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!