Data collection and publication - disability: guidance

Guidance for public bodies on the collection of data on disability.

Annex 1: towards a social model of disability

The section below sets out a range of ongoing work to identify a set of questions to measure the social model of disability and participation restriction. As these questions are still under development this is included for interest, information and consideration only, not as guidance. The guidance will be revised in due course to reflect the development of these questions.

Health condition, impairment, and disability

The Health, Disability and Carers Harmonisation Sub-group (HDCHS) initiated a project in 2008 to establish a framework for disability definition and develop questions to measure the definition for use in social surveys. One of the outputs of this work was the initial set of harmonised questions for capturing data on disability, on which the current recommended questions are based.

Consultation workshops showed overwhelming support for separating out concepts of health condition, impairment and disability.[16] The importance of developing a second set of questions to produce measures of disability based on participation restriction caused by physical and social barriers was also demonstrated, as they have a disproportionately adverse effect on people with impairments.

The Life Opportunities Survey

The Life Opportunities Survey (LOS) is the first major survey to explore disability in terms of the barriers to participation that people experience.[17] It was conducted by the ONS on behalf of the Department for Work and Pensions (DWP) between 2009 and 2014, and assessed the level of participation of people with impairments, and the barriers they face in participating in key areas including work, education, social activities, and transport and public services.

The HDCHS consultations included the LOS in their comparisons of surveys that collect disability data, which found that the rate of disability reported by the LOS was higher than that reported by medical model based surveys. As such, there may be implications for population estimates of disability used to inform service need and policy development, and conduct international comparisons.

An example question from the LOS, extracted from a series of questions on participating in work, can be found in Annex 2. Most of the questions from the LOS follow this structure. Further examples and exact presentation of the questions can be found in the LOS questionnaire documents[18].

Inclusive Data Taskforce

The Inclusive Data Taskforce (IDTF) was established in 2020 to improve the UK's inclusive data holdings in a broad range of areas, including the nine protected characteristics of the Equality Act 2010.

The IDTF Recommendations Report[19] notes that survey questions are often considered outdated by relevant groups and individuals. This specifically includes disability data, with those taking part in the consultations calling for a shift from a focus on the medical model towards the social model of disability. As part of its recommendations the IDTF states that as a priority,

"ONS should transition its measures of disability to approaches more firmly based upon the WHO ICF and ICF-CY biopsychosocial model conceptual frameworks."

Moving forwards

The body of work being undertaken following the release of the IDTF Recommendations Report is substantial, and the work to provide a harmonised set of questions in line with the social model of disability is ongoing. Furthermore the National Disability Strategy (NDS)[20], published in 2021, will have implications for public bodies in Scotland, however the exact impact and requirements are as yet unknown.

For the time being, the existing harmonised disability measure guidance recommended in the main body of this guidance is in use. However, the IDTF recommendations and the NDS have drawn attention to the need to regularly revisit harmonised standards, and this guidance will continue to be revisited and updated as new recommendations are made. The harmonised standards homepage[21] contains further information on the ONS harmonised question series and the National Statistician's response to the IDTF recommendations.




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