Building Back Better or The New Normal? Social care statistics and adults with learning disabilities in England

NHS Digital have recently released their annual tranche of statistics concerning social care for adults in England (thanks to @GrahamTAtkins for alerting me to them). This blogpost is the latest in a series about social care statistics concerning adults with learning disabilities in England, updating the statistics to include the latest 2020/21 figures. Because the reporting year for these statistics runs from April to March, these are the first annual statistics that might tell us something about the impact of the COVID-19 pandemic on social care services for adults with learning disabilities. When looking through these statistics it is important to remember the pressures local authorities have been under, which might have affected the quality of the information collected for these statistics.

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). I've tried to use some of the statistics to answer three questions.

Question 1: How many adults with learning disabilities were getting access to social care in 2020/2021?

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.

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 at some point during the year from 2014/15 to 2020/21), and also the number of adults aged 18-64 in residential or nursing care.

This graph suggests that trends evident from 2014/15 to 2018/19 (before the COVID-19 pandemic) have continued through to 2019/20 (the end of the financial year 2019/20 was when the first peak of COVID-19 was starting to hit) and 2020/21 (through the first and second/third peaks of the pandemic), although even within these relatively insensitive statistics there are signs of some differences in 2020/21. 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 is now the second most common vehicle for long-term social care support, although recent increases appear to have stalled in 2020/21. 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 2020/21 they still represent 18% of all adults with learning disabilities aged 18-64 getting long-term social care.

In total 133,670 adults with learning disabilities aged 18-64 were getting long-term social care at some point in 2020/21. While there had been a steady trend of increasing numbers of adults with learning disabilities getting long-term social care year on year from 2014/15 to 2019/20, from 2019/20 to 2020/21 there was a decrease of 1,760 in the number of people getting long-term social care. Although the statistics cannot tell us the reasons for this, a big part of the reason is, bluntly, that so many people with learning disabilities have died during the COVID-19 pandemic, with the peak age of death for people with learning disabilities from COVID-19 being 55-64. Extrapolating from notifications of people’s deaths to the LeDeR programme (which is estimated to pick up 65% of the deaths of people with learning disabilities), over 2,500 people with learning disabilities to date in England are likely to have died from COVID-19.

The second graph below presents the same information for adults with learning disabilities aged 65+. 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. These trends have continued into 2020/21. The number of older adults with learning disabilities in both residential care and nursing care fluctuates over time, but a broad trend of increases over time from 2014/15 to 2019/20 was not continued into 2020/21, where there decreases in the number of people aged 65+ in both residential and nursing care.

In total 17,895 adults with learning disabilities aged 65 or over were getting long-term social care at some point in 2020/21, continuing a steady upwards trend from 2014/15.

 

However, the statistics I’ve presented so far are for people getting long-term social care at some point in each year. This may under-estimate the impact of COVID-19 on the number of people currently getting social care, particularly where people have died during the year. The NHS Digital statistics also have snapshot figures on the number of people with learning disabilities getting adult social care at the end of each financial year, which we can compare to the number of people getting social care at some point during the year. The graph below shows this information for adults with learning disabilities aged 18-64, from 2014/15 to 2020/21. In 2020/21, there is a clear reversal in the upward trend, with both people getting long-term social care at some point in the year (133,670 people) and people getting long-term social care support at the end of the financial year (125,480 people) falling from the year before.

 

The next graph below shows the same information for people aged 65+. While the number of people getting long-term social care support at some point in the year continues to increase into 2020/21, the number of people getting long-term care at the end of the 2020/21 financial year has dropped compared to 2019/20 (this also dropped from 2018/19 to 2019/20).

 

While these statistics are difficult to interpret, there were 1,500 fewer adults with learning disabilities of all ages getting long-term social care at the end of March 2021 compared to the same time the year before.

  

Question 2: What happened to people trying to get a social care service?

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 2020/21. 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 or other forms of non-social care support than in any other year. There seems to be an upward trend in the number of adults with learning disabilities coming to the attention of social services from 2014/15 to 2018/19, followed by a decrease from 2018/19 through to 2020/21.

In terms of what was happening in 2020/21, 820 adults with learning disabilities (almost all of whom were aged 18-64) came to social services as new clients. Of these, 37% (305 people) were identified as having no needs and therefore requiring no services. For 12% (100 people) the response from social services was to signpost people to universal services or other forms of non-social care support. Relatively few people (85 people; 10%) went on to get some form of low level or short-term support from social care, with slightly more people (165 people; 20%) going on to get some form of long-term social care support. Very few (25 people; 3%) declined a service that was offered. 

Throughout the pandemic, the number of adults with learning disabilities coming to the attention of social care declined, with a minority of this group getting any form of social care support during the COVID-19 pandemic beyond signposting elsewhere. 

 

Question 3: How much money were councils spending on social care services for adults with learning disabilities?

The graph below shows gross expenditure by local authorities on social care for adults with learning disabilities from 2014/15 to 2020/21, broken down by age band and categories of spending. 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.

 

A couple of observations. Overall, despite the number of adults getting social care decreasing during 2020/21, social services expenditure continued its steady upwards trajectory in absolute terms in 2020/21 at an annual growth rate of 4% from 2014/15. Local authority expenditure on social care for adults with learning disabilities totalled £6.3 billion in 2020/21, 39% of all local authority expenditure on adult social care. The two line graphs below show trends in expenditure on specific types of social care service for adults with learning disabilities aged 18-64 and 65+ (with different scales for the two age groups). Spending on residential care is still the biggest category of expenditure, although spending on supported living is rapidly catching up, and spending on home care continues to decline.

 

Unit costs for residential care and nursing care for adults with learning disabilities continued their upward trend in 2020/21. For adults aged 18-64, the average cost to local authorities of residential care was £1,687 per person per week and nursing care £1,446 per person per week. Unit costs were cheaper in 2020/21 for adults aged 65+ compared to adults aged 18-64 (£1,126 per person per week in residential care; £914 per person per week in nursing care), although unit costs are higher for these services for adults with learning disabilities than for any other group of people getting social care.

 

To sum up, it seems like the COVID-19 pandemic has largely magnified longer term trends in social care services and expenditure for adults with learning disabilities. The big, and grim, difference is that 1,500 fewer adults were getting long-term social care at the end of March 2021 compared to the end of March 2020. However, there is a question about how sensitive these statistics are to the seismic changes to people’s social care support that people with learning disabilities have been reporting throughout the COVID-19 pandemic. For example, in the Coronavirus and people with learning disabilities project many people reported paying for social care services they weren’t currently getting, getting less of a service than they used to, or some services which involved going out being replaced by online services, none of which would be picked up by these statistics. With local authority expenditure on social care services for adults with learning disabilities still increasing (and now representing 39% of all adult social care expenditure) even though fewer people are being supported (how much expenditure is on 'voids'?), are local authorities going to ‘build back better’, or is this now ‘the new normal’?