The Department of Health and Social Care have recently released their annual tranche of statistics concerning social care for adults in England (these were previously published by NHS Digital, then NHS England until this year). 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 2024/25 figures. While the underlying information used seems to be the same, there have been changes this year to how the information is extracted (from individual records of people drawing on social care) and how the information is reported. This has led to improvements in some aspects of the information made public about adults with learning disabilities (particularly in information about people aged 65+), but less specific information sometimes being reported on specific kinds of social care services people are using.
I have written a blogpost on the 2024/25 employment figures contained in the social care statistics, and I will be writing one on the 2024/25 information about social care finances. This blogpost is about what the statistics say about how many adults with learning disabilities were drawing on social care in 2024/25.
Question 1: How many adults with learning disabilities were getting access to social care in 2024/25?
From 2014/15 to 2023/24 the types of long-term social care support people get were 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 way this is reported has changed a bit in 2024/25, with in effect the two categories of direct payment (direct payment only and support via personal budget partly including a direct payment) being lumped together. Importantly, a category of ‘unknown’ has been added, where a local authority does not appear to know what form of long-term social care support a person with learning disabilities is getting.
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 2024/25, the number of adults aged 18-64 in residential or nursing care, and the number of adults aged 18-64 getting an unknown form of long-term social care (this is new for 2024/25, and represented by an orange square in the graph).
This graph suggests that some trends have been consistent from 2014/15 to 2024/25 for adults with learning disabilities aged 18-64, while other trends have been less consistent over time.
The number of people in residential care has continued to reduce year-on-year from 26,975 people in 2014/15 to 20,070 people in 2024/25. The number of people in nursing care gradually dropped from 2014/15 (1,265 people) to 2023/24 (1,000 people), but increased in 2024/25 (1,075 people). Overall, although the number of adults aged 18-64 in residential care and nursing care continues to gradually decline over time, in 2024/25 they still represented 15% of all adults with learning disabilities aged 18-64 getting long-term social care.
The number of people getting social care in the form of direct payments (at least in part) increased from 2014/15 (34,845 people) to 2019/20 (44,875 people), dipped for two years coinciding with the height of the Covid-19 pandemic (to 44,195 people in 2021/22), and has since resumed its rise to 46,130 people in 2024/25.
The most common form of long-term social care support recorded is the council-managed personal budget (the extent to which many of these feel any different to council-commissioned community services is debatable), which continued to increase fairly steadily over time (from 49,150 people in 2014/15 to 62,350 people in 2023/24). An apparent sharp drop to 56,060 people in 2024/25 matches almost exactly the number of people (5,955 people) newly classified in 2024/25 as getting an ‘unknown’ form of long-term social care. It is unclear to me why local authorities don’t know what long-term social care they are commissioning, and also why it seems that they were previously counting them as council-managed personal budgets.
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), there have been big fluctuations since (currently recorded as 7,910 people in 2024/25).
In total 137,200 adults with learning disabilities aged 18-64 were getting long-term social care at some point in 2024/25. While there have been steady trends of increasing numbers of adults with learning disabilities getting long-term social care from 2014/15 to 2019/20 and from 2021/22 to 2024/25, from 2019/20 to 2021/22 during the height of the Covid-19 pandemic there were two years of decreases in these numbers.
The second graph below presents the same information for adults with learning disabilities aged 65+. 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.
The number of people aged 65+ in residential homes (5,425 people in 2014/15) increased substantially up to 2018/19 (5,850 people), and with some minor fluctuations has remained at a similar level up to 2024/25 (5,875 people). With the exception of two years of decreasing numbers of people aged 65+ in nursing homes from 2018/19 to 2020/21, the number of people has increased year-on year from 670 people in 2014/15 to 920 people in 2024/25. For adults with learning disabilities aged 65+ getting long-term social care, 35% were getting this care in the form of residential or nursing care.
People aged 65+ getting long-term social care in direct payments at least in part increased year-on-year from 2014/15 (1,125 people) to 2021/22 (1,850 people) and has fluctuated since then (currently 1,690 people in 2024/25).
As with adults aged 18-64, the most common form of long-term social care support recorded for adults with learning disabilities aged 65+ is the council-managed personal budget, which continued to increase fairly steadily over time (from 5,920 people in 2014/15 to 9,855 people in 2023/24). Again, an apparent sharp drop to 8,915 people in 2024/25 matches almost exactly the number of people (830 people) newly classified in 2024/25 as getting an ‘unknown’ form of long-term social care.
Finally, the number of people getting council-commissioned community support has decreased steadily over time from 2014/15 (1,430 people) to 2023/24 (685 people), although there was a sharp increase in 2024/25 (1,220 people).
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 19,455 people in 2024/25.
However, the statistics I’ve presented so far are for people getting long-term social care at some point in each year. The 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+ (combining the figures for people aged 18-64 and people aged 65+), from 2014/15 to 2024/25. In 2020/21 and 2021/22, there is a clear reversal in the upward trend, before this resumes up to 2024/25.
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 also includes 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 2019/2020 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 2024/25 the gap between the number of people projected to need social care and those actually getting social care was around 13,700 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 26,600 people in 2024/25).
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, which I’ve covered above. Up until 2023/24, more detailed information was hidden away on where local authorities think adults with learning disabilities aged 18-64 getting long-term social care were living (see this past blogpost for an analysis of this information). In 2024/25, the way this information has been made available has changed quite a lot. The good news is that this information is now available for adults with learning disabilities aged 65+ as well as people aged 18-64. The bad news is that they have collapsed the detail of where people are living into four categories that to my mind feel pretty meaningless:
- Living at home or with family - supported (includes people living in approved premises for offenders, shared lives, sheltered housing, supported accommodation)
- Living at home or with family – unsupported (includes mobile accommodation, owner occupier, settled mainstream housing with family or friends, tenant, tenant with a private landlord)
- Not living at home – supported (night shelter, temporary accommodation, other temporary accommodation, refuge, rough sleeper, staying with family or friends in the short term)
- Not living at home – unsupported (prison, care home, nursing home, healthcare)
For what it’s worth, the graph below shows the information using these collapsed categories for people with learning disabilities aged 18-64 from 2014/15 to 2024/25. How this is more useful in understanding what kinds of places people are living in, and how things are changing over time, is beyond me.
For people with learning disabilities aged 65+ (for whom we only have information for 2024/25), the equivalent figures are:
- Living at home or with family – supported. 8,000 people
- Living at home or with family – unsupported. 4,650 people
- Not living at home – supported. 6,180 people
- Not living at home – unsupported. 85 people
- Living situation unknown. 545 people
Question 3: What do adults with learning disabilities think about the social care services they're getting?
At the same time as the publication of the 2024/25 social care statistics, information from the latest Personal Social Services Adult Social Care Survey for 2024/25 was also released by the Department of Health and Social Care. 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 responses to four questions in this survey from 2014/15 to 2024/25 for adults with a primary care need of learning disabilities.
Overall, over 40% of people with learning disabilities report that their quality of life is at least very good, with this staying fairly stable over time except for a dip in 2020/21 (during the height of the Covid-19 pandemic) and levels returning to where they were before the pandemic by 2023/24. Around 75% of people with learning disabilities report that they are at least very satisfied with the services they get (the red line), with a temporary rise in 2020/21 (again potentially pandemic-related) and a return to pre-pandemic levels and possible a very gradual further decrease over time to 2024/25 (the 74.5% of people with learning disabilities reporting this in 2024/25 is the first time this figure has gone below 75% from the start of the current survey in 2014/15).
For self-rated general health (the green line), just over 70% of people with learning disabilities reported themselves to be in at least good health from 2014/15 to 2021/22 (through the height of the Covid-19 pandemic). However, since then the percentage of people reporting themselves to be in at least good health has started gradually dropping, standing at 67.8% of people in 2024/25.
Finally, from 2014/15 to 2017/18 just under half of people with learning disabilities rated themselves as not anxious or depressed. In 2018/19, there was an unexplained large jump in this figure for people with learning disabilities (though not for other groups of adults using social care) to just around 63% of people, where it was stayed ever since except for a dip in 2020/21.
Although I haven’t reported the figures in detail in this blogpost, it’s worth mentioning that in this survey people with learning disabilities generally report a consistently much more positive experience than adults using social care with physical support needs or mental health support needs. 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.
It’s also worth mentioning that the general lack of change in these ratings over a decade when things have got harder for a lot of people getting social care and including the COVID-19 pandemic, reinforces other research suggesting that these kinds of questions can be relatively insensitive to changes in people's circumstances.
Question 4: Are adults with learning disabilities equally likely to get long-term social care support wherever they live in England?
We regularly hear about the postcode lottery when it comes to all sorts of education, health and social care services across England. We also regularly hear about how there are real inequities in health and life expectancy depending on the relative affluence of the areas people live in. [we don’t appear to hear about these things regularly enough to do anything meaningful about it]
The two graphs below are a really simple way to get a handle on this, one graph for people with learning disabilities aged 18-64 and one for people aged 65+. Each tiny vertical bar is the number of people with learning disabilities in a particular council getting long-term social care per 100,000 people in the total population (to adjust for different councils having different numbers of people), then they’re just arranged from lowest to highest.
The graphs can have some extremes at each end because some councils (such as the City of London or the Isles of Scilly) are very unusual compared to most councils. Even taking this into account, both graphs show that you are much more or less likely to get some form of long-term social care support depending on where you live.
For adults with learning disabilities aged 18-64, there is wide variation in how likely you are to get long-term social care. Even knocking off the 5 most extreme councils at each end, you are more than twice as likely to get long-term social care in St Helens (587 people per 100,000) than you are in Ealing (263 people per 100,000). Of the bottom 10 councils, 9 of them are in London. Of the top 10 councils, 8 of them are in the north of England (spread across Merseyside, the North West and the North East).
It's also the case that there are many fewer adults with learning disabilities aged 18-64 getting social care than are registered with their GP as a person with learning disabilities. The mid-ranking councils in this graph are providing social care to 383 adults with learning disabilities per 100,000 people overall. Information from GP practices (from the Quality and Outcomes Framework) says that 590 people of all ages per 100,000 people overall are registered as a person with learning disabilities, and other information from GPs backs this up with more specific information for people with learning disabilities aged 18-64.
For adults with learning disabilities aged 65+, there is also wide variation in how likely you are to get long-term social care, although it is worth mentioning that the proportion of older adults with learning disabilities getting long-term social care is overall much lower than for adults aged 18-64. Some of this might be due to the brutal fact that people with learning disabilities don’t currently live as long as other groups of people (another inequity that we regularly hear about with little seeming impact on the fundamental action required). It might also be partly because some older adults with learning disabilities end up being identified as having a different ‘primary care need’ as they age and so are not visible in these statistics as people with learning disabilities.
Even knocking off the 5 most extreme councils at each end, you are more than three times as likely to get long-term social care in Liverpool (359 people per 100,000) than you are in Hampshire (112 people per 100,000). Of the bottom 10 councils, 8 of them are substantially rural counties (possibly where more affluent people tend to retire to, thus increasing the general age profile of the population). Of the top 10 councils, 7 of them are cities in the Midlands and North of England and 3 of them are in London, where the general age profile of populations may skew younger.
It's also the case that there are many fewer adults with learning disabilities aged 65+ getting social care than are registered with their GP as a person with learning disabilities. The mid-ranking councils in this graph are providing social care to 186 adults with learning disabilities per 100,000 people overall. Information from GP practices (from the Quality and Outcomes Framework) says that 590 people of all ages per 100,000 people overall are registered as a person with learning disabilities, and other information from GPs backs this up with more specific information for people with learning disabilities aged 65+.
Summing up
While the number of adults with learning disabilities getting long-term social care in England has started to increase again after drops in numbers during the height of the Covid-19 pandemic, the gap between how many people are likely to need services and how many people are actually getting services continues to widen. Many fewer adults with learning disabilities are getting long-term social care than are registered with their GP as a person with learning disabilities.
For adults with learning disabilities aged 18-64, pre-Covid trends in how people are getting their services seem to be continuing, with at least some use of direct payments and council-managed personal budgets continuing to increase, and residential care continuing to decrease, although there are recent upticks in the number of people in nursing care and getting services directly commissioned by the council. Worryingly, it seems that for a lot of people the council commissioning their social care doesn’t know how they are getting this social care.
For adults with learning disabilities aged 65+, there are some signs that longer-term trends are starting to be reversed. Council-commissioned personal budgets continue to increase, although direct payments may be starting to decrease and services directly commissioned by the council may be starting to increase. The number of people in residential care and in nursing has generally flatlined in the past decade, although there are signs that the number of people in nursing care is increasing. As with adults with learning disabilities aged 18-64, for adults aged 65+ it seems that for a lot of people the council commissioning their social care doesn’t know how they are getting this social care.
In a large survey collected by councils, Covid-era changes in how adults with learning disabilities reported their quality of life, satisfaction with services, anxiety/depression and general health have overall been quite temporary. Although these questions are quite insensitive to change, there are some signs that people are reporting their general health to be gradually getting worse since the Covid-19 pandemic.
As has always been the case, there are big variations across councils in how likely adults with learning disabilities are to be getting long-term social care. There are a lot of complicated reasons for this, but it is not right that depending on where you live you can be two or three times more likely to get long-term social care than if you lived in a different council area.
The way the information is reported has changed, with some new information for people with learning disabilities aged 65+ but a lot less detail on what kinds of places people are living in, to the point that (at least to my eyes) some of this information is pretty meaningless.
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