Disability: When the numbers alone are simply not enough.

Statistically Speaking

In this episode, we focus on a powerful example of when the numbers alone are simply not enough. The most recent Census has told us how many people have some form of disability but to really understand the nature of those disabilities and the needs of people reporting them we need to do a lot more work.

Guiding us through this work, is Helen Colvin, joint lead for Census and Disability Analysis at the ONS; Shona Horter, Head of Qualitative Research at the ONS Centre for Equalities and Inclusion; David Ainslie, Principal Analyst in the Analytical Hub of ONS and Matt Mayhew, Senior Statistical Officer in the Policy Evidence and Analysis Team.

Transcript

MILES FLETCHER

Hello and welcome again to another edition of Statistically Speaking, the Office for National Statistics podcast.

In this series, we've spent a lot of time explaining how statistics can brilliantly illuminate important issues, and this time we're focusing on a powerful example of when the numbers alone are simply not enough.

The most recent census has told us how many people have some form of disability and where they live. It's a good place to start of course, but to really understand the nature of those disabilities, and the needs of the people reporting them, we need to do a lot more work and that work is the subject of today's discussion.

Here to guide us through it we have Helen Colvin, joint lead for Census disability analysis at the ONS; Shona Horter, head of qualitative research at the ONS Centre for equalities and inclusion; David Ainslie, Principal Analyst at the analytical hub of ONS; and Matt Mayhew, senior statistical officer in the policy evidence and analysis team.

Helen to start with you, I mentioned the census there and those numbers showing us the scale of disability as defined by Census. Is it fair to say that census remains the sort of statistical bedrock of our understanding of disability - the single most important source? HELEN COLVIN Yes that’s right. I'd agree with that. So it's the main source that covers the whole of our population. So it's the best truth that you have, if you like, of what our population is like, and the proportion of disabled people within our population. MF And these were people, responding in their households, to the question which said what precisely? HC It said: Do you have any physical or mental health conditions or illnesses lasting or expected to last 12 months or more? And if people answered yes to that, they were asked: Do any of your conditions or illnesses reduce your ability to carry out day to day activities? A lot, a little, or not at all. MF What did you have to answer to that to be classified as disabled? HC To be classified as disabled - If you answered that you had a long term condition which affects your day to day activities a lot or a little then we regarded that as somebody as disabled. And the reason for that is that at ONS we measure disability against the Equality Act definition of disability and that really identifies somebody as disabled if they have a long term condition, and if it limits their day to day activities. And we do that so that we're able to report against the progress on the Equality Act in the UK. MF And the key element it would seem that - obviously we're talking about disability - is your ability to do day to day tasks and a sustained limitation. HC That's right, that needs to be... to be disabled under the Equality Act there needs to be a long term thing which affects you for up to 12 months or more. And it needs to be something which does impact you on your ability to carry out day to day activities. And that's really something that is arguably focusing on the medical model of disability, so focuses on how you can't do things because of your impairment because of the environment around you. MF Now that question is slightly different from the one asked in 2011. Why was that changed? HC So in 2011, we asked a very similar question, but we did remove a prompt which asked people to include problems specifically related to old age and this really was about bringing it more in line with the Equality Act, which doesn't have that emphasis. Problems related to older ages still classified as disability, but it wasn't making it the same kind of focus of the question, and another part that we changed was to remove the word disability because of course, disabled means different things to different people. And we tried to measure it slightly more objectively by using our own definition rather than asking about people's own opinions if they were disabled. And this time we also included mental health within the question, and we think that that could have influenced the raises that we saw among younger people. MF But how big an influence do we think that? HC So in census 2021, we did see an increase among younger people being classified as disabled compared to 2011. And this did stand out particularly for females slightly more than males. We think there was also possibly a real change in population at that time down to the pandemic, with more people showing signs around depression and mental health problems, particularly at the period that the census was conducted. MF And there remains of course, underlying all this. This is census data. This is people's own assessment of their ability. How is that benchmarked perhaps against other sources? HC So it's obviously a different measure from other sources. Other data might be more medically based, so GP records, that kind of thing, which is more based on actual conditions as opposed to disability. MF And do we think that some people perhaps consider themselves disabled who might not be defined as disabled under other circumstances? HC Absolutely. I think disability means different things to different people and some people who might be regarded as disabled under the Equality Act specifically wouldn't want themselves to be looked at that way. And conversely, some people which may not be captured by that definition, may want themselves to be, so there are many different ways you can conceptualise and define disability. So this is one way to try and do that and to measure disability in a slightly more objective way. MF And being defined as disabled within that census definition that you've set out for us, how does that match against other criteria of disability, perhaps when it comes to gaining access to benefits or services? HC So it has a different definition and a different way of being assessed. So for instance, if somebody wanted to access benefits, then there's a completely different threshold and set of criteria that they would need to meet through Work and Pensions. MF There's a tension there isn’t there, perhaps between people who answered in the affirmative on this on the Census but then wouldn't qualify as a disabled in the eyes of officialdom for want of a better word. HC Possibly, but we don't have that data within the ONS or around the DWP benefits data for this kind of use, to look at the match between our definition and the DWP assessment criteria. MF So you’ve shown us a complex picture there, tell us about the harmonisation work that's been going on across ONS to really develop and refine our understanding of disability as a concept. HC Yeah, so there's an ongoing programme of work, taking place to review the current harmonised standards and update them so that they can be more aligned with current conceptualization of disability impairments and conditions and try and ensure that they really relate to and reflect people's experiences. There's been a programme of research and engagement to find out the ways in which the standards are not currently performing, and what some of the key issues and gaps are, and that's due to be published in the end of March. And then the next step will be to outline in detail the plan over the coming year. So so far, the engagement activities have included speaking to data users, a variety of different organisations, government departments, charities, really including everyone across the spectrum, who are people who would use and engage with those harmonised standards to understand a bit more about the needs. And like I said, the kind of priorities and gaps and then the next step will be undertaking research to think about how best can we change and update those standards so that they, like I said, are really reflective and current. And one thing in particular that needs to be looked at being included is adding neurodiversity as a potential category. So at the moment that's not currently listed within the impairment categories. And so feedback has been that many people who are neurodiverse don't identify with the current kind of categorization and wording that's used. So that will be really important going forward. MF And that’s also an important reflection of the constantly changing perception of what disability is in society. And from that the challenge of assessing and measuring it, Helen on the Census we've recently published our results as we've already mentioned in this discussion, but would you like to unpack those for us? We know that the number of disabled people went up since 2011. HC Yes, that's right. So the number of disabled people went up, but the actual overall proportion of disabled people fell in the population. And it's important to state that we standardise this data. And that's a statistical method which enables us to, to kind of compare like with like, so it accounts for the different population age structure between 2011 and 2021. So in 2021, we saw a slight fall in the proportion of disabled people in the population. So it's currently 18% in England falling from 19% in 2011. And in Wales, it's now 21% falling from 23% in 2011. MF And what were the drivers of that? That's a fascinating find. HC That’s right. So some people might be slightly surprised by that, but it is a small decrease which we might expect to find in a population where people are living longer and healthier life expectancy is improving. And there may have been other influences such as the pandemic. So asking people how they feel about their health and disability during the pandemic may have affected how they responded as well. MF But how does the data break down by region, and by age and by gender? HC Say for gender, we saw that females were more likely to be disabled than males. And we had a particularly interesting finding around older people. So there was a big decrease among older people who've been disabled in 2021 Compared to 2011. And that was particularly true among those who were limited a lot by their disability. Obviously, we've talked about the question change where we removed a prompt, which then include problems related to old age, so that may have reduced the number of older people thinking of their conditions as a part of a disability. But we did see that that data was the same for the health question which preceded it as well. So we do think it's a real change in the population. And another aspect of that may have been due to Coronavirus. So we did very sadly see a lot of deaths among disabled people during COVID. But that wouldn't fully account for the changes that we've seen. So we think there's also an improvement in health of older people more generally as well. MF Oh, that's a reflection of the healthy life expectancy that we've discussed in other podcasts already, perhaps over and above the COVID factor that you mentioned.

HC

Yes, that's right.

MF

A greater prevalence of disability among younger people, and that was very much reflected, perhaps unsurprisingly, in deprived areas. HC Yes, that's right. So the change that we saw for younger people, again was stronger for females than for males. It was true for both genders, but females saw slightly higher proportions of disability than males. And that had increased particularly in the 20 to 24 age group, and the surrounding age groups to that, and that corresponds with some another analysis we've done where we found higher proportions of people with mental health problems, such as depression in those age groups. And we have the same outcome for health in general as well, where there is a correlation between that age group showing poorer health and more disability. MF So overall, is disability remaining fairly static from census to census? HC That's right. Well, we have seen the numbers of people have increased but the proportion as a population has stayed reasonably static. There are small falls, which does tally with the kind of improvements in health, but overall, it is showing the sorts of trends that we would expect, but we do see one in five people in the population as disabled, which is quite stark and does make us remember that we really need to think about how to improve the inequalities for this population. You mentioned just now about deprivation and deprivation among younger people, and that was an interesting finding we've had from the census data as well. It's not really a surprise to see that in deprived areas more people are likely to be disabled. But what we also found is that that occurs for younger age groups. So younger people in deprived areas are more likely to be disabled across all of the age groups than non-disabled people. MF That's the strength of the census of course, that you can get that really, really local picture of where disabled people are, as well as their overall numbers. HC Yes, and the index of Multiple Deprivation enables us to understand those areas that are more deprived or less deprived, so that we can look at those at a more aggregate level as well. MF Helen, thank you for taking us through the insight, fascinating insight, produced by the Census. But Shona, there is much more to the ONS’ work on understanding disability. Could you set out some of that for us? SHONA HORTER Yeah, of course. And I can start by just giving some brief background, there was an independent group of experts who were convened, following the request of the national Statistician in 2020, to look at the inclusivity of data and evidence across the UK more broadly, and to make recommendations as to how we can make a step-change to really ensure that everyone counts and is counted within data and evidence and that programme of work identified disability as one key area that we really need to ensure that questions and concepts are accurately reflecting the experiences of individuals. They also identified the need for more qualitative approaches as part of this. So, we need that alongside our quantitative data. We also need to be really speaking to people and understanding their lived experiences MF Because statistics and numbers, and to really understand people's experience of disability, we need to hear from them directly. SH Exactly, exactly. And the qualitative can also help us to understand the how and the why beyond the numbers, so we can understand more about the lived reality of people's experiences, the barriers that people face in daily life and people's views as to what could help to improve things going forward. But also, we can understand where we might see patterns in the data, we can actually look at what is the social context beyond what's happening on the ground that might be shaping those experiences. So it's a really, really important thing that we include alongside our statistics. MF So what sort of patterns have we been seeing from the data? Helen? HC Similar in ONS we collect quite a range of data that encapsulates different disabled people across some of the different data sources that we collect. So, one of the main surveys that we do is the annual population survey which captures people across the UK. Every year we collect data from about 320,000 people. And the picture that we're having from that data is, unfortunately that disabled people tend to fare less well across the things that we measure, say for instance, they're less likely to be happy, they're less likely to see their life as worthwhile, life satisfaction is poor and they're likely to be more anxious than non-disabled people. And we've also seen from other surveys, like the Community in Life Survey that shows that disabled people are more likely to feel lonely. So these are all not positive outcomes. But some of the more positive ones that we have seen around education data, for instance, is showing that the proportion of disabled people with a degree has been steadily climbing since 2014. And the proportion of those who have no education has been steadily falling. It's not as in-line with non-disabled people. So disabled people are still less likely to have degrees than their non-disabled counterparts, but it's still a positive trend that we do see, but that does unfortunately, then feed into things like employment data, which we'll talk about more shortly, but with disabled people less likely to be employed. They're also less likely to own their own homes and more likely to live in social housing. And when we look at the Crime Survey for England and Wales, we also see that disabled people are more likely to experience things like antisocial behaviour and problems with nuisance neighbours than non-disabled people. So it's unfortunately not a positive picture when we look at the data more generally for disabled people. MF Nonetheless, that statistical picture fleshes out quite considerably the understanding we get from the census. So far, we've discussed a variety of different insights on the outcomes for disabled people, but we haven't looked at their experience in the workforce and how being disabled can come with additional costs. David, what are our data telling us about that experience in the workplace and the restrictions as well as the opportunities? DAVID AINSLIE So data from the Labour Force Survey shows in the last three months of 2020 to the latest data, and considering just working age adults, about half of disabled adults are in employment, so that's around 5 million disabled adults. So, this compares with about 8 in 10 when you consider non-disabled adults, the gap and rate between these two groups has decreased slightly over the last decade. In 2013, the earliest comparison we can make is that 4 in 10 disabled adults are employed compared with around three quarters of non-disabled adults. Some analysis from the Department for Work and Pensions suggests there's a range of factors that contribute to why this gap has decreased only slightly in the last decade, the largest factor probably being the overall disability prevalence itself has increased over the last decade. This tends to suggest that more people in work are becoming disabled than necessarily disabled people becoming employed. And there are other factors too, like overall changes in the size of the working population and general employment trends over the period. MF So this is more a question really, of people being able to hang on to their jobs despite having a limiting condition? DA So yes, to an extent, there are some quite stark findings in analysis of longitudinal data from the Labour Force Survey, and this has suggested that disabled workers tend to move out of being employed over an annual period at around twice the rate of non-disabled workers, to about 9% compared to 5%. By contrast, disabled people not in employment tend to move into being employed over a 12 month period at around a third of the rate of non-disabled people. So, 10% versus 27% here. MF So what's the evidence of the ability to work from home as encouraging more disabled people into the workforce? DA So the general trend of a slightly closing employment gap has actually stalled a bit since the start of the COVID pandemic. More research is definitely needed here to see what the impact of the pandemic has been as well as to look at if there's an impact of an increased ability to work from home. It's worth noting that the pattern of occupations that disabled people and non-disabled people tend to work in look a little different. So in the latest data, data again from the Labour Force Survey, working disabled people were less likely to be working in things like management in professional occupations than non-disabled people, but more likely than non-disabled people to be in occupations that might have been shut down during the pandemic or those where you might have had to work closely with people. So occupations such as in caring and leisure, or in sales and customer service, type occupations. This will of course have had some impact on people's ability to work from home. Lastly on this, of people who are in work at the moment, the latest data from our opinions and lifestyle survey, show it's actually a fairly similar proportion of disabled and non -disabled adults report working from home, hybrid working or indeed travelling to work. MF So not a fantastic picture perhaps for those with lifetime limiting conditions. But what did the data tell us about pay between disabled and non-disabled people Matt, what is the earnings gap? MATT MAYHEW So there's a similar sort of negative picture here as well. So the latest data we have on the annual population survey from 2021, showed that disabled employees on average were paid around 14% less than non-disabled employees. The gap appears to have widened slightly since 2014, whereas this was about 12%. If you tally this in pounds and pence terms using the latest data, the average pay was around £12.10 pence per hour with disabled adults, compared to about £14.03 per hour for non-disabled adults. MF And David, what evidence do we have about how different types of disability affects your chances of being in work and earning money? DAVID AINSLIE So the definition of disability of course covers a wide range of people impacted by a whole variety of physical and mental health conditions and to different extents. So the averages we've described cover a really broad group. But we've explored the Labour Force Survey data further, we've looked at both employment rates and pay by a variety of factors that are important to these things, such as the severity of disability, the number of and types of health conditions people report having, as well as some other things. But for example, in the latest data, the lowest employment rates were seen among those who reported they had severe or specific learning difficulties, autism or any mental health conditions with employment rates around about 25 to 30%. At the other end of the scale, disabled adults whose impairments were due to hearing, or skin conditions or allergies, had the highest employment rates, around 60 to 70%. MF And is this a similar picture with pay, Matt? MATT MAYHEW So when we look at pay, there's a similar sort of variation. So the largest pay gap is for disabled boys reporting autism as their main health condition, who have been paid an average of about a third less than non -disabled employees without any health conditions. Whereas the next largest pay gap is with those with depression with 18% less. By contrast, on the other side of the scale, for those reporting difficulties with seeing, there was actually no pay gap observed between the two groups. And in fact, we observed for those difficulties in hearing, were on average paid about 5% more than non-disabled employees. Severity of impairment is important too. So the pay gap between disabled people who are limited a lot in their day-to-day activities and non-disabled adults is about 20%, whereas those where their condition limits them a little, about 12%.

Lastly, it's important to remember that when considering both pay and employment, that disabled and non-disabled people have patterns of other characteristics creating difference between them, such as age, sex, where they live, and the type of occupations they have, and they are quite often quite different. To look at this on the pay side we have modelled what the differences between the average pay of a disabled and non-disabled employee might look like, if the two groups have the same patterns or personal characteristics, similar ages, same sex distributions and job characteristics such as doing the same jobs, to see what effect that has. When we do this, the differences in the average pay between disabled and non-disabled employees are narrower but still persist between the two groups. MILES FLETCHER Shona, it's all very well to talk about a superimposed definition of disability, statistics tend to bring two issues, but our qualitative work has actually thrown up some fresh insights on what sort of characteristics make up disability? SHONA HORTER Yeah, and we've undertaken two quite large qualitative studies over the last year. One looking at the experiences of disabled adults accessing and engaging with activities, goods and services in the private sector and the other looking at the educational experiences of children and young people with special educational needs and disabilities. And through both those studies, we found a really a huge variation in people's experiences of disability or impairment. Many people have invisible impairments or conditions. People can have multiple impairments and comorbidities that can interact. So for example, physical conditions can be accompanied by mental health difficulties. And there can be a cyclical relationship that people describe as being catch-22. If you're struggling with your physical health, and that can exacerbate mental health, which can then cycle back into other challenges. So it's really important to understand that variety of experience and also how that can link to individuals' identity. So that can be a real process of adjusting to a diagnosis or to living with an impairment or condition and that can require adjusting one's own identity. And can also be different if you've recently acquired a condition or if you've had it for your whole life. And that's also linked to the social, so a lot of people spoke about anticipating judgement of others, being seen as different and the vulnerability that can come with that, and the anticipated stigma. So there are lots of reasons why people won't necessarily identify as disabled, or reasons why people may not identify with a specific condition, illness or impairment. And some young people also talked about diagnostic labels that they saw themselves as having such as dyslexia or autism. ADHD, that could help to explain their learning and support needs. But actually, many really didn't want to have labels that were used to justify any kind of different treatment, different opportunities and some rejected the label altogether. So it's really just understanding that nuance and the multifaceted nature of people's experiences and identity around this. MF And you made an interesting point there about disability that perhaps is invisible to others, unlike some forms of disability, which then people benefit from a recognition of that, but then others perhaps suffer from not having the disability recognised. SH Yeah, and that can be really complex. So we're working on a paper on that very topic at the moment that we're planning to publish soon, that actually that's another layer of, on the one hand, people describe being able to potentially hide having a condition or impairment that means that you might be able to avoid anticipated stigma, or discrimination or kind of negative reaction of the public but also, often people describe needing to disclose their condition or impairment in order to access the support that means they would be able to then access and engage with different areas of life so there can be quite a lot of vulnerability around that and that can also intersect with other characteristics. So people described the additional layers of vulnerability linked to gender linked to ethnicity that can form multiple, multiple layers of discrimination. MF And thereby we get to a much more useful understanding of, say a wider pattern of disadvantage generally. SH Yeah, and also really the need to understand me, what came through so clearly in both of these studies was the need to be flexible and to listen to and understand people's different needs. MF So this qualitative work is providing a much richer understanding of a wider pattern of disadvantage of which disability is but one factor. SH Yeah, and I think it really, these studies have both really highlighted the importance of having flexibility in listening to and understanding people's different needs. What we saw from both young people's perspectives and the perspectives of adults was really that just having that need for additional support. That means that you can fully and meaningfully participate in education and daily life in a range of different activities, goods and services. One of the particular difficulties I think, around invisible impairments that the findings presented was what people described as a need to prove their worthiness or prove their legitimacy of access to additional support needs. And that could bring an additional challenge, and also an additional level of stigma and vulnerability, that many people described facing backlash when, for example, having a lanyard or a badge that indicated the need for additional support. That there's that “disbelieveability” around that as well. So I think it was really emphasised through all our studies how important it is that there's increased awareness about people's different experiences and needs and that there's increased understanding and support for that put in place.

MF

And so the knowledge base continues to grow. The time of recording this, we're beginning to be able to step back and look at the pandemic period. What do we understand of that at the moment, in terms of its impact on disabled people at the time of the pandemic, and perhaps some of the lasting impacts and effects of it?

SH

Yeah, and I can comment briefly on the qualitative research there and Helen, it would be good to hear more about the quantitative findings on this. We found a really mixed picture in terms of experiences through the pandemic. So in some ways, the increased move to online services, groups, and education classes really opened up the world for people and could facilitate and support access and engagement and also could really support social contact. So many people described being able to join groups and networks that they hadn't previously been able to do as a result of, for example, physical access barriers. So that was really, really positive. But on the other hand, there was a real disadvantage for those who are digitally excluded. And we know that disabled people are disproportionately digitally excluded. Also in other ways the pandemic contributed to increased fear, increased isolation, so people talked about having increased social contact online, but that didn't necessarily replace the real in person activities and social contact. Some also found it quite difficult to engage and focus with online format. So particularly describing the cognitive demands that could be difficult for those with memory and learning, understanding or concentration impairments in particular, and real difficulties in accessing the required support. So SEN support was said to be quite slow to return to schools, and some children and young people with physical needs couldn't return to school safely without that support. So there was a kind of lasting impact there as well.

MF

And what's the future of the qualitative side of this work as well? Will that continue alongside the regular sources of overarching data?

SH

Yeah, I think it's important to continue to think about where we have gaps in our evidence and understanding and where there are questions that we can address qualitatively. And also considering having more mixed methods approaches. So where we can consider including qualitative components alongside our statistics to better understand some of these particular questions in more detail. So for example, one of the qualitative studies I've just mentioned was around the additional cost of disability. So, many people spoke about the additional financial costs like added premiums for insurance or for medical equipment compared to similar equipment that might be purchased by somebody who's not disabled, and we know that that's likely to become evermore difficult with the cost of living crisis. So whether that's an area that could warrant further exploration, I think it's just continuing to think about what are the key questions, evidence gaps and the needs for us to be addressing to ensure that we can inform policy and practice and make sure that our data is speaking to people's experiences and needs.

MF

Thank you, Shona. Helen, is there anything you'd like to add on that?

HELEN COLVIN

Yeah, absolutely. I think the work that Sona’s team have been doing around qualitative research with disabled people is so valuable for helping to really illustrate the findings that we tend to get from the aggregated data that ONS has been more traditionally producing this. So where during the pandemic those qualitative interviews really showed and highlighted the day to day situations that disabled people were living with, because alongside that we also ran a survey on the opinion survey about disabled people's access to products and services and the data that we had from that very much supported the sort of experiences that people were reporting to Shona. So we found that disabled people had more difficulty accessing products and services during the pandemic than non- disabled people, and much of that appeared to be down to difficulties using transport, having places to rest and with practical things like crossing the roads, crossing footpaths, and moving around buildings, which were evident in some of the sort of lived experience quotes that Shona’s team were picking up on as well.

MF

How to statisticians go about the whole question though of deciding whether it is disabilities that’s the driver here, or whether there are other factors that ought to be considered first?

HC

Yeah, good question. So we know that in a lot of the outcomes that we look at disabled people tend to fare worse than non-disabled people. This isn't likely to be down to just being disabled per se. We think it's more likely that no single factor is going to explain the kind of outcomes that we see. It's more likely that there is a range of disadvantages experienced by disabled people which lead to this difference for non-disabled and disabled people.

MF

Overall then, an awful lot of work is being done, a wealth of data and understanding, where's this work going now? And how it can inform really effective interventions and policies and services to support disabled people?

HC

As we mentioned, we measure disability against the Equality Act, and that's really crucial for us to be able to understand how as a country we are performing in terms of monitoring and reducing inequalities for disabled people. The data that we collect and publish then feeds directly to policy makers. So one of our key stakeholders for my team is the Cabinet Office and working with their disability units. We make sure that they have the information they need to make policy but also thinking about local authorities monitoring that policy impact, monitoring the outcomes in their area and thinking about what they can do in terms of planning to support disabled people. But also our data is used widely by the third sector and lobbyists to hold government to account, to look at these inequalities and say, what's happening here? What are you doing about this and of course, it's really valuable for the citizen users and public interest to know what the situation is for disabled people in our population. MF Well, that is it for another episode of Statistically Speaking, thanks very much to all our guests for another fascinating discussion. For news about these podcasts, and the work of the Office for National Statistics, and to comment or ask us a question, please find us on Twitter at @ONSFocus. That’s it from me Miles Fletcher. Our producer at the ONS is Julia Short. Thanks for listening, and until next time, goodbye.

ENDS