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.