Measuring disability for the Equality Act 2010 harmonisation guidance
This harmonised standard is under development following the Inclusive Data Taskforce recommendations to review and update the harmonised standards every 5 years. This is in line with the GSS Harmonisation Workplan where disability has been identified as a priority topic.
You can find more information about this in the “Further information” section of this page. If you would like to be involved with this work, please contact us at Harmonisation@statistics.gov.uk.
|25 June 2019
|GSS Harmonisation Team
|Who this is for:
|Users and producers of statistics
|Harmonisation standards and guidance
Harmonisation is the process of making statistics and data more comparable, consistent and coherent. Harmonised standards set out how to collect and report statistics to ensure comparability across different data collections. This produces more useful statistics and gives users a greater level of understanding about the topic.
The long-lasting health conditions and illness (LLHCI) standard and the activity restriction standard are combined to determine if an individual would be identified as disabled. This is either according to the Equality Act (2010) – Great Britain or the Disability Discrimination Act (1995) – Northern Ireland.
The Acts define an individual as disabled if they have a physical or mental impairment that has a substantial and long-term negative effect on their ability to do normal day-to-day activities.
These standards can be complemented by the impairment standard which gives more detailed information on how a person’s life is impacted.
The harmonised questions on this topic are designed to collect basic information, for use in the majority of surveys. They are not designed to replace questions used in specialist surveys where more detailed analysis is required.
This section provides guidance on the survey questions to use when collecting information about disability. If a respondent says “yes” to the long lasting health conditions and illness standard question and then either “yes, a little” or “yes, a lot” to the activity restriction question then under the legal definition they are disabled.
|Do you have any physical or mental health conditions or illnesses lasting or expected to last 12 months or more?
|Does your condition or illness\do any of your conditions or illnesses reduce your ability to carry-out day-to-day activities?
|Yes, a lot
Yes, a little
A person is not considered disabled if they say “yes”, they have a physical or mental health condition or illness lasting or expected to last for 12 months or more, but it does not restrict their activities.
How these standards should be used
What types of data collection this standard can be used for
These questions measure the extent and duration of restrictions carrying out day-to-day activities if a person has any long-lasting health conditions or illnesses. They are for use in social surveys.
These standards can be used for:
- interviewer-led questionnaires
- computer assisted personal interviewing (CAPI)
- computer assisted telephone interviewing (CATI)
- paper-based and online self-completion forms
Guidance for Data collection
This question is to be asked to respondents aged 16 and over.
This question can be asked by proxy for respondents aged under 16.
If respondents are too ill to respond on their own behalf, proxy responses from a family member or friend can be recorded. For those not able to speak English, a translator should assist with the data collection.
Spontaneous responses can be recorded but should not be presented as options to respondents.
Examples of surveys that use these standards
Each of the following surveys uses the harmonised standards to produce comparable data on individuals considered disabled according to the Equality Act or Disability Discrimination Act:
- Annual Population Survey
- Continuous Household Survey
- English Housing Survey
- Family Resources Survey
- Health Survey for England
- Health Survey Northern Ireland
- Labour Force Survey
- Living Costs and Food Survey
- National Diet and Nutrition Survey
- National Survey for Wales
- National Travel Survey
- Northern Ireland Life and Times Survey
- Scottish Household Survey
- Taking Part: The National Survey of Culture, Leisure and Sport
These surveys have used the core harmonised question on long-lasting health condition and illness but do not have the non-response options of prefer not to say or refusal.
- Crime Survey for England and Wales
- Millennium Cohort Study Seventh Sweep (MCS7): MCS Age 17 Young Person Interview
- Millennium Cohort Study Sixth Sweep (MCS6): Age 14 Survey – Household and Parental Questionnaire
- Travel Survey for Northern Ireland (it will be adopted in full from 2021)
This list is correct, using the latest published questionnaire, at February 2021.
Use in the Census
These standards were chosen for use in the 2021 Census in England and Wales.
Scotland used the same question as the 2011 Census.
Northern Ireland also used the same question as the 2011 Census.
This means that data from the census in Scotland and Northern Ireland is not comparable with the Census in England and Wales. They will be comparable with each other.
- 2021 Census Questionnaire – England
- 2021 Census Questionnaire – Wales (English)
- Holiadur Cyfrifiad 2021 – Cymru (Cymraeg)
- 2021 Census Questionnaire – Northern Ireland
- 2022 Census Questionnaire – Scotland
This table shows output categories for disability. The coding used for these categories should comply with the coding conventions applied in the specific survey source. An example code is given in the table.
Output categories: disability
Outputs will be comparable if they have been produced from surveys using these standards. However, we would not recommend comparing levels of disability from this output to other levels found in publications that do not use the harmonised measure. The standard is developed to specifically measure disabled people as categorised by the legislation.
How this standard was developed
The list shows the coverage of the legislation and these harmonised standards:
- Equality Act 2010 — this applies to England, Wales and Scotland only and replaces the Disability Discrimination Act
- Disability Discrimination Act 1995 — this applies in Northern Ireland
- Harmonised standard — this can be used for the whole of the United Kingdom
Alignment to legislation and potentially missed populations
There are some groups who might not be captured by the harmonised standards. For example, some groups were not intended to be collected when the original questions were designed, and some groups do not answer the questions in the way we would expect. This makes it difficult to count these people as disabled in alignment with the Equality Act (2010) and the Disability Discrimination Act (1995).
The Equality Act (2010) covers neurodiversity as a disability if the neurodivergence is “having a substantial adverse effect on the ability of the person concerned to carry out normal day-to-day activities”. But our recent review of the disability harmonised standards shows that neurodiverse people do not consistently recognise their neurodiversity as a physical or mental health condition or illness.
An answer of “no” to the long lasting health condition and illness standard means respondents are not quantified as disabled regardless of the impact of their neurodivergence. Because of this, it is likely that the harmonised standards undercount neurodiversity in the wider disabled population. We do not recommend using the current standards to count the neurodivergent population.
The Equality Act (2010) states “an impairment is to be treated as having a substantial adverse effect on the ability of the person concerned to carry out normal day-to-day activities if measures are being taken to treat or correct it, and but for that, it would be likely to have that effect”. The Act aims to include people who have a condition or illness regardless of whether they are receiving “any treatment or medication”.
By contrast, the harmonised standard emphasises current activity restriction and was designed to exclude cases where medication or treatment means that activities are not affected. A 2008 workshop showed that questions in line with legislation were confusing for respondents. Respondents did not like being asked to “hypothesise or speculate” about their restrictions if medication was withdrawn.
Research recently conducted with ONS survey interviewers suggests that the current guidance is not as good as it could be. We found that some interviewers were including people even when their medication meant their activity was not restricted.
The Equality Act (2010) states that “certain medical conditions” are always included as a disability. The Equality Act (2010) also covers progressive conditions if the condition is affecting day-to-day activities.
The Disability Discrimination Act (1995) refers to “progressive conditions” more generally and includes specific provisions for muscular dystrophy. Progressive conditions are ones that get worse over time. People with progressive conditions can be classed as disabled.
People who are diagnosed with HIV or AIDS, cancer or Multiple Sclerosis automatically meet the Equality Act (2010) disability definition from the day of their diagnosis.
When the harmonised standards were originally developed in 2008, data on these conditions was being gathered elsewhere and so the original question design did not intend to count them in the harmonised standard. You can find out more about this in the Health Statistics Quarterly article “Update on the harmonisation of disability data collection in UK surveys”. It is currently unclear if the harmonised standards are capturing people with these conditions as it depends on how people answer the questions and further research will be needed to explore this.
Section 6.4.a of the Equality Act states “a reference (however expressed) to a person who has a disability includes a reference to a person who has had the disability”. The harmonised standards do not make any reference to past health conditions or activity restrictions.
Groups outside the core disabled population will only be included under these standards if they answer “yes” to the long lasting health conditions and illness standard and “yes, a little” or “yes, a lot” to the activity restriction harmonised standard.
The harmonised standards may also capture people who do not meet the legal definition of disabled. Both Section 6 the Equality Act (2010) and Section 1 of the Disability Discrimination Act (1995) refer to presence of condition or illness and longevity of impact. However, the harmonised standards capture data on how long a person has had a condition or illness and whether it affects their daily life. This means that, unlike the Equality Act (2010) definition, the harmonised standards would capture information about a person with a long-term condition that only affected them for a short period.
Inclusive Data Taskforce and GSS Harmonisation Workplan
In October 2020, the National Statistician established the Inclusive Data Taskforce. It was designed to improve the UK’s inclusive data holdings in a broad range of areas. This includes the nine protected characteristics of the Equality Act.
In September 2021 the Taskforce recommendations were published. Some of these recommendations specifically refer to harmonisation.
In response to the recommendations, the Office for National Statistics (ONS) oversaw the publication of an Implementation Plan in January 2022. This gives information about the current and planned initiatives across the UK statistical system. It refers to a GSS Harmonisation workplan, which was published in February 2022. This workplan includes reviewing, refining, and updating harmonised standards.
The workplan sets out activities for this standard in relation to disability. This includes:
- reviewing the topic area
- working with stakeholders and user groups to make sure disability standards meet user needs
- testing possible improvements and changes to the question design for the disability standards
Timescales for this work will be guided by the feedback the team gets throughout the project. We have:
- run research and engagement activities throughout 2022
- published the first findings from our research and engagement work in our review of the disability harmonised standards
We are now working to:
- carry out further research and engagement activities throughout 2023
- design draft questions for updating the disability standards by winter 2023 — this will depend on our research and engagement findings
- publish updated online self-completion questions by early 2024, followed by telephone mode and face-to-face mode questions
The Inclusive Data Taskforce (IDTF) also put out recommendations specifically for disability harmonised standards. These included the need to revise measures of disability to make them closer to the International Classification of Functioning, Disability and Health (ICF) biopsychosocial model.
The biopsychosocial model of disability considers environmental factors but also includes the role of health conditions such as diseases, disorders and injuries.
There are two other models of disability:
- the medical model of disability focuses on a person’s condition or illness and the impairments that result from it
- the social model of disability stands in opposition to the medical model and places the disablement process on societal barriers rather than in the individual
Questions relevant to the social and biopsychosocial models focus on activity limitations and participation restrictions regardless of medical diagnosis.
The long lasting health condition and illness and activity restriction harmonised standards were designed to align with the Equality Act (2010) and Disability Discrimination Act (1995). It is important to note that UK legislation and the social model of disability are incompatible in some ways. For example, the Equality Act (2010) considers certain people, such as people with progressive conditions or receiving treatment, to be disabled regardless of whether they encounter barriers.
The impairment harmonised standard aligns with the social model of disability to some degree. The question concentrates on impairments rather than health conditions. But the guidance for the “socially or behaviourally” response option does mention specific medical diagnoses. We are looking to address this in the near future.
The harmonised standards will continue to align to legislation, but we will also try to incorporate elements of the social and biopsychosocial models wherever possible. In our recent review of the disability harmonised standard we shared that we will consider creating an additional question that is aligned more closely to the social model of disability.
Further information on these standards can be accessed in two Health Statistics Quarterly articles published in Issue 51 in August 2011.
We are always interested in hearing from users so we can develop our work. If you would like to be involved with this work or you use or produce statistics based on this topic, contact us at Harmonisation@statistics.gov.uk.
|26 April 2023
|Clarification on how the standards align to legislation and models of disability.
|11 January 2021
|Adding in surveys which include the harmonised standard.