, improvements in public health, and increasing efficiency and effectiveness in health and personal services. (DH, 1990, p xiv)
The same approach informs the idea of evidence-based policy, and the view that the introduction, or the continuation, of a social policy should be based upon clear evidence that the policy works. As David Blunkett, then Secretary of State for Education and Employment, said in a speech in 2000:
Social science research evidence is central to development and evaluation of policy. We need to be able to rely on social science and social scientists to tell us what works and why, and what types of policy initiatives are likely to be most effective. (Blunkett, 2000)
The evidence-based policy movement originated in evidence-based medicine and in a model of research in which the randomised controlled trial was the only acceptable source of evidence. However, from this start it has spread into the social sciences and into all areas of the welfare state, despite cynical references to ‘policy-based evidence’ (Marmot, 2004; Stevens, 2004).