1. The United Kingdom experience in data collection and statistics on disability Ian Dale Head of Disability Analysis Department for Work and Pensions Steel City House, Sheffield, S1 2GQ ian.dale@dwp.gsi.gov.ukian.dale@dwp.gsi.gov.uk 00 44 (0)114 2948308

2. Summary This presentation is in four parts. The structure of disability statistics collection in the UK, and the policy context. The approach to data collection in the UK, including the commitment to co-production. A short description of the most important officially funded surveys and other data sources. Some of the strengths of the UK system, and some lessons learnt for future data collection.

3. Structure Policy responsibility for disabled people rests with the Department for Work and Pensions (DWP). Its officials support the Minister for Disabled People. In December 2011 the DWP established a Disability Analysis Division (DAD). DAD carries out all the disability analysis in DWP. This has two advantages. Firstly, analysis is more integrated. Secondly, statisticians and other analysts are able to work closely with policy makers. DAD has access to disability data from the UK welfare system. It also funds and designs the main disability surveys. Fieldwork is carried out by the Office for National Statistics.

4. Context The UK recognises the social model of disability. This means that barriers in society result in disability. A health condition or impairment is not in itself disabling. The UK Government is undertaking a series of welfare reforms. Payments to disabled people will be assessed differently. Spending on employment programmes for disabled people is protected, but it is being used differently. The strategy document Fulfilling Potential: Next Steps sets out the Government’s vision. Its themes are realising aspirations, individual control, and changing attitudes. London hosted a successful Paralympic Games this summer.

5. Approach to data collection UK surveys are usually conducted face-to-face in people’s homes. Steps are taken to ensure anyone with an impairment can take part. People have the right to opt out. People are asked directly whether they have an impairment. They might be shown a list. If they do, they are asked whether this limits what they can do. All research follows ethical guidance for government social research. New surveys need approval from an ethics committee. All data are treated as confidential and held securely. DAD receives only anonymised data sets from the ONS. The DWP is committed to publishing the results of all its surveys. Ministers and senior officials see the findings 24 hours before publication.

6. Co-production and accessibility The UK is committed to co-production. This means working with disabled people as partners, including in data collection. The DWP has published a guide Involving disabled people in social research. It describes how to co-produce surveys, and how to make them accessible. The ONS conducts focus groups with disabled people and with people who are not disabled. They explore what people understand by terms like ‘disability’ and how best to word survey questions. An advisory group helps DAD to design surveys and interpret the results. Disabled people’s representative organisations and academics take part. Survey results are published in accessible formats. For example there are ‘easy read’ versions.

7. Official statistics The Family Resources Survey is an annual survey of households. It asks people whether they have any difficulties – for example moving about, or remembering things. The Life Opportunities Survey is a survey that asks people about barriers to taking part in society. It is a panel survey – ONS go back to the same people every one or two years. This makes it possible to see if barriers emerge or go away. There is also a sample of people who are not disabled, to provide a comparison. The Opinions Survey is a monthly survey. It asks people about some key topics. The questionnaire can be changed every few months. This makes it possible to research new topics quickly. The DWP publishes a range of statistical indicators. These track issues which disabled people have said are important.

8. Topics collected Family Resources Survey Life Opportunities Survey Opinions Survey Household composition Income Poverty Childcare Work Housing Work Transport Accessibility of the home Public buildings Leisure Education Crime Social contact Public services Health conditions Age of onset Discrimination Awareness of the law against discrimination Transport Public services

9. Other sources Records of welfare payments and the people who receive them are kept on a central database for analysis. Participants in employment programmes are also recorded. Data can be linked with other departments’ records – for example on income tax or prisoners. The British Social Attitudes Survey records how public attitudes change over time – for example towards disabled people and welfare spending. Disabled people’s representative organisations sometimes conduct their own research among their members. They also pay polling organisations to conduct surveys.

10. Strengths of the UK system Analysts work closely with policy makers, rather than in a separate statistics department. Involving disabled people makes the statistics more relevant. Asking people directly about disability, and about what is important to them, also make the data more meaningful. There is a good mix of surveys - for long term trends, topical issues, and more detailed analysis. The panel design of the Life Opportunities Survey allows analysis of how life changes (for example getting or losing a job) impact on disability. This is more powerful evidence than ‘snapshot’ statistics.

11. Lessons learnt The social model focuses on barriers. It is important also to collect data on people’s health conditions – for example how longstanding or severe they are. Data on barriers help policy makers to understand what problems need tackling. It is also important to collect data on enablers, so policy makers can understand what works. Disability is not fixed. Health conditions can emerge, get worse or better, or go away. The same is true of barriers. Surveys need to capture this. Survey results can be very slow to arrive – sometimes too slow to influence policy making. Issues like co-production, panel data and accessible formats make this more of a challenge.

12. Summary The UK Government is reforming the welfare system. A team of analysts work closely with policy makers. Analysts can draw on a range of data. Each survey meets a different need. Fieldwork is conducted by a separate department. Co-production makes the data more meaningful. There are ethical guidelines. Data are kept confidential. Disability statistics present extra challenges. Panel data permit the most powerful conclusions. Disability is not fixed. The role of the researcher is to discover what works, not just to record health conditions and barriers.