New social model-based survey questions for disabled people

About the study

The Welsh Government is committed to the social model of disability, which views societal barriers as responsible for disabling people, rather than their impairments. To support this commitment, the National Centre for Social Research (NatCen) conducted a discovery phase to gather insights and inform the development of more inclusive and accurate survey questions. This phase aimed to understand how current disability-related data is collected, identify gaps, and explore ways to improve the alignment of survey questions with the social model of disability.

Findings

Main findings include:

• Preference for the social model: Disabled people and data users support a shift from the medical model to the social model, emphasising the focus on societal barriers over individual impairments.
• Inclusive language: Participants highlighted the importance of using inclusive and non-stigmatising language in survey questions.
• Complex experiences: Existing survey questions are often too simplistic and fail to capture the nuanced and fluctuating nature of many impairments.
• Diverse data needs: Most data users require questions that can monitor trends over time, align with legislation like the Equality Act 2010, and provide detailed information for policymaking and service planning.
• Support for impairment questions: The GSS harmonised impairment question was preferred over the harmonised questions on long-lasting health conditions and activity restrictions but still requires refinement.
• Barriers-focused questions: There is strong support from data users and disabled people for developing new questions that focus on the societal barriers faced by disabled people, such as discrimination and accessibility issues.
• Practical considerations: Questions need to be clear, concise, and suitable for self-completion surveys to ensure high response rates and accurate data collection.
• Children and young people: Existing measures often overlook the experiences of disabled children and young people, indicating a need for more age-appropriate questions.
• Comparability versus inclusivity: Data comparability is particularly important to data users; however, many participants in the deliberative workshops prioritised inclusivity and the use of up-to-date, respectful language.
• Inconsistencies in definitions: The systematic review identified significant inconsistencies in how disability is defined and measured across different surveys, highlighting the need for standardisation.

Methodology 

The discovery phase of the social model of disability research, conducted by NatCen for the Welsh Government, utilised a multi-faceted approach to gather comprehensive insights. The methodology comprised 4 main components.

Firstly, a literature review was conducted to analyse academic and grey literature on various models of disability, including the medical, social, and biopsychosocial models. This review identified the strengths and criticisms of each model and their implications for survey design and data collection.

Secondly, 3 online data-user workshops were held with Welsh Government employees, public sector workers, and third sector professionals. These workshops aimed to understand the current use of data about disabled people, limitations of existing measures, and the potential for new questions aligned with the social model. Discussions included practical data collection needs, legislative alignment, and the ability to monitor trends over time.

Thirdly, a systematic review of existing surveys and questions related to disability was conducted. This phase aimed to evaluate the current instruments used for gathering data on disability, identifying gaps and areas for improvement to ensure closer alignment with the social model of disability.

Finally, 2 online deliberative workshops were conducted with disabled people from across Wales. Participants shared their views on disability-related language, the appropriateness of existing survey questions, and the potential for new questions focused on societal barriers. Findings from these workshops will be central to developing new survey measures in the next phase of the research, which will include cognitive and field testing.

The study adhered to the principles of the social model by ensuring accessibility and inclusivity throughout the research process. Measures were taken to accommodate various language and access requirements, such as providing materials in multiple formats and offering support for participants with different needs. The next phase aims to produce survey questions that are inclusive, respectful, and reflective of the social model, ultimately leading to better outcomes for disabled people in Wales.