Vanishing Point

Preface

This blogpost is a bit unusual, and I'm nervous about it. It's the first draft of something I wrote for the Guardian's Academics Anonymous section last year. They decided in the end it was too gnomic for them to publish (they wanted specific experiences, which I was reluctant to provide). I came across it the other day while looking for something else and, after reading it, I thought I shouldn't be hiding behind anonymity, so here it is.

I think the only thing I'd add at this point is a practical suggestion that all publicly funded bodies should have to keep a public, accessible register of what projects they have commissioned, what the expected products are, and when they should be made public (with links to where the products can be found). If something changes from the original plan, the public body should add to the register reasons why things didn't work out as planned and what's going to happen next. It should be relatively straightforward to do and to update, and provide the same level of transparency that is already required of councils.

Anyway, here's the post...

Image: Wellcome Collection. Two men extracting air from an iron sphere

Academics Anonymous

Just how many are there? Commissions, projects agreed in a couple of vague emails at the end of the financial year, pieces of ‘consultancy’, ‘a little bit of an evaluation’? How much public money is being spent, often via those quangoids that seem to endlessly proliferate no matter how bad times get? [I have to say I have had occasionally similar experiences with big charities, where it’s the money of all those fund-raising marathon runners that is being spent]. And how many of these projects never see the light of day, doomed to exist as shades in an underworld where they will never be known?

I have a bit of a guilty secret. As an academic working in an area broadly defined as health, I’ve done this kind of work. Some of them appear on my CV, especially if something has come out of them. But some of them don’t. How many other academics are in a similar position to me? It’s hard to know. It’s not the kind of thing that we talk about much, unless it’s late at night at a conference bar with people you trust. It’s shame. Why shame? Well, depending on our academic position it can be time wasted for us, and academic integrity sometimes bartered away. But the hole of a project with nothing to show for it is much more important for the CV of the short-term researcher who worked on the project, often precariously jumping from project to project with no chance to build a CV or a consistent set of interests. And we may well have made promises – to people bravely speaking out about their experiences of a particular service, or professionals telling uncomfortable truths – “Your voice will be heard, not like the other times when you were ‘consulted’, this time it will be different”. How can you look these people in the eye, knowing that their contributions have been ignored or betrayed, again?

Why do I and others do this kind of stuff, when the potential for your work to be squished is plain and you might be putting your professional integrity on the line? In my case (and that of some others I’ve spoken to) it’s not pressure from the university – these projects are usually short-term and small beer financially, the overheads aren’t up to much, their potential for ‘impact’ or ‘engagement’ is marginal, there are no REFty publications to be had, and they can’t be counted as research income. [As an aside, I find it quite revealing that one criterion my university uses for deciding if income is consultancy or research is the potential for suppression on the part of the funder]. I don’t think it’s a misplaced quest for glory (this is rarely the high road to the high chair), although it might be a misplaced sense of getting close to where the action is, the fabled ‘influence’.

I think most of the time it’s a desire to be useful. When ResearchGate thinks you need a special email to tell you that ‘someone has read your work’, a gnawing sense of the futility of standard academic work is never far away, and this might just be your chance to make a difference. And you can get sucked into the delusion of necessity – if you don’t do it, who will, or won’t it happen at all?

And even though many quangoids and government departments present as walls of suits, they are never (well, rarely) monoliths of evil – even a Death Star may have its Finn, struggling to get out of his corporate Imperial Stormtrooper garb. Usually there are some brilliant people working in these places, taking the insider hit to try and achieve something meaningful within environments that may be supporting them or more commonly resisting them. Their work is often grinding and thankless, and I find myself wanting to do my bit to help and support them.

But even if you come to an agreement with one of these undercover Jedi, there’s no guarantee that your work won’t be buried. The person you’re working with may well move on (or be moved on). If you’re lucky people further up the hierarchy won’t be paying attention. People who reach, and enjoy, the upper reaches of quangoids or government departments often have a completely different sense of what is important. Reality and integrity can be pretty low in their list of priorities – what matters is preserving the amour propre of a minister (although the minister concerned is unlikely to know this is being done in their name), and not putting any reality dent into the gleaming, illusory policy vehicle these people think they’ve constructed. Senior enthusiasm (premature grandiose claims, press releases you have no control over, the urge to turn something local and useful into a national programme with a snappy acronym of its own, the descent of swarms of peripatetic project management types) can be just as harmful as senior hostility.

And there are all sorts of ways that hostile, or resistant, people in these organisations can sabotage one of these projects. The cultural form that this pressure takes may have changed over the years (from Yes Minister through The Thick Of It to W1A), but not the fact of the pressure itself.

For example, you can set up a double bind of setting very tight deadlines for a project, coupled with incessant reporting and micro-management such that no approvals and decisions are made in time for the project to be done. There are also myriad equivalents to the development hell that film makers describe – the contract is signed, but as the project progresses they just need some tweaks here, an adjustment there, and the money has run out before anything is done. Both of these are useful tactics for nudging a project away from what it was supposed to do into more comfortable channels of showing how marvellous the organisation is. Other common tactics are to sign a contract, but then demand either that you do it for half the money you said or that you do twice as much as agreed for the same amount of money.

And this is before you get to more straightforward attempts to suppress your work. At the most extreme, the organisation can and does exert the right it has placed in the contract for the work not to be published. Or talked about. Or even to acknowledge that the work exists (do academics read the small print of contracts? We’re like a garage band of 17 year-olds signing our first record deal). Or a report can be dribbled out obscurely and quietly, while the organisation insists that you say absolutely nothing about it.

This usually happens when the academic has offered some resistance to their work being invisibly rewritten by the organisation. This rewriting happens all the time, although in any product that emerges it’s only the academic’s name that is listed – “that’s written a bit negatively”, “I think it’s important to recognise the progress we’ve made”, “I wouldn’t say this service was poor, more that it has the opportunity to make a more exciting journey to outstandingitude”. Is that when the line of academic integrity is definitively crossed, or is it when you start to unthinkingly apply self-censorship and you write in this stuff within the organisation having to make you do it?

The frustrating irony is that almost all this stuff is pretty boring and uncontroversial according to how most people would understand the term. It’s surely good to have this stuff in the public domain, because that will help debates that lead to better decisions being made. It’s hardly Watergate, and trying to suppress something gives it a significance that it might not have otherwise. These organisations are funded by us, and supposedly exist for the public good. Why can’t we see what is being spent in our name, and how much is being wasted?

Paid employment and people with learning disabilities in England: what do the statistics tell us?

This blogpost updates previous posts on what the statistics say about the self/paid employment of working age (aged 18-64 years old) adults with learning disabilities in England. These figures are provided by local authorities every year, and since 2014/15 have only been provided for people getting long-term social care (before 2014/15 it was the larger group of people known to local authorities as a person with learning disabilities, even if they weren't getting long-term social care support). This means that these figures don't include the much, much larger group of adults with learning disabilities who aren't known to local authorities or GPs and who don't get any kind of support related to their learning disability.

Some of the numbers reported here are included in the NHS Digital Adult Social Care Outcomes Framework (indicator 1E, if you're interested), although some of the numbers are more buried in publicly available but less accessible datafiles. 

What do the numbers tell us?

The first graph below shows the number of working age adults with learning disabilities that councils say are in any self/paid employment, broken down by whether people are in employment for 16+ hours per week or less than 16 hours per week (and 1 hour a week can count in these statistics). The gap between 2013/14 and 2014/15 is because of the change in data collection I mentioned earlier, so numbers before and after then can't be compared, and 2008/2009 was the first year that information was collected so it's rather dodgy for that year.

According to these figures, in 2017/18 there were 7,907 working age adults with learning disabilities getting long-term social care in any form of self/paid employment. Overall, this looks like it might be a slight increase from around 7,400-7,500 people in the previous three years. Consistent across the years is that most of the people in employment (68% of people in 2017/18) are working for less than 16 hours per week.

What do these numbers mean in terms of employment rates? The graph below shows the employment rates for working age adults with learning disabilities over the same  time period. The columns show the overall employment rate - in 2017/18 this was 6.0%, compared to around 75% for adults generally. From 2014/15 to 2017/18 the overall employment rate for working age adults with learning disabilities has stayed pretty static at or just under 6%.

The lines on the graph show employment rates for men and women with learning disabilities separately. Employment rates for men (the purple line) are consistently higher (6.6% in 2017/18) than employment rates for women (the blue line) (5.2% in 2017/18), with some tentative signs that this gender employment gap is increasing.

Employment rates are also very different across regions, as you can see in the next graph below which shows employment rates for different regions from 2014/15 to 2017/18. The highest employment rates for working age adults with learning disabilities reported by councils were in the London (7.5%), Eastern (7.5%) and Yorkshire & Humber (7.4%) regions. The lowest employment rates were in the North West, East Midlands and West Midlands (all 4.3%).

At an individual council level these differences in employment rates are even bigger, ranging from virtually 0% to over 20%, as the graph below shows.

The last graph below sounds an appropriate note of caution about the reliability of information on self-paid employment provided by councils. This shows, for all working age adult with learning disabilities getting long-term social care, whether councils say they are: 1) in self-paid employment; 2) not in employment but actively seeking work (and presumably therefore liable to potential benefit sanctions); 3) not in employment but not actively seeking work. There is also a fourth category, where councils say they don't know the employment status of the person.

Over time, the number of people whose employment status is unknown has decreased rapidly, from 44% of working age adults with learning disabilities in 2014/15 to 28% of people in 2017/18 (28% is still a big chunk, however). This might also account for some of the apparent increase in the number of people employed in 2017/18, which might partly be because councils simply know about more people. It is unclear how councils are making decisions about whether to record someone as actively seeking work or not.

Overall, this update shows little apparent change in the self/paid employment of working age adults with learning disabilities getting long-term social care, with most work being extremely part-time, a gender employment gap and big differences in employment rates across areas. 

New statistics on restraint, seclusion and segregation - what do they tell us?

The ‘restrictive interventions’ (or more bluntly restraint, seclusion and segregation) being used by inpatient services on people with learning disabilities or autistic people has been gaining some public and political attention, thanks to the doughty work of many campaigners and journalists. The Secretary of State for Health (and Care – remember what that is?) has commissioned the Care Quality Commission to “review the use of restraint, prolonged seclusion and segregation for people with mental health, a learning disability and/or autism”.

Before today (17 January 2019) there have been no publicly available statistics on what inpatient units are doing to people with learning disabilities or autistic people in inpatient units in terms of ‘restrictive interventions’ since information collected from the last Learning Disability Inpatient Census in September 2015 (see this blogpost for details). Recently, both radio (File On 4) and TV (Sky News) gained and made public data from NHS Digital that it was already routinely collecting on these ‘restrictive interventions’ (see this blogpost for more details of the data obtained by File On 4). 

Today, as part of its monthly digest of statistics concerning people with learning disabilities and autistic people in inpatient units, NHS Digital included for the first time additional tables about the ‘restrictive interventions’ experienced by people with learning disabilities and autistic people in these places. This blogpost takes a first quick look at some of the information from these tables (taken from the LDA Monthly Statistics from MHSDS – October 2018: Reference Tables). There is undoubtedly lots more in these tables that I’ve missed, and also it’s more than possible that I’ve made some errors of interpretation/basic maths, so please do say if I’ve got something wrong and I’ll correct it.

So, where do these statistics come from? They come from the Mental Health Services Dataset (or MHSDS), which is collected from mental health service providers (both NHS and independent sector) about everyone using their inpatient mental health services. For a while now, information has been flagged about people with learning disabilities and/or autistic people in these services and reported monthly alongside Assuring Transformation data (a dataset collected by service commissioners that NHS England tend to report when discussing the trajectory of Transforming Care). The coverage of people and services in the Assuring Transformation dataset and the MHSDS overlaps but is not the same:

• the MHSDS does not include everyone in the Assuring Transformation dataset because some big ‘specialist’ inpatient services don’t report to the MHSDS (for reasons that escape me https://chrishatton.blogspot.com/2018/03/now-you-see-me-now-you-dont-independent.html )
• the MHSDS includes a lot of people with learning disabilities and/or autistic people who are in generic mental health inpatient units (rather than specialist learning disability units), often for short periods of time. For example, the MHSDS reports that at the end of September 2018 there were 3,625 people with learning disabilities or autistic people in some form of inpatient unit/ward. During the month of October, 445 people were admitted and were still an inpatient by the end of October, 500 people there at the beginning of the month were discharged at some point in the month, and 900 people were both admitted and discharged within the month of October. So by the end of October, there were 3,575 people in some form of inpatient unit/ward.

Among the many, many things collected in the MHSDS, information is collected from service providers on every instance of ‘restrictive intervention’, broken down into:

·        Physical Restraint (prone);

·        Physical Restraint (excluding prone);

·        Chemical Restraint;

·        Mechanical Restraint;

·        Seclusion;

·        Segregation;

·        a category where a restrictive intervention has been recorded but the specific type of intervention has not been recorded.

Helpfully, NHS Digital report this information in two ways; by the number of people who have been subject to a restrictive intervention at least once in the month of October 2018; and by the number of restrictive interventions that have been used in the month of October (because people can be subject to multiple instances of restrictive interventions).

I’m going to start by going through the statistics on the number of people with learning disabilities or autistic people who have been subject to at least one restrictive intervention through the month of October 2018. In total 435 people were recorded as being subjected to restrictive intervention at some point in the month of October. In terms of specific types of restrictive interventions (these numbers will add up to more than 435 as the same people could have experienced more than one type of restrictive intervention):

·        100 people were subject to prone physical restraint

·        275 people were subject to another form of physical restraint

·        65 people were subject to chemical restraint

·        20 people were subject to mechanical restraint

·        80 people were subject to seclusion

·        5 people were subject to segregation

·        170 people were subject to a restrictive intervention where the form of that intervention was not recorded

I think, taking into account people going into and leaving inpatient units throughout the month, that in total 4,970 people with learning disabilities or autistic people were in some form of inpatient unit at some point in October (3,125 who were there at the start of October and stayed, plus 445 people who were admitted during the month of October and stayed, plus 500 people who were there at the start of October and were discharged during the month, plus 900 people who went in and out during October – I feel I need to show my working so you can tell me if/where I’ve made a mistake).

[As an aside, this number of people is a lot bigger than Assuring Transformation (and doesn’t even include some people in the Assuring Transformation dataset), and personally I think should be an important part of any programme designed  to improve support for people with learning disabilities or autistic people in distress. As well as people who are stuck in terrible conditions for years, there are a lot of people in and out of generic mental health inpatient units and we understand very little about how/if that’s working for people].

So, overall I think 8.8% (435 out of 4,970 people) of people with learning disabilities or autistic people spending some time in an inpatient unit/ward in October 2018 were recorded as subject to some form of restrictive intervention. This information is also broken down by age group, so I have tried the same calculations for each age group listed, showing the percentage of people in each age group who were subject to at least one restrictive intervention:

·        13.7% of people aged under 18 (65 out of 475 people in inpatient units/wards)

·        11.2% of people aged 18-24 (105 out of 940 people)

·        8.5% of people aged 25-34 (115 out of 1,350 people)

·        6.9% of people aged 35-44 (60 out of 870 people)

·        5.3% of people aged 45-54 (35 out of 660 people)

·        6.4% of people aged 55-64 (25 out of 390 people)

·        8.8% of people aged 65+ (25 out of 285 people)

As I mentioned earlier, NHS Digital also report the number of restrictive interventions used on people with learning disabilities or autistic people during October 2018. In total 2,700 instances of restrictive intervention were recorded over the month, broken down according to the following types of restrictive intervention:

·        285 instances of prone physical restraint

·        1,485 instances of another form of physical restraint

·        225 instances of chemical restraint

·        65 instances of mechanical restraint

·        190 instances seclusion

·        5 instances segregation

·        In 445 instances of restrictive intervention (16.5% of all recorded instances), the form of that intervention was not recorded

On average, among those people in inpatient units/wards subject to restrictive intervention, people experienced 6.2 instances of restrictive intervention per person during October 2018 (2,700 restrictive interventions among 435 people). By age group:

·        People under 18 experiencing restrictive intervention were subject to an average 11.7 instances of restrictive intervention per person (765 restrictive interventions among 65 people)

·        People aged 18-24 experiencing restrictive intervention were subject to an average 5.5 instances of restrictive intervention per person (580 restrictive interventions among 105 people)

·        People aged 25-34 experiencing restrictive intervention were subject to an average 5.9 instances of restrictive intervention per person (675 restrictive interventions among 115 people)

·        People aged 35-44 experiencing restrictive intervention were subject to an average 5.7 instances of restrictive intervention per person (340 restrictive interventions among 60 people)

·        People aged 45-54 experiencing restrictive intervention were subject to an average 4.3 instances of restrictive intervention per person (150 restrictive interventions among 35 people)

·        People aged 55-64 experiencing restrictive intervention were subject to an average 4.0 instances of restrictive intervention per person (100 restrictive interventions among 25 people)

·        People aged 65 or older experiencing restrictive intervention were subject to an average 3.6 instances of restrictive intervention per person (90 restrictive interventions among 25 people)

NHS Digital also provide statistics according to individual provider organisations, categorised according to whether they are NHS or independent sector. For obvious reasons I thought this would be worth looking at in more detail. But when I started looking, it became clear to me that a lot of provider organisations are simply not reporting data on restrictive interventions properly, and that this lack of proper reporting is likely to be more common in the independent sector.

For example, there are 14 independent sector providers listed in the MHSDS for October 2018 (although as we know from Ian Birrell and others, many of these different ‘brands’ are ultimately owned by a small set of mainly U.S. companies/hedge funds). Only two of them (Cygnet and St Andrews) record 5 or more instances of restrictive intervention (of any type) happening in the month of October 2018 (below 5 and the numbers are suppressed by NHS Digital to prevent individuals being potentially identifiable). So the following organisations (I’ve just listed the ones with more than 5 people in them at the end of October 2018) are publicly reporting that, in effect, no restrictive interventions were visited on any people with learning disabilities or autistic people in their inpatient units – and there were 1,345 people in independent sector inpatient units at the end of October 2018:

·        CAS Behavioural Health Ltd (160 people at the end of October)

·        Elysium Healthcare (355 people)

·        Jeesal Akman Care Corporation Ltd (50 people)

·        LiveWell SouthWest (25 people)

·        Partnerships in Care Ltd (220 people)

·        Priority Group Ltd (10 people)

·        The Huntercombe Group (80 people)

Even where an organisation is reporting that restrictive interventions are happening, in some organisations the type of restrictive intervention is very commonly not reported. For example, St Andrews reported their staff doing 810 instances of restrictive interventions in October 2018 – but in over half of these (420 instances, 52%) the type of restrictive intervention was not recorded. Looking down the longer list of NHS Trusts in this MHSDS dataset, I could only find one where this was an issue (South London and Maudsley NHS Foundation Trust, where the type of restrictive intervention was not recorded for all 25 instances of restrictive intervention).

It’s great to see this information being made public by NHS Digital, and over time a more complete picture will build up about the restrictive interventions being applied to people with learning disabilities and autistic people in inpatient units. From this first month of information, I think there are a few things we can say already:

·       A lot of people are subject to restrictive interventions, of multiple types, on multiple occasions, in a short space of time. In the month of October 2018, 8.8% of people with learning disabilities and autistic people in inpatient units/wards experienced some form of restrictive intervention (435 out of 4,970 people). If people were subject to restrictive intervention, on average they were subject to 6.7 instances of restrictive intervention during the month (2,700 restrictive interventions among 435 people).

·       Physical restraint, including prone restraint, is commonly used. The most commonly reported types of restrictive intervention were physical restraint other than prone restraint (1,485 instances of restrictive intervention), prone restraint (285 instances), chemical restraint (225 instances) and seclusion (190 instances). For 16.5% of restrictive interventions (445 instances) the type of restrictive intervention was not recorded, although almost all of these are accounted for by one organisation, St Andrews (where the type of restrictive intervention was not recorded for 420 instances of restrictive intervention in October).

·       Young people aged under 18 are the age group most likely to be subject to restrictive interventions (13.7% of young people in inpatient units/wards) and, if they do, to experience twice as many instances of restrictive intervention (11.7 instances of restrictive interventions per person in October 2018) as other age groups.

·       It seems that some organisations, particularly those in the independent sector, are not properly recording or reporting information on restrictive interventions, or are simply not reporting this information at all.

Where are we at with social care for adults with learning disabilities?

This year I’ve going to try and write slightly more blogposts than last year (don’t say you weren’t warned), with a focus on information rather than opinion where possible. So, on the day when the NHS Long Term Plan is published, it makes perfect sense to start with a blogpost on… social care. This post will look at trends in the data produced by NHS Digital on social care statistics related to adults with learning disabilities. There will be graphs.

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 important is collected only on people getting ‘long-term’ social care. Most of the information for 2017/18 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 2017/18 (bearing in mind the change in data collection between 2013/14 and 2014/15). 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.

The second graph below presents the same information for adults with learning disabilities aged 65+, from 2014/15 (when the information first became available). Again, council-managed personal budgets are the most common form of community-based support for older adults.

The next graph below (using the same axis for ease of comparison) shows the number of adults with learning disabilities aged 18-64 in residential care and nursing care. The graph shows that although the number of adults aged 18-64 in residential care and nursing care have been gradually declining over time, they still represent 20% of all adults with learning disabilities aged 18-64 getting long-term social care.

The same information for adults with learning disabilities aged 65+ is in the next graph. The number of older adults with learning disabilities in residential care and nursing care has if anything slightly increased over time, with over 40% of older adults with learning disabilities getting long-term social care in residential or nursing care.

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+. In 2017/18 the average fee of residential care for adults with learning disabilities aged 18-64 was £1,476 per week, compared to the next most expensive £1,159 for adults aged 18-64 needing sensory support. Nursing care for adults with learning disabilities aged 18-64 was charged at an average £1,246 per week, compared to the next most expensive £862.38 per week for people needing physical support. Residential care for adults with learning disabilities aged 65+ was an average £961 per week, compared to the next most expensive £567 per week for older people needing physical support. Finally, nursing care for adults with learning disabilities was an average £833 per week, compared to the next most expensive £660 per week for older people needing mental health support.

So far this is pretty broad-brush information, but from 2009/10 councils have also provided more detailed information 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 2017/18 this applied to 48,165 people, 36.7% of all working age adults with learning disabilities getting long-term social care. And the number of people councils are reporting as living with families is rising rapidly. Also rising rapidly are the number of working age adults with learning disabilities in supported accommodation of some kind, with tenancies previously rising but now stalled and residential acre gradually decreasing. Worrying is the 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. And these figures don’t include most adults with learning disabilities in inpatient services - councils only recorded 415 people in these places in 2017/18, with their reported numbers (along with their apparent sense of responsibility) dropping rapidly over time.

One final thing I’d like to mention about the number of adults with learning disabilities getting social care support is that, as far as we can tell, the numbers are continuing to slowly increase, with councils seemingly trying to protect services for adults with learning disabilities as much as they can. However, the small 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. 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 2018 there would be 166,114 adults with learning disabilities needing social care support, compared to the 147,920 adults actually getting long-term social care support in 2017/18.

One final graph – on the money that councils spend on social care for adults with learning disabilities from 2014/15 to 2017/18. 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 continues to increase slightly in absolute terms, from £4.98 billion in 2014/15 to £5.54 billion in 2017/18, although an annual inflation rate of 3% would pretty much wipe this increase out. Second, almost the entire social care budget (98.5%) is spent on long-term support rather than short-term support. Finally, despite apparent reductions in their use, social care spending on residential and nursing care for adults with learning disabilities still represents 37% of all social care expenditure on adults with learning disabilities.

I hope this blogpost provides some useful information. I think it shows that councils are trying to protect social care funding for adults with learning disabilities relative to the huge cuts in income they have experienced. However, this isn’t nearly keeping pace with the number of people needing social care support, and there are worrying signs that there are likely to be large numbers of adults with learning disabilities either getting no support at all, or getting support that isn’t right for them, with immediate and longer-term consequences for them and their families.