Social care statistics and adults with learning disabilities - 2018/19 update

For various reasons it’s been a long time since I’ve had the time and energy to blog – apologies (either for the length of time since the last one or for writing one now, depending on your preference). This morning I’m off for the kids’ half-term and they won’t get up until lunchtime, so I thought I’d treat myself (yes, I’m aware how that sounds…). NHS Digital have recently released their annual tranche of statistics concerning social care for adults in England, and this blogpost updates previous posts to include information for 2018/19.

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 2018/19 can be found here and here.

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 show 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 2018/19 (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 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 community 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. 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 2018/19 they still represented 19% of all adults with learning disabilities aged 18-64 getting long-term social care.

In total (including 15 people who were identified as receiving long-term social care in prison) 133,575 adults with learning disabilities aged 18-64 were getting long-term social care in 2018/19, an increase of 7.5% in the four 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), using the same vertical axis as the graph above for ease of comparison.

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 gradually 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 continues to increase, representing in 2018/19 39% of all older adults with learning disabilities getting long-term social care.

In total (including another 15 people who were identified as receiving long-term social care in prison) 17,045 adults with learning disabilities aged 65 or over were getting long-term social care in 2018/19, an increase of 17.0% in the four 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.

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 units 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 property be termed fees) are not adjusted for inflation.

In 2018/19 the average fee of residential care for adults with learning disabilities aged 18-64 was £1,523 per week, compared to the next most expensive £1,233 for adults aged 18-64 needing sensory support. Nursing care for adults with learning disabilities aged 18-64 was charged at an average £1,316 per week, compared to the next most expensive £917 per week for people needing support with memory and cognition. Residential care for adults with learning disabilities aged 65+ was an average £1,033 per week, compared to the next most expensive £626 per week for older people needing support with memory and cognition. Finally, nursing care for older adults with learning disabilities was an average £836 per week, compared to the next most expensive £697 per week for older people needing support with memory and cognition.

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 2019 there would be 169,551 adults with learning disabilities needing social care support, compared to the 150,620 adults actually getting long-term social care support in 2018/19.

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 2018/19. In terms of what was happening in 2018/19, 3,300 adults with learning disabilities (95% of whom were aged 18-64) came to social services as new clients. Of these, 13% (430 people) were identified as having no needs and therefore requiring no services, and very few (10 people) were identified as self-funders. By far the most common response from social services was to signpost people to universal services or other forms of non-social care support (2,110 people; 64%). Relatively few people (160 people; 5%) went on to get some form of low level or short-term support from social care, with slightly more people (255 people; 8%) going on to get some form of long-term social care support. Very few (35 people; 1%) declined a service that was offered. Over time, there seems to have been a steady increase from 2014/15 to 2017/18 then a particularly sharp increase to 2018/19, almost wholly accounted for by signposting to universal services or other non-social care support. 

Different people I respect have different views on the desirability or otherwise of the patterns shown here – for some it shows social care busily trying to fend off people coming to them for help, for others it shows that social care services are getting better at finding ways to support people retain their independence as citizens without sucking them into the maw of potentially overbearing long-term social care services which people don’t need and might end up being actively unhelpful. Whatever the interpretation of this information, it does show a sharp increase in the number of adults with learning disabilities trying to get some form of social care support.

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’ – i.e. for almost everyone living with family. In 2018/19 this applied to 49,170 people, 37% of all working age adults with learning disabilities getting long-term social care, with numbers rising rapidly (up 10% in the four years from 2014/15). The number of working age adults in some form of supported accommodation, according to these figures, has been rising rapidly but seems to be stalling in 2018/19 at 29,170 people (22% of working age adults getting long-term social care support). The number of people in residential care, after a consistent decline over a number of years, again seems to have stalled in 2018/19 at 21,150 people (16%), while the relatively small number of working age adults with learning disabilities in nursing homes remains fairly static at 1,045 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 2018/19 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 – it is unknown 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 405 people in these places in 2018/19, with their reported numbers continuing to drop over time. This number is far fewer than the 2000-3500 number of people reported 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 6,185 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 increased again in 2018/19.

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 2018/19, 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 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 £4.98 billion in 2014/15 to £5.82 billion in 2018/19, although an annual inflation rate of 3% would pretty much wipe this increase out. Second, almost the entire social care budget (98.7%) is spent on long-term support rather than short-term support. Third, despite absolute increases in most categories of expenditure (not adjusted for inflation), in 2018/19 there were small absolute reductions in both short-term and long-term ‘other’ community social care support. Finally, social care spending on residential and nursing care for adults with learning disabilities still represents 35.8% of all social care expenditure on adults with learning disabilities.

I know this blogpost is turning into something of an epic (it might be a while before I find the time to post again) but there are two final important issues I want to quickly cover before I finish.

The first of these is variation across local authorities, otherwise known as the postcode lottery. Whatever you choose to look at in terms of social care for adults with learning disabilities, there is massive variation across local authorities in how many adults with learning disabilities they are supporting, what kind of support people are getting, and how much local authorities are spending. Two examples (these are using 2017/18 data, but the picture is the same every year I’ve looked at it) – the number of adults with learning disabilities getting long-term social care support and gross expenditure on social care for adults with learning disabilities. Because local authorities can be very different in how many people live in their area, I have converted these to rates per 100,000 local population.

In the graph below, each bar represents a local authority, arranged from lowest to highest. In the authorities to the left of the graph, they are providing long-term social care for around 200 adults with learning disabilities per 100,000 of everybody in the local adult population. Towards the right-hand end of the graph, this is getting up to 500 people per 100,000 local adult population or in a couple of extreme cases up to around 650 people per 100,000 local adult population.

The next graph has a similar format, but it’s about social care spending on long-term social care for adults with learning disabilities per 100,000 local population. Again, depending where you are living, your council could be spending three times as much per head on long-term social care for adults with learning disabilities than the council next door.

There are good reasons to expect some variation across local authorities in both the number of people with learning disabilities needing social care (things like area deprivation will make a difference) and therefore social care spending, but these variations seem much bigger than that.

The final thing I want to mention 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 17,765 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, 47.3% of people with learning disabilities completing the survey had help from a care worker, compared to 15.8% of people with physical support needs and 35.2% 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.

I hope that this blogpost is useful in giving an overview of the latest social care statistics as they relate to adults with learning disabilities. Apologies for its epic length – at least I can guarantee that there won’t be another one coming along for a while!