Disability benefits, people with learning disabilities and autistic people - update

This is a quick blogpost about disability benefit statistics, people with learning disabilities and autistic people, updating one from about a year ago, with figures mainly up to May 2020. All these figures are obtained from the excellent DWP Stat-Xplore online tool. I’m going to talk about three disability benefits here:

1) Disability Living Allowance. The Disability Living Allowance (DLA) is a tax-free benefit for disabled people who need help with mobility or care costs. Disability Living Allowance (except for those born before 9 April 1948 and those aged under 16 at the time of application) is being replaced by Personal Independence Payments. The DLA consists of two components which are assessed and paid separately, a Care Award (paid at higher, middle and lower rates) and a Mobility Award (paid at higher and lower rates).

The Department for Work and Pensions (DWP) provides quarterly information on Disability Living Allowance (DLA), that can be disaggregated for adults with ‘learning difficulties’ in England. The DWP definition of ‘learning difficulties’ includes ‘learning difficulties’’ (an old generic code still used for pre-2008 cases before more detailed sub-categories were introduced), ‘Down’s syndrome’, ‘Fragile X syndrome’, ‘learning disability – Other/type not known’, ‘Autism’, ‘Asperger syndrome’, and ‘Retts disorder’². This definition is much broader than other government departments’ definitions of the population of people with learning disabilities.

2) Attendance Allowance (AA), which is paid to disabled people over the age of 65 to help with personal care. This can be paid at two rates to reflect the level of care required, and in the statistics uses the same broad definition of ‘learning difficulties’ as the DLA statistics.

3) Personal Independence Payment (PIP); a benefit for adults with sickness and/or disability replacing the DLA, but with some important differences. Information on the PIP is available on a monthly basis for adults with learning disabilities, under the category ‘Main Disabling Condition/Psychiatric Disorders/Learning Disability Global’, and for autistic people under the label ‘Main Disabling Condition/Psychiatric Disorders/Autistic Spectrum Disorders’.

In this blogpost I’m trying to get a sense of how many people with learning disabilities and autistic people (I’m assuming that the broader category of ‘learning difficulties’ is mainly these two groups of people) have been getting some form of disability benefit over time. To help with this, I’ve looked at four broad age groups: children and young people (age 0-15 for DLA); younger working age adults (age 16-44 for DLA and PIP); older working age adults (age 45-64 for DLA and PIP); and older adults (age 65+ for DLA, PIP and AA). The graphs include people getting payment for the benefit concerned, and are either people with ‘learning difficulties’ (DLA and AA) or, separately, people with learning disabilities and autistic people (PIP).

What do we find? The first graph shows how many children and young people with ‘learning difficulties’ received DLA (the only one of these three benefits where children and young people are eligible), from May 2012 to May 2020. The graph shows a steady increase in the number of children and young people with ‘learning difficulties’ getting DLA, with if anything a faster rate of increase in recent years, up to 219,099 people in May 2020.

The next graph below shows information for younger working age adults (aged 16 to 44), from May 2012 to May 2020, and includes both the DLA and the introduction of the PIP. As more and more people transfer from DLA to PIP there is a rapid decrease in the number of younger working age adults with ‘learning difficulties’ getting the DLA, and similar rises in the number of people with learning disabilities and autistic people getting a PIP. The grey line in this graph shows the combined total of people getting one of these disability benefits. This shows some fluctuations over time, with year-on-year increases punctuated by a dip in 2016 and no real change from 2018 to 2019. By May 2020 206,597 younger working age adults with learning difficulties, learning disabilities, or autistic younger working age adults, were getting either DLA or PIP.

The third graph, below, has the same information for older working age adults with learning difficulties aged 45-64 (note that the vertical scale for this graph is different to the previous ones, as the overall numbers are smaller). This graph also shows a rapid decrease in the number of people getting DLA from 2012 to 2019, with a sharp rise in the number of people with learning disabilities getting PIP but relatively few autistic people getting PIP. The combined total for this age group shows a much slower rate of increase for people getting either disability benefit, with slight decreases from 2018 onwards. By May 2020 59,976 older working age adults with learning difficulties, learning disabilities, or autistic older working age adults, were getting either DLA or PIP.

The final graph (again with a different vertical scale as the number of people is much smaller) has information on the number of older people with ‘learning difficulties’ (DLA, AA) or older people with learning disabilities or autistic people (PIP) getting one of these disability benefits. The number of older adults with learning difficulties getting AA is relatively small and has gradually declined from 2012 to 2020. As with older working age adults, sharp increases in the number of older people getting DLA is accompanied by a sharp increase in the number of older adults with learning disabilities getting PIP but relatively few older autistic adults getting PIP. Overall, the number of older adults with learning difficulties, learning disabilities or autistic older adults getting one of these disability benefits has steadily increased from 2012 to 2020, but the rate of increase has slowed over time. By May 2020 18,695 older adults with learning difficulties, learning disabilities, or autistic older adults, were getting either DLA, AA or PIP.

I’m very happy for others to make more informed interpretations of these statistics than me, and I’m very happy to people to tell me about errors I have made in putting together the information for this blogpost. From my limited understanding of the statistics in these graphs, a couple of things leap out at me:

1) The increasing numbers of children and young people with ‘learning difficulties’ getting DLA is in sharp contrast to the number of adults of all ages getting some form of disability benefit. Is this because autistic children are more likely to be recognised and deemed to be eligible for DLA? And what happens when these children and young people grow up and have to go through the process of transfer to PIP?

2) It looks to me like fewer adults of all ages are eligible for PIP than have been eligible for other disability benefits in the past, so previous increases in the number of adults getting some of disability benefit (which you would expect from population predictions of the number of adults with learning disabilities) have stalled in all adult age groups. 

3) Where are the middle-aged and older autistic people? Whereas identification might be more comprehensive and improving for children, young people, and younger working age autistic adults, identification of older autistic people (certainly to the point of being eligible for a disability benefit) does not seem to be improving at anything like the same rate.

Overall, if population predictions are correct there should be more people with learning disabilities and more autistic people of all ages over time becoming eligible for a disability benefit. The figures here suggest that while we are still seeing this for children and young people (where PIP does not apply), we are no longer seeing it for adults of any age. What are the consequences of this for all those people who should be getting a disability benefit to help them flourish, both now and in the future?

And of course there is the final question of what impact the COVID-19 pandemic will have had on the number of people with learning disabilities and autistic people getting these disability benefits?