Introduction

There have been mixed messages in recent years about UK policies for and about disabled people. On the one hand, the disability strategy Fulfilling potential: Making it happen for disabled people (Department for Work and Pensions, 2013), updated in 2014, sets out the government's view of a society where disabled people can realise their aspirations and fulfil their potential. On the other hand, campaigns to strengthen and protect disabled people's rights made the headlines when the national budget in 2016 was described as a ‘sugar-coated assault on disabled people’ by The Guardian newspaper ( The Guardian, 2016). A string of reforms over recent years, including a change from Disability Living Allowance to Personal Independence Payments (PIP), changes to Employment Support Allowance, and cuts to social care funding have all left disabled people at increased risk of poverty and social exclusion.

In this chapter we present our analysis of the Poverty and Social Exclusion Survey 2012 (PSE-UK 2012) data in relation to disabled people in the UK. First, we look at how people have defined themselves as disabled, before moving on to exploring their experiences of low income, deprivation and poverty.

The precise extent of poverty and social exclusion among disabled people can, in many ways, be considered a ‘wicked problem’. ‘Wicked problems’ are unique social or cultural problems that are difficult or impossible to define, let alone solve. They do not have simple causes, or solutions, and because of complex interdependencies, the effort to solve one aspect of a wicked problem may reveal or create other problems. The use of term ‘wicked’ is in relation to the problem's resistance to definition, measurement or resolution, rather than in relation to being evil.

So what makes the issue of poverty and disabled people a ‘wicked problem’? First, there is no clear way of defining and therefore counting disabled people. Theoretical, policy and people's own perceptions of who is ‘disabled’ differ. Second, measuring poverty in disabled people is problematic as it frequently does not take account of the additional costs that disabled people incur because they are disabled. Let us first explore these aspects in a little more detail.

Introduction and background

The population of adults with intellectual disabilities has been largely neglected in survey research, as the significant impairments in communication and understanding that are common among this population were considered too great a barrier to their participation in large-scale surveys. While there had been qualitative research, prior to 2002 there had never been a nationally representative survey conducted with this population. In surveys concerning this population, data was largely collected from proxy respondents, such as parents or caregivers. In the absence of a sampling frame for the whole population, surveys generally used convenience samples of those in touch with services.

In March 2001, the UK government White Paper Valuing People: A New Strategy for Learning Disability for the 21st Century (Department of Health, 2001) was published, setting out the Government’s commitment to improving the life chances of people with intellectual disabilities in England. This was the first White Paper in thirty years concerning this population, and there had been a significant amount of change in service provision in that time. One important issue highlighted in the White Paper was the lack of national information available for England about people with intellectual disabilities, with much information based on estimates from administrative data, in the absence of survey research.