The missing thousands - social care statistics 2021/22 and people with learning disabilities (1)

NHS Digital have recently released their annual tranche of statistics concerning social care for adults in England. 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 2021/22 figures. Because the reporting year for these statistics runs from April to March, these are the second set of 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.

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 four questions (questions relating to social care spending and employment will be in two follow-up blogposts).

Question 1: How many adults with learning disabilities were getting access to social care in 2021/22?

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 2021/22), and also the number of adults aged 18-64 in residential or nursing care.

This graph suggests that some trends evident from 2014/15 to 2018/19 (before the COVID-19 pandemic) for adults with learning disabilities aged 18-64 have continued through to 2021/2022, while other trends have changed pace or reversed. 

Residential care has continued to reduce year-on-year from 26,975 people in 2014/15 to 21,880 people in 2012, as has nursing care (1,265 people in 2014/15 through to 1,035 people in 2021/22). The number of people getting social care in the form of direct payments increased from 2014/15 (21,580 people) to 2020/21 (28,015 people), but has levelled off in 2021/22 (27,930 people). The number of people getting social care at least partly in the form of a direct payment increased from 2014/15 (13,265 people) to 2019/20 (17,255 people), but has decreased since (16,265 people in 2021/22). The most common form of long-term social care support was the council-managed personal budget (the extent to which many of these feel any different to council-commissioned community services is debatable), which continues to increase over time (from 49,150 people in 2014/15 to 61,530 people in 2021/22). Finally, while the number of people getting council-managed community support decreased substantially from 2014/15 (12,000 people) to 2020/21 (4,900 people), this number increased sharply in 2021/22 (8.090 people).

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 represented 17% of all adults with learning disabilities aged 18-64 getting long-term social care.

In total 132,465 adults with learning disabilities aged 18-64 were getting long-term social care at some point in 2021/22. 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 2021/22 there have been two years of decreases in these numbers - there were 2,965 fewer adults with learning disabilities aged 18-64 getting long-term social care at some point in 2021/22 than in 2019/20. 

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.

Unlike the figures for adults with learning disabilities aged 18-64, there is a continuous year-on-year upward trend in the numbers of adults with learning disabilities aged 65+ getting long-term social care, from 14,570 people in 2014/15 through to 18,405 people in 2021/22. 

The upward trend for the number of people in residential homes and nursing homes was interrupted in 2020/21 with a slight dip, but has resumed from 2020/21 to 2021/22, when 5,830 people were in residential homes and 860 people were in nursing homes. People getting long-term social care in the forms of direct payment only (620 people in 2014/15; 1,065 people in 2021/22), part direct payment (505 people in 2014/15; 785 people in 2021/22), and council-managed personal budgets (5,920 people in 2014/15; 9,350 people in 2021/22), with occasional fluctuations, have continued to trend upwards over time. The number of people getting council-commissioned community support has continued to decrease over time (1,430 people in 2014/15; 515 people in 2021/22).

For adults with learning disabilities aged 65+ getting long-term social care, 36% were getting this care in the form of residential or nursing care.

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 2021/22. In 2020/21 and 2021/22, there is a clear reversal in the upward trend, with both people getting long-term social care at some point in the year (132,465 people) and people getting long-term social care support at the end of the financial year (124,635 people) falling for two consecutive years.

 

The next graph below shows the same information for people aged 65+, with a different pattern to people aged 18-64. The number of people getting long-term social care support at some point in the year continues to increase into 2021/22. The number of people getting long-term care at the end of the 2020/21 financial year dropped from 2018/19 to 2020/21, but increased again from 2020/21 to 2021/22. 

While these statistics are difficult to interpret, there were 2,275 fewer adults with learning disabilities of all ages getting long-term social care at the end of March 2022 compared to the same time two years before.

There is also the question of whether the number of adults with learning disabilities getting long-term social care is increasing in line with projected increases in the number of adults with learning disabilities needing social care. The graph shows the total number of adults with learning disabilities aged 18+ getting long-term social care support at any time in the year and at the end of each year, using the same overall format as the graphs above. Added to the graph are projected numbers of adults with learning disabilities requiring social care support, taken from population projections published in 2012 and baselined for 2014/15. There are two projections using dashed lines - the dark blue dashed line is the number of adults with critical or substantial needs only, and the light blue dashed line is for the number of adults with critical, substantial or moderate needs. 

As the graph shows, up to 2018/19 the number of adults getting long-term social care was just about keeping pace with the projected numbers of adults with critical or substantial needs (which is drawing the eligibility hurdle really quite high), but by 2021/22 the gap between the number of people projected to need social care and those actually getting social care was around 10,000 people. The gap is even greater if you take the projected number of adults with learning disabilities with critical, substantial or moderate needs (a gap of around 19,000 people in 2021/22).

Question 2: Where are people with learning disabilities living?

The headline social care statistics only report the living situations of people living in residential care and nursing homes (social care support for people in other living situations is characterised by whether they’re getting council-commissioned support or some form of personal budget). The number of adults with learning disabilities in residential and nursing care from 2014/15 to 2021/22 is in the graph below, broken down by whether people are aged 18-64 or 65+. For people aged 18-64, the trend is for a substantial decrease in the number of people living in residential care – a reduction of 19% in 7 years, with a similar percentage drop (18%) for adults aged 18-64 in nursing care. For adults with learning disabilities aged 65+, the number of people in residential care and nursing care has been gradually increasing up to 2019/20 (although with dips in 2017/18 and 2020/21). 

More hidden in the social care statistics is more detailed information on where local authorities think that adults with learning disabilities aged 18-64 who are getting long-term social care are living (a holdover indicator introduced, along with employment, with Valuing People). The monster graph below stacks up all the different types of living situation, from 2014/15 to 2021/22 (again note the ominous decreases in 2020/21 and 2021/22). 

To hopefully make this a bit more digestible, I’ve picked out trends for the most common types of living situation in the graph below. As the graph shows, the most common (and increasing up to 2019/20) living situations for adults with learning disabilities aged 18-64 were not residential or nursing care. By far the most common living situation was people living with their families (47,835 people in 2021/22; 36% of people recorded in this database). Over 30,000 people were living in some form of supported accommodation in 2021/22 (31,960 people; 24%), over 20,000 people were tenants or owner-occupiers (20,035 people; 15%) and 3,375 people (3%) were living in a Shared Lives arrangement. Throughout the COVID-19 pandemic adults with learning disabilities in all these living situations (and that’s without thinking of the majority of adults with learning disabilities, who do not get any social care support) were not exactly at the front of the queue when it came to government guidance, support with PPE and the essentials of daily life, repurposing much-needed social care support, and support to ensure that support workers could minimise the COVID-19 risks to themselves and the people they were supporting. 

Question 3: 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 2021/22. 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, and a recent increase from 2020/21 to 2021/22 (although not to the levels of 2019/20).

In terms of what was happening in 2021/22, 1.030 adults with learning disabilities (almost all of whom were aged 18-64) came to social services as new clients.

Of these, 40% (415 people) were identified as having no needs and therefore requiring no services. For 14% (140 people) the response from social services was to signpost people to universal services or other forms of non-social care support. Almost one sixth of people (180 people; 17%) went on to get some form of low level or short-term support from social care, with a similar number (175 people; 17%) going on to get some form of long-term social care support. Very few (40 people; 4%) declined a service that was offered. 

Throughout the two years of the pandemic, the number of adults with learning disabilities coming to the attention of social care has been lower than in any of the previous three years, with a minority of this group getting any form of social care support during the COVID-19 pandemic beyond signposting elsewhere. 

Question 4: What do adults with learning disabilities think about the social care services they're getting?

At the same time as the publication of the 2021/22 social care statistics, information from the latest Personal Social Services Adult Social Care Survey for 2021/22 was also released by NHS Digital. This is administered by councils to thousands of adults making use of social care services every year, and asks (in carefully developed and tested standard and easy read formats) a range of questions about people's experiences of social care services and about people's wellbeing and health.

The graph below presents information from this survey from 2014/15 to 2021/22 for three groups of adults getting social care services; people with a primary care need of learning disabilities, people with a primary care need of physical support, and people with a primary mental health care need. The responses to four questions are summarised in the graph. For most groups, in response to the four questions at almost all time points there is little change over time (the exception being the percentage of people with learning disabilities saying they were not depressed or anxious, which increased by 16% in 2018/19 and has stayed at this higher level since), and overall people with learning disabilities report a consistently much more positive experience than the other two groups of people.

The general lack of change over this time period, when things have got harder for a lot of people getting social care and including the COVID-19 pandemic (although many groups were marginally more positive in 2020/21, at the height of lockdowns, than before or since), reinforces other research suggesting that these kinds of questions can be relatively insensitive to changes in people's circumstances.

The higher positivity of people with learning disabilities may be a genuine difference - it may also partly be a function of different question formats (people with learning disabilities are more likely to answer easy read format questions than other groups), and partly because people with learning disabilities were more likely to get help to answer questions, particularly from care workers, than the other two groups.

Summing up

To sum up, it seems like the continuing impact of the COVID-19 pandemic and the response of social care services to the pandemic has magnified some longer term trends in social care services, while putting other trends into reverse. The big, and grim, difference is that 2,275 fewer adults were getting long-term social care at the end of March 2022 compared to the end of March 2020, reversing a long-term trend of year-on-year increases. The gap between the number of adults with learning disabilities likely to need social care support and those getting social care support is now into the tens of thousands. This is particularly acute amongst adults aged 18-64 rather than adults aged 65+. Fewer requests for social care support are coming through to local authorities, and only a minority of these requests result in social care support.

There is also 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. This research project also reports changes to people's health and wellbeing over time that are not being picked up by the Adult Social Care Survey.