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Struggling to be heard: understanding the experience of disabled people in England

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More than ever disabled people are facing barriers to living well, so it is concerning that the census might not be capturing the true picture of disability in England, and that disabled people struggle to be heard.

Disabled people earn less and have higher living costs on average than those who are not disabled, so it is unsurprising that the cost-of-living crisis has had more of an impact on disabled people. 50 per cent of disabled people report that due to the rising cost of living, they are now spending less on food and other essentials, compared to 38 per cent of people who aren’t disabled. Evidence also suggests that disabled people wait longer for NHS treatment than those who aren’t disabled.

'Evidence also suggests that disabled people wait longer for NHS treatment than those who aren’t disabled.'

These are just two examples of the struggles faced by many disabled people in England. It is therefore vitally important that we know who is disabled, and what they need. One of the ways this can be done is through the census data, but are these numbers accurate?

The 2021 census found that a smaller proportion of people were disabled in England than in 2011 – 17.7 per cent in 2021, compared to 19.3 per cent in 2011. But this contrasts with other sources that show disability rates increasing:

What explains these differences? One reason might be the timing of the census – it was completed in March 2021, in the middle of the Covid-19 pandemic. This could have had an impact on people’s perceptions of their health (the proportion of people reporting very good health increased) and disability status. This was also too early for the impact of long covid on disability rates to be fully included.

A second reason could be the change in the wording of the census question:

  • In 2011 the question asked: ‘Are your day-to-day activities limited because of a health problem or disability which has lasted, or is expected to last, at least 12 months? Include problems related to old age.’

  • In 2021 the question asked: ‘Do you have any physical or mental health conditions or illnesses lasting or expected to last 12 months or more?’ If yes, ‘Do any of your conditions or illnesses reduce your ability to carry out day-to-day activities?’

As shown above, problems relating to old age were mentioned in the 2011 census but not in 2021. And in the 2021 census there was a sharp fall in the rate of older people reporting disabilities – 82 per cent of 85-89-year-olds reported a disability in 2011, but this fell to 54 per cent in 2021. This contrasts with a rise in disability rates among younger people.

Title: Reported disability rates fell sharply for older people between the 2011 and 2021 census.  The graph shows that this is true across all age categories, from 20 - 90+

We can therefore conclude that relying too heavily on census numbers is risky, as the timing and wording of the data collection will have impacted on the results. And comparing these results with other sources suggests that the number of disabled people may be underestimated, which could have a negative impact on future policy decisions if these decisions are based on census data alone.

Evidence already suggests that people are struggling to access the care and services they need. Hospital waiting lists are growing, and more people are requesting social care but fewer are receiving it. Without knowing the numbers of those who need support, these issues will worsen.

It is also important to remember that numbers alone do not tell the whole story of disability. Without hearing from those with lived experience, we cannot understand what disabled people need or design policies that are most useful for them.

It is also important to remember that numbers alone do not tell the whole story of disability.

But too often this doesn’t happen – disabled people frequently report struggling to be heard or believed. And too often involvement can feel tokenistic rather than meaningful. A recent report from The King’s Fund and Disability Rights UK has also highlighted this, noting the ‘need to value disabled people’s expertise through properly recognising the value of lived experience and ensure disabled people’s voices are central to any plans right from the start.’

We need to know how many disabled people there are in England. And we need to hear from them directly, to understand the diversity of their needs and experiences. Without this, the struggles faced by many, already high, will continue to grow.