Monday, 12 January 2015

It's complicated: What's happening in social care for adults with learning disabilities in England?

I believe amongst the young people (well, young compared to me) that there’s a contraption called Facebook where you can declare to the world, if you’re so minded, your ‘relationship status’. One of the options from the drop-down menu (wouldn’t a free text box be much more fun?) is “It’s complicated”, defined in the Urban Dictionary (http://www.urbandictionary.com/define.php?term=It%27s+complicated) as: Refers to a couple in an ambiguous state between "friends" and "in a relationship". May also be used to indicate dissatisfaction with an existing relationship.” [As an aside, I wonder how many people getting social care support would describe their relationship with social services in these terms?]



Partly as a response to regular apocalyptic press releases from a range of organisations declaring the extent of current social care to be an abandoned municipal yurt in the car park of an out of town superstore (I may exaggerate slightly, but then so do many of the press releases), I thought in this blogpost I’d take a look at what the national statistics say about the provision of social care for adults with learning disabilities in England over the last 5-10 years or so. It's also to add some graphs to Rob Greig's recent blog "There's more to the learning disability agenda than Winterbourne View" (www.ndti.org.uk/blog/theres-more-to-learning-disabilities-than-winterbourne-view). More detail on these statistics (and much more besides) up to 2012/13 is available in the Improving Health and Lives publication ‘People with Learning Disabilities in England 2013’ (www.improvinghealthandlives.org.uk/publications/1241/People_with_Learning_Disabilities_in_England_2013 ) - I’ve added some more up-to-date figures for 2013/14 where they are available from the excellent Health and Social Information Centre web resource ‘National Adult Social Care Intelligence Service’ (https://nascis.hscic.gov.uk/).

Lack of shock horror spoiler alert - the conclusion I’m going to come to is “it’s complicated”.

How many adults with learning disabilities are identified by local authorities?

Before discussing trends in social care service provision and expenditure for adults with learning disabilities, it’s important to get a sense of the population of adults with learning disabilities and how it’s changing over time.

Getting good information on this is surprisingly difficult. Local authority returns from 2009/10 report the total number of adults with learning disabilities aged 18-64 who are known to local authorities: this figure is increasing steadily over time, from 136,350 people in 2009/10 to 141,980 people in 2013/14. However, we don’t know about people with learning disabilities aged 65 or over. We also don’t know how many adults with learning disabilities aren’t known to local authorities.

The figures here are lower than the number of adults flagged as having a learning disability on GP registers (214,352 people in 2013/14), and population estimates suggest that the local authority numbers are likely to miss out the large number of adults who were identified as having moderate learning difficulties in school.

Even with tightening eligibility criteria, the welcome news that more people with greater needs are living longer means that the number of adults known to local authorities is still going up.

Where are adults with learning disabilities living?

Both in terms of numbers of people and social care expenditure, residential services for adults with learning disabilities loom large. The graph below shows the number of adults with learning disabilities aged 18+ in local authority funded residential care, nursing care and adult placements (roughly equivalent to shared lives type support: UPDATE Alex Fox has informed me that adult placements are an old term for Shared Lives and this indicator is restricted to Live-In Shared Lives).

There is also a light blue bar at the top of the stacks up to 2010/11 – this is our estimate of the number of people in these types of service who were funded by the NHS up to 2010/11 but were transferred (with a wodge of cash) to local authority responsibility in 2011/12. Remembering this substantial transfer of people and cash is crucial when interpreting recent trends in services and spending for adults with learning disabilities – without factoring it in, as we’ll see, it looks like there’s a bump in the number of people getting services and in local authority spending in 2011/12 when this is simply the effect of people, services and money shifting from the NHS to local authorities.

This graph shows that, taking this into account, the number of adults with learning disabilities being in any of these forms of residential support has steadily reduced from 2006/07 to 2013/14, with the pace of reductions possibly speeding up over the past couple of years. The number of people in adult placements is gradually rising but the numbers in all other forms of residential/nursing care are declining, against a trend of increasing numbers of adults with learning disabilities known to local authorities.

Because we can’t divide up the number of NHS/LA transferred people by age band we can’t include them in the following graphs, but this trend is even more marked for adults aged 18-64 (see the graph below).


The graph below for people aged 65+ shows a flatter trend up to 2010/11, with a bigger ‘bump’ in 2011/12 (suggesting that many of the NHS/LA transfers involved older people) and a recent reduction.


Of course, this is by no means the whole picture in terms of where people are living – more than two thirds of adults with learning disabilities known to local authorities are not living in these types of residential settings. In addition many of the 3,000 or so adults with learning disabilities in 'specialist' inpatient services do not seem to be known to local authorities, who reported for 2013/14 that 1,035 adults with learning disabilities aged 18-64 were living in an acute/longstay 'health residential facility or hospital'.

Other local authority returns are available from 2009/10, although only for adults with learning disabilities aged 18-64, about where people are living, and some major types of living arrangement for people are shown in the graph below (again, notice the 2011/12 ‘bump’).

Most obviously, a large number of adults with learning disabilities aged 18-64 are living with family or friends (I suspect almost all with family) – more people than in any form of residential care and rapidly increasing over time (from 48,785 people in 2011/12 to 52,090 people in 2013/14).
‘Supported accommodation’ is the next most common type of living arrangement, also rapidly increasing over time (from 21,420 people in 2011/12 to 24,485 people in 2013/14). Tenancies with local authorities/housing associations or private landlords are also quite common and increasing over time (from 19,390 people in 2011/12 to 21,505 people in 2013/14), but owner occupied housing and sheltered housing have remained rare.

Taken together with the previous graphs, an optimistic view would be that local authorities are gradually disinvesting from residential care to reinvest in more progressive forms of supported housing. A more pessimistic view would be that residential care services are being rebadged as supported accommodation for cost-cutting purposes and the avoidance of regulation. Either way – the rapid increase in the number of adults living with family members suggests that any investment in supported housing is not keeping pace with the wishes of adults with learning disabilities (and their families) to live independently.



What community-based support do adults with learning disabilities get?

Local authorities also report on the number of adults with learning disabilities aged 18-64 getting different types of community-based service - as shown in the graph below this information is available from 2005/06 (little sign of a 2011/12 bump in the number of people getting these types of service).

Even after several years of ‘day service modernisation’, day services are still the most common community-based service used by working age adults with learning disabilities, although these statistics don’t tell us what these day services are and how much people are using them (2 hours or 5 days a week?) – the numbers are steadily decreasing over time (from 58,020 people in 2005/06 to 49,555 people in 2013/14, a drop of 15%).

In contrast, the number of people getting some form of home care service (again from these statistics we don’t know how much home care they’re getting) has rapidly increased (from 26,670 people in 2005/06 to 43,025 people in 2013/14, an increase of 61%).

The truly precipitate drop in recent times has been in the number of people getting support from professionals (from 43,810 people at their peak in 2008/09 to 21,035 people in 2013/14, a drop of 52% in five years).

‘Other’ services are now used by more people than professional support (up from 17,020 people in 2005/06 to 23,430 people in 2013/14), and the number of people getting equipment/adaptations has also increased over time (from 5,980 people in 2005/06 to 11,095 people in 2013/14: UPDATE this category includes telecare http://www.hscic.gov.uk/media/13551/RAP-Guidance-2013-14/pdf/RAP_Guidance_2013-14_v1.1.pdf pages 64-65). Meals on wheels are miniscule and reducing to near zero for working age adults with learning disabilities.


Despite their limitations, these statistics taken together might suggest a move towards supporting people in their homes (and/or a reduction in the staffed support that people have in different forms of supported housing) and away from supporting people outside their homes (although we don’t know too much about what ‘other services’ are). For me, the sharp reduction in professional support is the starkest change in this graph and requires better interpretation than I can offer.


Direct payments and self-directed support


Of course, in a supposed era of self-directed support for pretty much all adults using social care, part of the explanation of the graph above may be that adults with learning disabilities are using their personal budget for types of support that aren't ‘services’ as captured in these statistics. Unfortunately we don’t yet have regular national returns about this, but we do have information on the number of working age adults with learning disabilities reported as using direct payments and/or self-directed support according to local authorities.

The graph below shows this information from 2009/10 to 2013/14. Taking all forms of direct payment and self-directed support together, it shows a huge increase from 23,605 people in 2009/10 to 88,525 people in 2013/14 – this is a rise of 275% in four years, with people using direct payments/self-directed support now making up 62% of all working age adults with learning disabilities known to local authorities.

Looking in more detail, almost all of this increase has been in council-managed self-directed support, where the difference between life before and after self-directed support may not be immediately apparent to people and councils can retain a lot of control over what support is ‘allowed’. Increases in the number of people getting self-directed support in the form of direct payments are almost matched by reductions in the number of people getting direct payments not labelled as self-directed support, suggesting a certain amount of rebadging of direct payments over time.



Spending on social care services for adults with learning disabilities

So, how much do local authorities spend on services for adults with learning disabilities? Frustratingly this information is only provided for spending on adults aged 18-64, so it considerably underestimates total local authority spending.

However, the graph below summarises the main categories of gross expenditure by local authorities on services for working age adults with learning disabilities. The orange bars up to 2010/11 represent the £872 million a year of NHS spending on services for working age adults with learning disabilities that was transferred into local authority budgets from 2011/12.

As the graph shows, the total amount of local authority spend (including the NHS transfer) has steadily increased over time from 2005/06 to 2013/14, with generally above inflation increases (local authority inflators taken from the monumental PSSRU Unit Costs of Health and Social Care 2014 (compiled by Lesley Curtis) http://www.pssru.ac.uk/project-pages/unit-costs/2014/#sections for which we should all be profoundly grateful).

From 2011/12 to 2013/14 there have absolute reductions in expenditure on residential care, nursing care and Supporting People, matched by increases in expenditure on supported and other accommodation and other services combined (inflation has been minimal over this time period).



A breakdown of expenditure on these ‘other services’ for working age adults with learning disabilities (sadly without the NHS transfer ‘correction’ as we don’t know how much of the transferred cash was for these types of service) is in the graph below.

Total expenditure on these types of service has steadily increased at above inflation rates over this time period (although there may be the slight ‘bump’ in 2011/12 to take into account). The expenditure figures reflect the earlier figures about the number of people using services – recent reductions in spending on day services and assessment/care management, and increases in spending on home care, direct payments and ‘other’ services.


As well as trying to increase efficiencies by cutting spending on assessment/care management, it’s also apparent that local authorities are squeezing the costs of the services they’re buying. The graph below shows the unit costs (not adjusted for inflation) of a range of local authority funded services for working age adults with learning disabilities. While the unit costs for residential and nursing care and direct payments are more or less holding up in recent years, the unit costs of big ticket community-based services (day services and home care) have been reducing in absolute terms from 2010/11 to 2013/14. UPDATE: although the PSSRU Unit Costs document does not include a unit cost for Shared Lives (formerly Adult Placements), an estimate from a national survey of Shared Lives schemes (www.sharedlivesplus.org.uk/news/latest-news/237-government-minister-gives-backing-to-major-new-report-showing-shared-lives-care-transforming-lives-of-disabled-adults-and-older-people-across-england) is £654 per week (thanks again to Alex Fox for this information).


What does it all add up to?

Well, I’m asking myself the same question! There are clearly limitations in the information that is available – we need to know a lot more about older adults with learning disabilities, we can’t tell from these statistics how much people are getting (just whether they’re getting it or not), we don’t know if people are spending personal budgets on non-service supports, and perhaps most crucially these statistics can’t tell us about people‘s experiences of using services and supports. These statistics are also an example of the unhelpful (to put it mildly!) disjunction between social care support for children/young people and support for adults, and they do not cover health services. We also don't yet know the impact of the Cheshire West judgement, the new Care Act, and looming integration/absorption of social care and/by health, But hopefully this trot round the statistics gives a reasonable overview of social care support for adults with learning disabilities.

There are reductions in the number of people getting some types of service and associated reductions in spending – some of these seem to be longer term trends although increasing in pace in the last couple of years (residential and nursing care; day services) while some have happened more recently and drastically (professional support).

There have also been some increases over time in both numbers and expenditure – on supported accommodation and tenancies, adult placements, home care, and various forms of self-directed support – although this pattern may partly be a function of re-badging rather than more fundamental shifts in services being provided. These increases in numbers are partly being achieved by squeezing the cost of the services being provided.

Lastly, it seems likely that social services support is not keeping pace with increased need/demand, most starkly evidenced by the increased number of adults with learning disabilities still living with family members.

Beyond the available statistics, I have a worry that things are going to get worse before they get better – most of the projected cuts to local authority budgets have not yet taken place and relatively big social care budgets are an obvious place to look. I also worry that these trends, coupled with cuts to community facilities such as leisure centres, libraries and bus services, persistent rises in the cost of living, and difficulties in accessing community health services, will result in a severe narrowing of horizons for people with learning disabilities, as @MarkNeary1 has been highlighting. Will the aim become to ‘safely’ contain people at the lowest possible cost rather than support people to become flourishing members of their societies (remember in 2013/14 only 6.8% of working age adults with learning disabilities known to local authorities were in any form of paid or self-employment, no matter how part-time)?


Not much of a grand conclusion is it – it’s complicated. Still, I hope this post is helpful.

11 comments:

  1. Helpful to have done this and maybe it'll give us a benchmark for the future but as you say it's not really helping us to know exactly what's happening. The worry is that along with squeezing the costs on community services, the theory of community connecting as a preventive may fall flat on its face if generic community resources are being cut and shut. Anecdotally from agencies who want the right staff this is resulting in difficulties in recruiting and my worry about what the calibre being recruited by some less good agencies is or will become. We're already seeing the knock-on of social care cuts in pressure on NHS and police - let alone homelessness...and as you say worryingly we've the biggest cuts yet to come and we don't even know who the people are who are not being counted... as criteria for help harden noone is tracking what happens to people with ld who used to be helped and are no longer. Are there any more helpful stats that could be collected and is there a way to join up what exists at the moment - schools maybe linking into adult stats. But who's going to track the casualties of the cuts,and changing policies or the waste from the lack of joined up policy.. I wonder if the Kings fund Barker Report might help at least joining up Health and social care - we do know from the assessment and treatment units that we see an amazing misuse of resources here which could be better joined up in the community

    ReplyDelete
    Replies
    1. Thanks for this - absolutely agree. There are big changes coming to the way some of these statistics are collected which will show in data for 2015/16 - not sure if this will be helpful or not but we'll see.

      Exercises like the Joint Health and Social Care Self Assessment Framework are trying to encourage local areas to think and report information in a joined-up way (www.improvinghealthandlives.org.uk/publications/1226/Joint_Health_and_Social_Care_Self-Assessment_Framework_2013_-_Detailed_report_on_number_questions www.improvinghealthandlives.org.uk/publications/1233/Joint_Health_and_Social_Care_Self-Assessment_Framework_RAG_and_thematic_analysis) but this doesn't seem to be feeding through to proper joined-up strategic planning routinely as yet (www.improvinghealthandlives.org.uk/publications/1240/Joint_Strategic_Needs_Assessments_2014_How_well_do_they_address_the_needs_of_people_with_learning_disabilities?).

      And there are prospects for linking sets of information across different services, but they do all rely on people being identified somewhere in the first place.

      I do have some worries about the way 'integrated' services could go - absorption by a health service mindset?

      Delete
  2. Yes, Chris, very helpful. I won't say more as the last post I wrote disappeared. I'll resume if this gets through, Jan

    ReplyDelete
  3. It did, so I will resume. It is helpful to have statistics, even if they do not tell us everything. The decline in professional involvement is quite staggering. I agree about parents and families becoming, increasingly, the backstop. Families seem to be caught between a rock and a hard place. Facing reductions in local support of the conventional kind, like day centres, often having to take responsibility for the Direct Payment, and facing the threat of distant and unaccountable placements if they cannot manage, and their relative has complex needs, mental health issues, or behaviours which threaten. Small groups led by families, like Sara Ryan's, are doing a valiant job, but where are the professional and, other than yours, academic voices speaking up with them?

    ReplyDelete
  4. Thanks for this Jan - yes, agree statistics can only ever be partial (in probably more than one sense of the term) but as long as we see them for what they are (and are not) they can be helpful. Yes, agree entirely about the position that families are being put in and I'm astonished on a daily basis at what Sara Ryan and the #justiceforLB crew are managing to keep on doing in the face of multiple extreme crapitude. I guess I can't speak for others (professionals or academics) but there are certainly quite a few academics supporting #justiceforLB in a range of ways that might be more or less visible depending on people's preferences - the more the better of course!

    ReplyDelete
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  8. Thanks for this Jan - yes, agree statistics can only ever be partial (in probably more than one sense of the term) but as long as we see them for what they are (and are not) they can be helpful. Yes, agree entirely about the position that families are being put in and I'm astonished on a daily basis at what Sara Ryan and the #justiceforLB crew are managing to keep on doing in the face of multiple extreme crapitude.

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    ReplyDelete
  9. Interesting post. I think we're doing some very interesting things here in the United States with assisted living and home care. More and more people now have access to the care they need than ever before. My company provides assisted living in Manchester NH and in many of the surrounding communities and we're definitely witnessing an uptick in service demand.

    Thanks for your insight!

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