Data monitoring – Asking about disability

This is a brief guide to how and most importantly why organisations should ask their workforce about disability.

Many organisations start the data monitoring process by asking how to word the questions they will ask. Language is undoubtedly important – but there is a great deal to think about first, from timing to legal implications. Advice on wording for the questions is right at the end of this guidance.

Purpose of the survey or questions

The first and most important question for any organisation is to ask itself why it wants this information and what it is going to do with it. There is little point in collecting data for the sake of having the data or information – a mere counting exercise.

When asked the three most common reasons for collecting data given by organisations are

• To advance the inclusive culture of our organisation.
• To understand how many employees have a disability.
• To encourage more employees to share that they have a disability.

These are all valid reasons. Nevertheless, before you ask colleagues about their disability you need to be clear on and have a plan for:

1. What you are going to do with the information on how many employees have a disability (or at least how many employees are prepared to tell you that they have a disability)?
2. How, and why, you want more employees to share that they have a disability; and
3. How this data will help you advance an inclusive culture within your organisation.

Begin with the end in mind

Have a clear plan for how you are going to use this data before you collect the data. Share your plans for the data with your workforce so they know why you are collecting it and what you will do as a result.

Think about what you might do with the information (depending on how it is collected for more on which see below). For example;

• Are you trying to find out if disabled people are under-represented in your organisation as a whole, or in parts of your organisation such as certain departments, roles or grades? If the data you collect bears this out, what plans are you considering to improve this representation, for example via recruitment or talent development?
• Are you looking for disabled people to speak openly about their disability and be role models? If so, what plans do you have in place for a communications campaign on disability in the workplace and channels through which people can speak about their experiences?
• Do you want to know how many people work with adjustments or would like to work with adjustments? There are legal implications to asking questions about this (see below) and so before asking, you will need a robust workplace adjustment process in place that is able to respond and act on each and every request you might receive through the survey for a reasonable adjustment.

If people don’t know why you are collecting the information and what you are going to do with it, they might be reluctant to share what is often considered very private, information with you. You might also find that, far from advancing an inclusive culture, you create a culture of fear. Some people might fear that they are being asked to “catch them out” because they haven’t told their manager or employer about a health condition or disability. Others might fear that the information will be used against them and they will be side lined from projects or promotion or that they might even lose their job.

Once you have conducted your survey, make sure that you take some action and even more importantly communicate those actions to your workforce. Communicate your progress often and via different channels. It is also worth considering why an employee might want to tell you about their disability i.e. “what’s in it for them?” If there is no obvious benefit in sharing this information, then there is no real reason to share often private information.

It is often rightly said that you cannot over-communicate. If you don’t do anything with the information or don’t tell people what you are and have done, they will think that telling you about their disability was a waste of time. Not only will they be less likely to participate in future surveys, but they might also become less satisfied and engaged with you as an employer than if you hadn’t asked them at all. Equally, people may be more likely to participate openly and honestly in future surveys if you act, communicate and communicate again.

When to ask (and when not to ask) about disability

Timing is important. It is unadvisable to conduct any sort of diversity survey during or just before any planned restructure, especially if redundancies are planned. Conducting such surveys during any period of uncertainty such as poor business performance or an economic crisis might also cause alarm and fear amongst your employees. Not only will you be less likely to get accurate information and data, but you might also set back your aim to create an open an inclusive culture.

Will the survey be anonymous, or will you ask employees to identify themselves?

If you only want to know how many disabled people work for you or how many people in your workforce self-identify as disabled, then an anonymous survey is most likely to yield results. Be sure to make it clear that the survey is anonymous, and that people will not be identified. As ever, tell people why you are asking for the information and what you plan to do with it. Be aware, however, that it can be difficult to conduct a truly anonymous survey in very small organisations or departments.

Legal implications

If the survey is not anonymous you will need to ensure that you meet all the legal requirements that come with holding this information.

First, there are data protection implications.

• Information about health or disability is sensitive personal data and so you will need the explicit consent of the data subject to store and process the information for your specific purposes. This can be something you ask for on the survey itself, but it is important that people fully understand what it is that they are consenting to when they agree. A small tick box or opt out may not be sufficient.
• You will also need to tell people who participate in the survey why and what they will do with it.
• You must ensure that your storage systems are secure, and that the information cannot be accessed by any other person or used for any other purpose than the ones stated on the survey.
• You will need to plan for deleting the data securely once you’ve finished with it.

There might also be Equality Act 2010 implications if people tell you that they need adjustments for a disability or long-term condition. Remember that as an employer you have a duty to make reasonable adjustments when you know or could reasonably be expected to know that a person has a disability that has a long-term and substantial impact on their ability to carry out day-to-day activities.

If the survey asks questions about barriers in the workplace or adjustments, an employee might decide to tell you for the first time that they are experiencing difficulties in their work because of a disability. They might not tell their manager at the same time for a variety of reasons. For this reason, before you ask the question, you must have a process in place for each person who tells you that they are experiencing a barrier or disadvantage because of a disability to be contacted and for adjustments to be identified and implemented for them in a timely fashion. If this is not done, you are at risk of disability discrimination claims for a failure to make reasonable adjustments from employees unhappy that you have asked them about their disability but then taken no action to support them.

Recruitment

Many organisations include a diversity monitoring form in their recruitment process. If you do this or are thinking of introducing such a monitoring form the first thing to ask yourself is why you are collecting this information and what you are going to do with it.

If you simply want to know how many people who identify as disabled are applying to you as an organisation or for a particular role then this survey should be anonymous. You should also make it clear that it will not go to the shortlisting or interview panel. Remember to tell candidates why you are collecting the information and what you will do with it.

A monitoring form is not a good way to ask if candidates need adjustments for the recruitment process. Give candidates a variety of ways to contact you – e.g. by email and telephone – if they want to discuss the recruitment process or any adjustments they need in order to participate fully. It is good practice to tell candidates from the outset what the process will be – e.g. application by c.v. followed by an in-person or online interview with a panel of four interviewees and a presentation by the candidate. This enables the candidate to identify any potential barriers and to ask for adjustments. Remember, you need to know about the barriers and adjustments and not the actual disability.

It is unlawful under the Equality Act 2010 (and in legislation in many other countries) to ask candidates questions about their health or disability prior to job offer apart from in some restricted circumstances, such as where the question relates to an intrinsic function of the job. This means that candidates must not be asked to complete medical questionnaires prior to a job offer or any questions at the interview about their health, sickness absence record or asked any questions about their health, sickness absence record or disability including how they will do the job or adjustments they will need to do the job.

After the job offer has been made and accepted, conversations with the successful candidate can begin on how they will do the job and any adjustments that they need. A new appointee might not tell you about any adjustments at this stage (and might not know that they will need adjustments) and so their manager will need to ask them again as they settle into the role at regular catch-up meetings.

Language – what to ask and why

The language you choose to use should be determined by why you are asking and what you plan to do with the information (see above).

‘Do you have or do you consider yourself…’

Whether you use ‘do you have’ or ‘do you consider’ depends on why you are asking the question

• If you are measuring you simply want to know ‘how many’ disabled people are applying for a role or are in a workforce, ‘do you have’ is fine.
• If you want to know how many people consider themselves to be ‘disabled’ as a measure of self-identity, ‘do you consider’ may be more appropriate.

Legal language

Some organisations use language based on legislation such as:

‘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?’

Such language isn’t always well understood and might not lead to the results you want.

‘Physical and mental’

Business Disability Forum’s research shows that people with disabilities and conditions do not always distinguish between ‘physical’ or ‘mental’. It is common, for example, for someone with fibromyalgia to describe their condition in terms of “feeling low” or “feeling drained”, although it is a ‘physical’ condition. Similarly, it can be common for people who struggle with communication or who have a learning disability to say their “stomach hurts,” when in fact they are experiencing depression. These examples show that people do not always separate ‘physical’ and ‘mental’ because the reality of how they ‘live’ their disability or condition is through experiencing the symptoms, rather than any diagnosis.

‘In the last 12 months or more’

There is rarely a definitive point at which a person can locate when their condition or disability started. There are of course exceptions, such as disability through injury, accident, or from birth. For the most part, conditions and disabilities are acquired over time and people rarely know for sure when this will have started (especially in the context of increased NHS waiting times where a confirmation of a diagnosis can be prolonged).

People who are asked ‘how long’ a situation has been going on for them often respond with something like: “I noticed I increasingly wasn’t feeling too well over a few months last year”, or: “it came on gradually and I almost didn’t notice at first, but looking back I realise…”.

‘Reduce your ability to carry out day to day activities’

Why do you want to know if the person has a disability or condition that reduces their ability to carry out day-to-day activities? This is the language used in the Equality Act to help determine if someone meets the legal definition of disability, but it isn’t useful for an employer. As an employer you want to know if someone is having difficulty or will have difficulty doing any aspect of their job because of their disability and if so, you need to make adjustments to help them overcome or reduce the impact of that barrier. Knowing that their condition has an impact on their activities outside their role with you isn’t relevant.

‘Long-term condition’ or ‘long-term health condition’

Instead of the phrase ‘disability and long-term health condition,’ consider using ‘disability and long-term condition’. This is because not all long-term conditions are ‘health’ conditions; for example, employees with dyslexia may feel they don’t fit into either ‘disability’ or ‘health’ categories. ‘Long-term condition’ is, therefore, more inclusive term.

‘Declare’ and ‘disclose’

Asking people ‘disclose’ a disability suggests that the disability or health condition is a secret. It might well be something that an individual doesn’t want to talk about to their employer or indeed anyone but if you want to encourage an open and inclusive environment where people can bring their whole and authentic self to work this language might be counterproductive.

‘Declaring’ that you have a disability suggests a big announcement when the disability or health condition is just a fact of someone’s life and not ‘a big deal’ as this language suggests. It also has some legal associations such as ‘anything to declare’ at customs points.

‘Declaration’ or ‘disclosure’ is also the language used when candidates are asked if they have criminal convictions during the recruitment process.

The law and ‘declare’ and ‘disclose’

The language of declaration and disclosure also suggests that there is a legal obligation on the employee to tell their employer about a disability or condition. This is not the case in the UK and in many other countries. Employees do not have to tell their employer that they have a disability or health condition except in some very specific circumstances such as where:

• the disability or health condition poses a genuine health and safety risk either to the individual or someone else;
• the disability or health condition has a direct impact on the person’s ability to do their job – e.g. they no longer having a driving licence;
• the employee needs an adjustment in order to be able to perform their duties or role.

Share not declare

Research such as Secrets and Big News suggests that disabled applicants and candidates are less likely to say they have a disability or condition when they are asked to ‘declare’ or ‘disclose’ it. It is better to use more neutral language such as ‘please tell us if you have a disability or condition’ or ‘would you like to share information about a disability or long-term condition?’ or ‘please tell us if you need support or an adjustment’.

Condition-specific categories

If you want more detailed data, you might consider asking what category or type of disability people have or consider themselves to have. As ever, if you plan to ask for this information, be clear on why you want to know and what you are going to do with the information. For example, do you want to know if people with a particular type of disability are under-represented in your organisation or in some roles or at some grades or levels of seniority? If so, what plans have you considered how to address this if what you suspect proves to be true?

If you do want to ask about subcategories, here are some suggestions – but remember you may need to give examples so people realise that you meant their condition:

1. Hearing loss
2. Speech related condition e.g. a stammer or stutter
3. Sight loss
4. Mobility issues e.g. using a wheelchair or crutches some or all of the time or being unable to walk more than short distances
5. Mental health conditions e.g. depression, anxiety, Bi-Polar
6. Work related stress
7. Dyslexia
8. Autism
9. Other neurodiverse conditions e.g. dyscalculia or ADHD
10. Musculoskeletal conditions for example, back, neck shoulder or arm conditions
11. Energy limiting condition for example chronic fatigue or fibromyalgia
12. Learning disability
13. Long-term condition for example diabetes, multiple sclerosis, heart conditions, epilepsy, or chronic pain
14. Manual dexterity conditions e.g. arthritis
15. Migraines
16. Other (please specify)
17. None: No disabilities or long-term conditions
18. Prefer not to say

For more information 

Contact Business Disability Forum’s Advice Service and the team will be happy to answer your questions.

Email: advice@businessdisabilityforum.org.uk

Telephone: +44-20-7089-2400