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.

Social care statistics and adults with learning disabilities in England - 2019/20 update

NHS Digital have recently released their annual tranche of statistics concerning social care for adults in England, and this blogpost updates previous posts about social care for adults with learning disabilities to include information for 2019/20. Because the reporting year for these statistics runs from April to March, we will not really be able to see what effect COVID-19, and social care responses to COVID-19, will have had on these social care statistics until information for 2020/21 is published, probably around this time next year.

Councils with social services responsibilities return information to NHS Digital every year on how many adults are using various forms of social care, and how much councils spend on social care (this doesn’t include other types of state funding relevant to social care, such as housing benefit as part of supported living support). When looking at trends over time it’s important to remember that there were big changes in the way information was collected between 2013/14 and 2014/15, the one with the biggest impact being that up to 2013/14 most information was collected on people known to social services whereas from 2014/15 onwards most information is collected only on people getting ‘long-term’ social care. Most of the information for 2019/20 can be found here and here (although for many of the graphs here I have had to dig into the depths of CSV files).

First, how many adults with learning disabilities are getting access to social care? From 2014/15 the types of long-term social care support people get have been grouped into one of six mutually exclusive categories: residential care, nursing care, direct payment only, support via a personal budget partly including a direct payment, a council-managed personal budget, and council-commissioned community support only. For most of these categories there is also equivalent information from 2009/10.

The first graph below shows the number of adults with learning disabilities aged 18-64 getting various types of personal budget or council-commissioned community support from 2009/10 to 2019/20 (bearing in mind the change in data collection between 2013/14 and 2014/15), and also the number of adults aged 18-64 in residential or nursing care.

This graph shows that trends evident from 2009/10 to 2018/19 have largely continued through to 2019/20. Adults with learning disabilities aged 18-64 were most commonly getting support in the form of council-managed personal budgets (the extent to which most of these feel any different to council-commissioned services is debatable). The number of people getting support in the form of direct payment only or with part-direct payment has been consistently rising over time, and is now the second most common vehicle for long-term social care support, although the number of people getting a direct payment only seems to be stalling. The number of people getting council-commissioned community support only continues to decrease.

In terms of residential and nursing care, the graph shows that although the number of adults aged 18-64 in residential care and nursing care continues to gradually decline over time, in 2019/20 they still represented 18% of all adults with learning disabilities aged 18-64 getting long-term social care.

In total 135,430 adults with learning disabilities aged 18-64 were getting long-term social care in 2019/20, an increase of 9% in the five years from 2014/15.

The second graph below presents the same information for adults with learning disabilities aged 65+, from 2014/15 (when the information first became available). Please note that, because the number of people with learning disabilities aged 65+ using social care is much smaller compared to people aged 18-64, I have used a different vertical scale.

Again, council-managed personal budgets are the most common form of community-based support for older adults. These, along with other forms of personal budget, are continuing to increase over time while the number of adults getting council-commissioned community services only continues to decrease. The number of older adults with learning disabilities in both residential care and nursing care fluctuates over time, representing in 2019/20 38% of all older adults with learning disabilities getting long-term social care.

In total 17,715 adults with learning disabilities aged 65 or over were getting long-term social care in 2019/20, an increase of 22% in the five years from 2014/15.

It’s also highly likely that these figures under-represent the number of people with learning disabilities in residential and nursing care. From 2014-15 everyone using social care is allocated to a single category of ‘primary need’ – learning disabilities is one of these categories, but it is also possible that a person with learning disabilities may be allocated to a different ‘primary need’ such as physical support, sensory support, mental health support, or support with memory and cognition (e.g. dementia). We don’t know the extent to which people with learning disabilities, particularly as they get older, are re-assigned to a different category and potentially moved into generic residential or nursing care places for older people.

The temptation for cash-strapped commissioners to do this is strong as residential and nursing care for people with learning disabilities are a lot more expensive than residential and nursing care for other groups, and residential and nursing care for people aged 18-64 are much more expensive than residential and nursing care for people aged 65+. The graph below shows the unit costs for residential and nursing care for adults with learning disabilities aged 18-64 (from 2009/10) and for older adults (from 2014/15). It is really important to remember that these costs (which should more properly be termed fees) are not adjusted for inflation.

In 2019/20 the average fee of residential care for adults with learning disabilities aged 18-64 was £1,583 per week (the next most expensive average fee was for people with sensory needs, at £1,181 per week). Nursing care for adults with learning disabilities aged 18-64 was charged at an average £1,2716 per week (the next most expensive average fee was for people needing support with memory and cognition, at £964 per week).  

Residential care for adults with learning disabilities aged 65+ was an average £1,063 per week (the next most expensive average fee was for people with sensory needs, at £675 per week). Finally, nursing care for older adults with learning disabilities was an average £881 per week (the next most expensive average fee was for people needing support with memory and cognition, at £730 per week). 

While residential care fees have steadily risen in recent years, nursing care fees have on average risen but also fluctuated over time.

It is also extremely likely that more adults with learning disabilities could do with social care support than are currently getting it. Although there are no longer any national statistics that directly address this issue, there are a couple of ways to think about it.

First, the information I’ve quoted so far shows that even in the last five years the number of adults with learning disabilities getting social care support has continued to increase. However, the increases we see are nowhere enough to keep up with the likely increase in the number of adults with learning disabilities needing social care support according to population projections. In 2012, a team led by Eric Emerson produced some projections of the number of adults with learning disabilities likely to need social care support up to 2030. Even under the most restrictive funding scenario (with only people with critical or substantial needs getting social care support) we estimated that by 2020 there would be 172,802 adults with learning disabilities needing social care support, compared to the 153,145 adults actually getting long-term social care support in 2019/20.

Second, although it is limited, adult social care statistics also include information on new people coming to the attention of social care services, and what happens to them after a ‘completed episode of short-term care to maximise independence’ (which to my untutored eye looks functionally equivalent to assessment). The graph below shows this information for all adults with learning disabilities aged 18+, from 2014/15 to 2019/20. Looking at the graph, 2018/19 looks like a bit of an anomaly, largely due to much higher numbers of people being signposted to universal services of other forms of non-social care support than in any other year. Without the 2018/19 data, there seems to be a more gradual upward trend in the number of adults with learning disabilities coming to the attention of social services.

In terms of what was happening in 2019/20, 1,190 adults with learning disabilities (almost all of whom were aged 18-64) came to social services as new clients. Of these, 33% (395 people) were identified as having no needs and therefore requiring no services, and very few (10 people) were identified as self-funders. For 22% (265 people) the response from social services was to signpost people to universal services or other forms of non-social care support. Relatively few people (120 people; 10%) went on to get some form of low level or short-term support from social care, with slightly more people (195 people; 16%) going on to get some form of long-term social care support. Few people  (50 people; 4%) declined a service that was offered.

In terms of the living situations of adults with learning disabilities, from 2009/10 councils have provided a detailed breakdown on where they think adults with learning disabilities aged 18-64 are living. The differences between information up to 2013/14 (on everyone known to councils) and information from 2014/15 (on people getting long-term social care support) are pretty stark here, as most numbers are considerably lower in 2014/15 compared to 2013/14. The graph below is very complicated as there are a lot of categories, but there are a couple of things that stand out for me.

First, by far the most common living situation for adults with learning disabilities aged 18-64 is ‘settled mainstream housing with family/friends’ – (in practice for almost everyone living with family). In 2019/20 this applied to 49,070 people, 36% of all working age adults with learning disabilities getting long-term social care, with numbers rising (up 10% in the five years from 2014/15). The number of working age adults in some form of supported accommodation, according to these figures, has been rising rapidly - in 2019/20 this was 31,160 people (23% of working age adults getting long-term social care support). The number of people in residential care has continued to decline – in 2019/20 this was 20,095 people (15%), while the relatively small number of working age adults with learning disabilities in nursing homes remains fairly static at 970 people (1%). The number of people in some other types of support, such as tenancies and shared lives arrangements, has fluctuated from 2014/15 to 2019/20 with few consistent upward or downward trends over time.

In 2017/18 I reported a small but rapidly rising number of working age adults with learning disabilities in various types of obviously temporary accommodation (short-term stay with family/friends, council-provided temporary accommodation and other temporary accommodation), rising by 32% in three years from 1,205 people in 2014/15 to 1,590 people in 2017/18. In 2018/19 this had reduced again to 1,195 people but in 2019/20 this had increased again to 1,425 people – I don't know what this substantial fluctuation is about. And the figures reported by social services don’t include most adults with learning disabilities in inpatient services - councils only recorded 370 people in these places in 2019/20, with their reported numbers continuing to drop over time. This number is far fewer than the 2,000 - 3,500  people in NHS Digital statistics recorded by health commissioners or providers – whilst most of the people with learning disabilities in inpatient services will not be directly funded by social care these figures do cast considerable doubt on the reality of policy aspirations to pooled funding and the readiness and willingness of social care services to support people to come out of these places.

Finally, it is important to note that for 6,770 working age adults with learning disabilities getting long-term social support their living situation was unknown to the local authority providing the support – this number had been decreasing but has increased substantially from 2017/18 to 2019/20.

  

How much money are councils spending on social care services for adults with learning disabilities? The graph shows this gross expenditure from 2014/15 to 2019/20, broken down by age band and categories of spending, although it is important to remember that these figures do not include housing benefit (an essential component of supported living arrangements). These figures are also not adjusted for inflation, although the squeeze on social care spending has meant that social care inflation has been relatively low in recent years.

A couple of observations. Overall, the amount of social care funding for adults with learning disabilities continues to increase in absolute terms, from £5 billion in 2014/15 to £6.1 billion in 2019/20, although a relatively small inflation rate would pretty much wipe this increase out. Second, almost the entire social care budget (98.8%) is spent on long-term support rather than short-term support. Finally, social care spending on residential and nursing care for adults with learning disabilities still represents 34.1% of all social care expenditure on adults with learning disabilities.

The final thing I want to repeat from last year's blogpost is the point that Neil Crowther has made in his recent synthesis review of evidence on deinstitutionalisation throughout Europe – that the statistics I’ve talked about here mainly report on the number of people using, and spending on, specialised services of various kinds. There is much less information about how people experience their lives, and whether people have the opportunity to exercise their rights and live their lives how they want. The final graph below is from the other set of social care statistics released yesterday, the Adult Social Care Survey. This is a major exercise conducted via local authorities every year to survey thousands of adults using long-term social care to gain exactly the kind of information that Neil discusses. The graph below shows the percentage of adults with learning disabilities getting long-term social care in the survey (at least 16,000 people) reporting on their quality of life, how satisfied they were with the services they were getting, how good their health was generally, and about if they felt anxious or depressed on the day. The graph also has comparative information from adults with physical support needs and adults with mental health needs who responded to the survey.

The survey is very carefully designed and conducted, including an easy-read version available to anyone who wants it. I think this graph shows that there are unavoidable limitations to conducting a survey in this way to get this kind of information. First, people with learning disabilities report everything as being much better (this is true across pretty much all the questions in the survey) than other people, which I can’t help thinking is because far more people with learning disabilities get help to complete the survey than other groups. For example, 45% of people with learning disabilities completing the survey had help from a care worker, compared to 16% of people with physical support needs and 34% of people with mental health support needs. Second, for the most part levels of satisfaction etc are pretty high and are not changing much over time. There is a long strand of research suggesting that people adapt to their circumstances, even if their circumstances don’t look great to an outsider, and I am worried that using high levels of satisfaction as the most important indicator of ‘success’ will hide poor (or absent) support and the constrained lives that many people may be living.

To summarise, the social care statistics presented here suggest that existing trends continued into 2019/20 - more adults with learning disabilities getting long-term social care support (with accompanying small increases in expenditure over time), but not enough to keep up with the numbers of adults with learning disabilities likely to benefit from social care support. More adults with learning disabilities are getting social care in some form of personal budget, with more people living in supported accommodation, continuing to live with their families, and living in some form of temporary accommodation. While the numbers of adults with learning disabilities living in residential or nursing care continue to gradually decline, spending on residential and nursing care is still over a third of the total social care budget for this group of people.

Going through these statistics while continuing to go through the COVID-19 pandemic, I'm wondering how responsive these statistics will be to the massive changes in social care support people with learning disabilities have experienced during the pandemic, and how relevant and fit for purpose these statistics are to the things that really matter to people. including how social care can be part of the infrastructure everyone needs to lead a fulfilling life. The adult social care statistics currently being collected are undergoing a review, which is apparently due to report fairly soon. I will be really interested to see what is recommended.

COVID-19 and non-COVID deaths among people with learning disabilities in England - what happened through 2020?

 As we come to the end of a grim 2020, this short blogpost will go through weekly statistics on the deaths of people with learning disabilities in England from COVID-19 and non-COVID causes through 2020. I have been putting updates on this information in tweet threads but I haven't put them into a blogpost for quite a while. 

There are two sources of weekly information about COVID-19 deaths amongst people with learning disabilities. The first is the LeDeR programme, originally set up to facilitate local reviews of the deaths of people with learning disabilities in England. It is national in scope but notifications of deaths to the programme are not mandatory. On its notification form, the LeDeR programme started asking about COVID-19 deaths on 16th March 2020, relatively early on in the pandemic. NHS England/Improvement have been publishing weekly information on suspected or confirmed COVID-19 deaths and deaths from non-COVID-19 causes from the LeDeR programme for some time, including a weekly easy read summary.

The first graph below shows the number of people with learning disabilities who died from COVID-19 each week throughout 2020 (the first column on the left is all COVID-19 deaths from when the LeDeR programme started recording COVID-19 deaths up to 20th March). It is important to note that all numbers made public are rounded to the nearest 5, and that if there are fewer than 5 deaths in a week the number is suppressed (standard practice to prevent potential identification of people). 

This graph shows that the number of people with learning disabilities who died from COVID-19 rose very rapidly during the first peak of the pandemic in England and reduced to virtually zero by the end of June. Through the summer very few COVID-19 deaths of people with learning disabilities were reported, but from October to the end of the year the number of people with learning disabilities dying from COVID-19 has increased again but to nothing like the levels in the first peak.

Overall, the LeDeR programme has reported that 840 people with learning disabilities in England have died from COVID-19 up to the 11th December 2020. A Public Health England analysis of this information through the first peak of the pandemic estimated that 65% of deaths of people with learning disabilities were notified to the LeDeR programme - using this estimate would suggest that almost 1,300 people with learning disabilities in England have died from COVID-19.

The second graph below adds in people with learning disabilities dying from non-COVID causes throughout 2020 (the blue columns). The first blue column on the left is so large because it includes all non-COVID deaths from the start of 2020 up to 20th March - after this the blue columns are weekly deaths from non-COVID causes. It is worth noting that the figures for very recent weeks tend to under-report deaths from either COVID-19 or non-COVID causes as notifications of deaths can come in some time after the person has died - the LeDeR programme updates these numbers as notifications come in. 

This graph shows that weekly deaths from non-COVID causes fluctuate from week to week, but don't seem to be particularly high or low at times when COVID-19 deaths are high or low. In total, the LeDeR programme has reported that 2,095 people with learning disabilities have died from non-COVID causes in 2020 up to 11th December. Assuming the same level of under-notification deaths I mentioned earlier, the estimate would be that over 3,200 people with learning disabilities dies from non-COVID causes in 2020 up to 11th December.

Have more people with learning disabilities in England died from COVID-19 and non-COVID causes combined compared to previous years? This is hard to know as good information from previous years isn't available on the number of deaths of people with learning disabilities. As a crude indicator, I have taken the average number of deaths per week reported to the LeDeR programme in 2019 and added this to the graph below as a green line.

In the first part of the year, pre-COVID, many fewer deaths of people with learning disabilities were notified to the LeDeR programme compared to the average for that number of weeks in 2019. I don't know why this is - the LeDeR programme reports some fluctuations throughout 2019 as you would expect, but not to this extent.

Beyond this, during the first peak of the pandemic three times as many people with learning disabilities were dying from COVID-19 and non-COVID causes combined compared to 2019. Once the first peak died down the number of people with learning disabilities dying from COVID-19 and non-COVID causes has been roughly similar to average levels of deaths in 2019.

A second, less comprehensive, source of information is on people who have died from confirmed COVID-19 in hospitals on a weekly basis through 2020. This information, also published by NHS England/Improvement, started flagging people with learning disabilities and autistic people in this dataset from 24th March, although over 20% of people have not been flagged at all (whether they are a person with learning disabilities or an autistic people, or not). 

The graph below shows the number of people flagged as a person with learning disabilities or autistic person who died from confirmed COVID-19 in hospitals from 24th March up to 16th December 2020. The first column on the left is so large because it covers 6 weeks rather than 1 week, at the height of the first peak of the pandemic. 

This graph shows a similar pattern over time to the LeDeR information on COVID-19 deaths I discussed above - large numbers of people dying in the first peak of the pandemic, falling to very few deaths in the summer but starting to increase again from October onwards (although not anywhere near the level of the first peak).

Overall, this dataset reports that 663 people with learning disabilities in England died of confirmed COVID-19 in hospital in England. If we assume that unflagged people include people with learning disabilities and autistic in the same proportion as flagged people, this figure would be almost 840 people.

In the first peak of the pandemic, these figures suggested that people with learning disabilities and autistic were 4-5 times more likely to die than you would expect from the number of people with learning disabilities registered with GPs. So far in the second peak, it looks like people with learning disabilities and autistic people are twice as likely to die than you would expect - an improvement on the first peak, but still a very high figure.

The final graph below just puts all this information together into a graph on the cumulative number of people with learning disabilities who have died COVID-19 and non-COVID=19 deaths over 2020 according to these two data sources. I'm not sure it adds much, but maybe it's helpful as an alternative way of visualising the information.

I don't want to add a lot of commentary to this, but there are three things I will say:

1) The number of people with learning disabilities who died from COVID-19 in the first peak of the pandemic should be a permanent stain on the reputation of people in a position to do something about this who were warned early on and did nothing.

2) We cannot be complacent about what is happening to people with learning disabilities during the second peak of the pandemic in England - this peak is not over yet and we are in the depths of winter after, for many people with learning disabilities, long periods of isolation and restriction.

3) To my mind, this is yet further evidence for people with learning disabilities as a population to be prioritised for the COVID-19 vaccine. Dithering about this or ignoring it until it's too late is not good enough - people and services need to start preparing now if vaccinating people with learning disabilities is to happen comprehensively.

Paid employment and adults with learning disabilities in England - a 2019/2020 update

This blogpost updates previous posts on what the statistics say about the self/paid employment of working age (aged 18-64 years old) adults with learning disabilities in England. These figures are provided by local authorities every year, and since 2014/15 have only been provided for people getting long-term social care (before 2014/15 it was the larger group of people known to local authorities as a person with learning disabilities, even if they weren't getting long-term social care support). This means that these figures don't include the much, much larger group of adults with learning disabilities who aren't known to local authorities or GPs and who don't get any kind of support related to their learning disability.

It is important to note that these statistics are collected for financial years (April to March), so they will represent what was happening for adults with learning disabilities up to March 2020, before COVID-19 really hit.

Some of the numbers reported here are included in the NHS Digital Adult Social Care Outcomes Framework (indicator 1E, if you're interested), although some of the numbers are more buried in publicly available but less accessible CSV datafiles. 

What do the numbers tell us?

The first graph below shows the number of working age adults with learning disabilities that councils say are in any self/paid employment, broken down by whether people are in employment for 16+ hours per week or less than 16 hours per week (and 1 hour a week can count in these statistics). The gap between 2013/14 and 2014/15 is because of the change in data collection I mentioned earlier, so numbers before and after then can't be compared, and 2008/2009 was the first year that information was collected so it's rather dodgy for that year.

 

According to these figures, in 2019/20 there were 7,524 working age adults with learning disabilities getting long-term social care in any form of self/paid employment. After a couple of years of the number of people in paid/self employment edging towards 8,000, this a drop back to earlier years. Consistent across the years is that most of the people in employment (71% of people in 2019/20) are working for less than 16 hours per week.

What do these numbers mean in terms of employment rates? The graph below shows the employment rates for working age adults with learning disabilities over the same time period. The columns show the overall employment rate - in 2019/20 this was 5.6%, compared to 76.6% for adults generally in February 2020. This is the lowest employment rate for adults with learning disabilities recorded since the statistics were changed in 2014/15.

 The lines on the graph show employment rates for men and women with learning disabilities separately. Employment rates for men (the purple line) are consistently higher (6.2% in 2019/20) than employment rates for women (the blue line) (4.8% in 2019/20), with this gender employment gap staying fairly stable over time.

 

Employment rates are also very different across regions, as you can see in the next graph below which shows employment rates for different regions from 2014/15 to 2019/20. While there are some fluctuations over time (and there have been questions about the quality of the data), the East Midlands (3.6% in 2019/20), West Midlands (4.2%) and North West (4.3%) consistently report lower employment rates. London (7.0%) and recently the South East (6.9%) report the highest employment rates.

 

At an individual council level these differences in employment rates are even bigger, ranging from virtually 0% to over 20%. At the extreme ends, Portsmouth reported an employment rate of 0.2%, Hull 0.4%, Hammersmith & Fulham 0.7%, Gloucestershire 0.8% and County Durham 0.9%. At the opposite extreme, Wokingham reported an employment rate of 19.4%, Hartlepool 23.5% and Hounslow 26/8%.

The last graph below sounds an appropriate note of caution about the reliability of information on self/paid employment provided by councils. This shows, for all working age adults with learning disabilities getting long-term social care, whether councils say they are: 1) in self-paid employment; 2) not in employment but actively seeking work (and presumably therefore liable to potential benefit sanctions); 3) not in employment but not actively seeking work. There is also a fourth category, where councils say they don't know the employment status of the person.

 

Over time, the number of people whose employment status is unknown has decreased rapidly, from 44% of working age adults with learning disabilities in 2014/15 to 22% of people in 2019/20 (22% is still a big chunk, however). It is unclear how councils are making decisions about whether to record someone as actively seeking work or not.

Overall, this update shows, even before COVID-19 really hit, reducing employment rates (from a ridiculously low base) for working age adults with learning disabilities getting long-term social care, with most work being extremely part-time, a gender employment gap and big and scarcely explicable differences in employment rates across areas. 

As far as we know, many more than 5.6% of working age adults with learning disabilities want to work. We know that secure, stable paid employment for people with learning disabilities is associated with better physical and mental health, and we know that supported employment is highly cost-effective. This is one clear case where we should be able to do much better than the pre-COVID-19 status quo.

 

 

COVID-19 vaccination and people with learning disabilities – where should people with learning disabilities come in the list of priorities?

News of the potential effectiveness of COVID-19 vaccines has started to focus attention on priorities – as batches of the vaccine become available, who should be prioritised to get them first? This post sets out some of the evidence that, to my mind at least, builds a case for people with learning disabilities being a much higher priority for COVID-19 vaccinations than is currently being suggested.

What is the current suggested priority list for the COVID-19 vaccination? Here is the most recent interim advice from the Joint Committee on Vaccination and Immunisation (JCVI), published in September:

“This interim ranking of priorities is a combination of clinical risk stratification and an age-based approach, which should optimise both targeting and deliverability. A provisional ranking of prioritisation for persons at-risk is set out below:

• ·    older adults’ resident in a care home and care home workers
• ·       all those 80 years of age and over and health and social care workers
• ·       all those 75 years of age and over
• ·       all those 70 years of age and over
• ·       all those 65 years of age and over
• ·       high-risk adults under 65 years of age
• ·       moderate-risk adults under 65 years of age
• ·       all those 60 years of age and over
• ·       all those 55 years of age and over
• ·       all those 50 years of age and over
• ·       rest of the population (priority to be determined)^”

As you can see, this is heavily weighted towards older people aged 65 or over. Using ONS 2019 population estimates, this would mean that over 10 million people aged over 65 in England (and a majority of the 600,000 care and nursing home workforce who will be working with older people) would get COVID-19 vaccinations before anyone aged under 65, no matter what their risks of dying from COVID-19.

This is going to be a serious problem for people with learning disabilities.

The recent authoritative Public Health England analysis of COVID-19 deaths amongst people with learning disabilities in the first wave of the pandemic reported rates of death 3-6 times higher amongst people with learning disabilities compared to people generally. These rates of death become even more disproportionate at younger (adult) ages, with a peak age of COVID-19 deaths at age 55-64. The PHE analysis of LeDeR notifications suggests that COVID-19 death rates for people with learning disabilities aged 55-64 are higher than death rates for the general population aged 75+, and much higher than death rates for the general population aged 65-74 (see the graph below, copied from the PHE report). 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 PHE report also shows that, because people with learning disabilities were dying 15-20 years younger than other people even before COVID-19 hit, there are only around 13,000 older adults aged 65+ registered with GPs in England. For the general population, vaccinating everyone aged 65+ will cover around 24% of the adult population. For people with learning disabilities, vaccinating everyone aged 65+ will only cover around 5% of all adults with learning disabilities registered with GPs (there are around 240,00 adults with learning disabilities aged 18-64 registered with GPs). [UPDATE 2nd Dec 2020 - I made a couple of errors here. There are around 25,000 older adults with learning disabilities out of around 250,000 adults with learning disabilities registered with GPs. So it's 10% rather than 5% - the general point still stands however].

Going down the vaccination priority list, once the 10 million+ people aged 65 or over and care/nursing home workers for older people have been vaccinated, the next priorities are people aged under 65 who are ‘high risk’, then people aged under 65 who are ‘moderate risk’.

I’m assuming that people defined as ‘high risk’ are in one of the ‘clinically extremely vulnerable’ groups used in the 18^th November government guidance on shielding. The full list in the guidance is here:

“Adults with the following conditions are automatically deemed clinically extremely vulnerable:

• ·       solid organ transplant recipients
• ·       those with specific cancers:
• o   people with cancer who are undergoing active chemotherapy
• o   people with lung cancer who are undergoing radical radiotherapy
• o   people with cancers of the blood or bone marrow such as leukaemia, lymphoma or myeloma who are at any stage of treatment
• o   people having immunotherapy or other continuing antibody treatments for cancer
• o   people having other targeted cancer treatments that can affect the immune system, such as protein kinase inhibitors or PARP inhibitors
• o   people who have had bone marrow or stem cell transplants in the last 6 months or who are still taking immunosuppression drugs
• ·       those with severe respiratory conditions including all cystic fibrosis, severe asthma and severe chronic obstructive pulmonary disease (COPD)
• ·       those with rare diseases that significantly increase the risk of infections (such as severe combined immunodeficiency (SCID), homozygous sickle cell disease)
• ·       those on immunosuppression therapies sufficient to significantly increase risk of infection
• ·       adults with Down’s syndrome
• ·       adults on dialysis or with chronic kidney disease (stage 5)
• ·       pregnant women with significant heart disease, congenital or acquired
• ·       other people who have also been classed as clinically extremely vulnerable, based on clinical judgement and an assessment of their needs. GPs and hospital clinicians have been provided with guidance to support these decisions”

You will notice that adults with Down syndrome are on this list, presumably because of recent research reporting more people with Down syndrome than other people with learning disabilities are dying of COVID-19. For some health conditions on this list, particularly for those aged under 65, people with learning disabilities are more likely to experience them than other people, including severe respiratory conditions and chronic kidney disease.  

Going down to the next priority level for COVID-19 vaccination, those at ‘moderate risk’, again people with learning disabilities aged under 65 are more likely than other people to experience a range of the health issues in the ‘moderate risk’ list below, including: lung conditions, heart disease, diabetes, chronic kidney disease (yes I know it appears in both lists – I’m not the person to ask why this is), and being very overweight.  

“People at moderate risk from coronavirus include people who:

• ·       are 70 or older
• ·       have a lung condition that's not severe (such as asthma, COPD, emphysema or bronchitis)
• ·       have heart disease (such as heart failure)
• ·       have diabetes
• ·       have chronic kidney disease
• ·       have liver disease (such as hepatitis)
• ·       have a condition affecting the brain or nerves (such as Parkinson's disease, motor neurone disease, multiple sclerosis or cerebral palsy)
• ·       have a condition that means they have a high risk of getting infections
• ·       are taking medicine that can affect the immune system (such as low doses of steroids)
• ·       are very obese (a BMI of 40 or above)
• ·       are pregnant”

We don’t know how many adults with learning disabilities aged under 65 are experiencing one or more of these ‘moderate risks’ (as people often have more than one health issue), and we also know very little about how health issues commonly experienced by people with learning disabilities (such as constipation, gastro-intestinal reflux and dysphagia, which can all be implicated in aspiration pneumonia for example) relate to risk of serious consequences of COVID-19.

So, as I understand it the current COVID-19 vaccination priority list will first get through well over 10 million vaccinations of people aged over 65 (which will include only 13,000 older adults with learning disabilities registered with GPs) and care/nursing home workers working with older people. Only then, through complex processes of gatekeeping, will adults aged under 65 with learning disabilities who are ‘clinically extremely vulnerable’ (an uncertain but likely fairly small proportion of people aged under 65 with learning disabilities) get the COVID-19 vaccine, as part of the approximately 1 million people in England aged under 65 who are on the shielded patient list.

And it is only after vaccinating approximately 12 million people will adults with learning disabilities aged under 65 at ‘moderate risk’ be vaccinated, involving even more complicated and uncertain gatekeeping, and where there are likely to be larger proportions of people aged under 65 with learning disabilities but still missing a lot of people with relevant health issues.

 

So, in summary I think this priority list for COVID-19 vaccinations will vaccinate over 10 million older people and care workers first, which will only include around 13,000 older adults with learning disabilities. At this point the vaccination process will have missed 95% of adults with learning disabilities registered with GPs, even though death rates from COVID-19 for younger adults with learning disabilities from 35 years upwards are higher than those for the general population aged 65-74. Once the vaccination priority process moves on to adults aged under 65, the focus on the ‘clinically extremely vulnerable’ then those at ‘modest risk’ will involved complicated and inefficient gatekeeping, and will still miss large numbers of adults with learning disabilities with health conditions potentially putting them at risk. And this is before we even start thinking about the potential mental and physical health consequences of continued lockdowns and restrictions for people with learning disabilities and those who support them, whether family or paid workers.

 

My proposal is really straightforward. As with flu vaccinations now (and I know COVID-19 is definitely not flu, but many of the risk factors for people with learning disabilities are similar), 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 250,000 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. As well as saving lives amongst a group of people who already get a raw deal from health services and have been disproportionately hit by COVID-19, just think what a difference it will make to people being able to live their lives when restrictions and lockdowns may have taken a real toll.