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?

Beyond urgent: COVID-19 vaccination and people with learning disabilities

 This blogpost both updates a previous more detailed blogpost about this and tries to make an urgent case for why the entire adult population of people with learning disabilities in England (and those providing daily care and support for people, including family members and paid support workers) should be a top priority for COVID-19 vaccination now.

People with learning disabilities are at much higher risk of death from COVID-19 than the general population, with COVID-19 death rates for people with learning disabilities aged 55-64 higher than death rates for the general population aged 75+, and much higher than death rates for the general population aged 65-74. COVID-19 death rates for every age group of adults with learning disabilities aged 35 years upwards (35-44; 45-54; 55-64) are higher than general population COVID-19 death rates for people aged 65-74, who are a higher priority for vaccination.

The analysis above is based on the first peak of the COVID-19 pandemic in England. The graph below shows weekly information on the number of COVID-19 deaths of people with learning disabilities notified to the LeDeR programme up to 1st January 2021. Although not at the levels of the first peak, there is clearly a sustained and very serious second wave of deaths for people with learning disabilities that has been ongoing since October. This graph will also underestimate the number of COVID-19 deaths of people with learning disabilities for two reasons: 1) notifications of deaths can take time (particularly over holiday periods such as Christmas and New Year), so figures for very recent weeks will increase further as these notifications come into the LeDeR programme; 2) the LeDeR programme is not mandatory, and it is estimated that notifications to LeDeR are 65% of the actual number of deaths of people with learning disabilities. So far, 925 COVID-19 deaths of people with learning disabilities have been notified to the LeDeR programme – which would suggest that around 1,420 people with learning disabilities in England have actually died of COVID-19.

 

Because of gross health inequalities that already existed pre-COVID, with people with learning disabilities dying 15-20 years earlier on average than the general population, relatively few people with learning disabilities live into the older age brackets that are a priority for COVID-19 vaccination.

The table below is from the excellent @COVID19actuary group, in a report discussing vaccination priorities. Among other things, it shows (for England and Wales) the population added at each COVID-19 vaccination priority level, and where possible an estimate of how many vaccinations needed to prevent one death (as far as I can tell, this is the additional population in each vaccination group divided by the number of COVID-19 deaths of people in that group). 

 

Based on a variety of sources, I would estimate that (out of a total of around 240,000 adults with learning disabilities in England registered as such with their GP, which itself is a severe underestimate of the number of adults with learning disabilities living in England), the following numbers of people with learning disabilities might be within these vaccination groups:

Group 1: 6,000 people with learning disabilities aged 65+ in a care home (2.5% of adults with learning disabilities)

Group 2: 2,500 people with learning disabilities aged 80+ not living in care homes (1% of adults with learning disabilities)

Group 3: 2,500 people with learning disabilities aged 75-79 not living in care homes (1% of adults with learning disabilities)

Group 4: 6,000 people with learning disabilities aged 70-74 not living in care homes (2.5% of adults with learning disabilities)

Clinical extremely vulnerable (CEV). Very hard to estimate for adults with learning disabilities aged 16-64 (for reasons that are extremely important and I will return to later). People with Down syndrome are included in the CEV group, and people with learning disabilities are more likely to experience some of the other health conditions listed under CEV, so maybe 30,000 adults with learning disabilities (12.5% of adults with learning disabilities)

Group 5: 7,500 adults with learning disabilities aged 65-69 not living in care homes (3% of adults with learning disabilities)

At this point, the @COVID19 actuary table suggests that 16.7 million people in England and Wales will have received a COVID-19 vaccine, of which less than 55,000 will be people with learning disabilities. The table also suggests that, as vaccination proceeds through the priority groups, the number of vaccinations needed to prevent one death increases rapidly. For adults with learning disabilities as a total population, if 1,420 people with learning disabilities have died from COVID-19 so far out of a population of 240,000, then 169 vaccinations are needed to prevent the death of one person with learning disabilities. This is the same level as people aged 80+ in Vaccination Group 2 (160 vaccinations needed to prevent the death of one person).

Group 6. I found it impossible to come up with an estimate of the number of adults with learning disabilities aged 16-64 who would fit into the list of underlying conditions placing people at greater risk. This list explicitly includes people with ‘severe and profound learning disabilities’, and people with learning disabilities are more likely to experience the types of health conditions (e.g. diabetes) that are on this list, but we do not have the information to estimate the number of people with learning disabilities who count in this vaccination group.

Most adults with learning disabilities do not live in the care homes (especially care homes for older people) targeted in COVID-19 vaccination priority groups. Only 16% of adults with learning disabilities aged 18-64 getting long-term social care live in care or nursing homes, and the most common living situation of adults with learning disabilities aged 18-64 is living with their family (36% of people). Both people with learning disabilities living in supported living and living with families have been an extremely low priority for PPE, COVID-19 testing and ongoing support from most health and social care services, despite extremely difficult services that are taking a real toll on people and those supporting them. If frontline workers are a COVID-19 vaccination priority, then so should family members with direct caring responsibilities.

Practically, health information systems do not reliably record the type of information that would be needed to decide whether a person with learning disabilities should be included in the Clinically Extremely Vulnerable or Underlying Health Conditions vaccination priority groups. For example, GP records do not always record something as straightforward as whether a person has Down syndrome (which will qualify someone for the CEV vaccination group), and very rarely record whether the GP considers a person to be a person with severe or profound learning disabilities (which will qualify someone for the Underlying Health Conditions vaccination priority group). We also don’t have good evidence for the most part to pinpoint who within the population of people with learning disabilities is at particular risk (and who is not at risk), but we do know that the population of adults with learning disabilities as a whole is at much greater risk (and at younger ages) than the population generally.

As we saw in Wave 1 of the COVID-19 pandemic (triaging protocols for treatment, blanket DNARs etc), the existing health system discrimination experienced by people with learning disabilities gets worse when health systems are under intense pressure. Current vaccination priorities will incentivise complicated eligibility policing for people with learning disabilities, which rarely ends well for people. A lack of national focus on COVID-19 vaccines for people with learning disabilities means the potential for discrimination is greatly increased, and means a lack of attention to providing the reasonable adjustments that some people will need to get the COVID-19 vaccine safely. An interim analysis of 179 adults with learning disabilities across the UK, from the @CoronavirusLD project, recently reported that 80% of people with learning disabilities said they would take the COVID-19 vaccine, with most of the rest unsure.

There is an infrastructure to support COVID-19 vaccinations for all adults with learning disabilities, particularly learning disability nurses, who are in ideal position to mobilise a national COVID-19 vaccination effort for people with learning disabilities. 

Compared to the scale of the COVID-19 vaccination rollout, the population of adults with learning disabilities is relatively small. Social care support staff should be included within the existing COVID-19 vaccination priority groups. Alongside people with learning disabilities, family members providing direct care and support should also be a high priority for the COVID-19 vaccine – their risk is at least as high as people paid to provide care and support.

So – as in my previous blogpost in November, my proposal is really straightforward, although this is now urgent as the COVID-19 vaccination programme is up and running. Put adults with learning disabilities of all ages (registered with GPs if you need an institutional peg) as one of the most urgent priorities for COVID-19 vaccinations. In total this would be around 240,000 people known to GPs in England, a fairly small population in the grand scheme of what is being proposed with vaccinations, and working through GP registrations there is an infrastructure there to find people without the need for complicated gatekeeping. An equal priority for vaccination would be people who are in regular, close contact with the person, including family (many of whom are likely to be in current high priority vaccination categories anyway) and paid workers supporting people. Learning disability nurses provide an existing infrastructure to mobilise a national COVID-19 vaccination programme for people with learning disabilities. As well as saving lives amongst a group of people who already get a raw deal from health services and continue to be disproportionately hit by COVID-19, just think what a difference it will make to people’s anxiety when restrictions and lockdowns may have taken a real toll.