A second Ferrero Rocher sir? Transforming Care

Uh oh, this Ferrero Rocher thing is getting out of hand. The ambassador has spoiled us with a veritable pyramid of material relating to people with learning disabilities and/or autism. This includes:

A first report of findings from the Learning Disability Census 2014 – following on from the 2013 Census (but with some revised questions), this gained information from providers about people with learning disabilities in specialist learning disability inpatient services on 30^th September 2014 – available here http://www.hscic.gov.uk/catalogue/PUB16760

A report summing up in great detail what the ‘Transforming Care’ programme has been doing over the two years since it started, it also contains some information from the latest quarterly data collection from commissioners about how many people with learning disabilities are in specialist inpatient services. This also has an easy-read version https://www.gov.uk/government/publications/Winterbourne-View-2-years-on

A report setting out future plans for a rebooted ‘Transforming Care’ programme, based partly on a response to the ‘Time for Change’ report published last October - I’m trying to not give a certain person the oxygen of publicity. This is available here (I couldn’t find an easy-read version): http://www.england.nhs.uk/ourwork/qual-clin-lead/ld/transform-care/  As an aside, I still can’t decide if it was an oversight or a very subtle joke that ‘Time for Change’ is also the title of a song by Motley Crue http://www.azlyrics.com/lyrics/motleycrue/timeforchange.html

There are good summaries from David Brindle in The Guardian http://www.theguardian.com/social-care-network/2015/jan/29/winterbourne-view-two-years-on-report and Andy McNicoll in Community Care http://www.communitycare.co.uk/2015/01/29/learning-disability-care-fines-providers-stronger-right-challenge-placements-among-latest-post-winterbourne-reforms/ .

Like a pyramid of Ferrero Rocher I’ve found this welter of material hard to digest in one go. I had a first bite about the Learning Disability Census http://chrishatton.blogspot.co.uk/2015/01/unwrapping-first-ferrero-rocher.html  In this one I’ll be sharing some thoughts, in no particular order or making any logical sense, on the rebooted ‘Transforming Care’ report. And like a Ferrero Rocher (work that metaphor!) there’s a shiny wrapper but a kernel of a nut that’s hard to crack – whether you like the product or not is probably a personal preference.

Generally, there’s still a lot to be worked out, with most of the more difficult issues kicked down the road in ‘Time for Change’ (see http://chrishatton.blogspot.co.uk/2014/11/the-times-they-are-not-changing.html ) still not (yet?) resolved. I must admit I’m a bit conflicted about this – I would much prefer that a bit more time is taken to really get things right rather than going for quick and pointless, but at the same time a lot of people’s lives have, are being and will continue to be blighted (or even ended) because of a lack of urgency. And the report is markedly short on timelines for getting stuff done – perhaps these will emerge as part of the mooted outcomes framework, but as the latest Census data show, policy aspirations without clear targets are blatantly ignored. Possibly the most promising vehicle for this in the plan is to get better, explicit standards into the NHS Standard Contract – it will be important to see how exacting these standards are, and whether any possible sanctions will be sufficient to change the behaviour of commissioners and providers.

Although it’s badged as a joint document from a whole bunch of organisations (the familiar whiff of concordat in the air), it seems to me that NHS England are making all the running and are the ones (possibly with the CQC) making any commitments about doing things differently. I don’t think I’ve seen anything in the document suggesting that the LGA and ADASS are going to push local authorities to do anything at all, beyond the usual vague statements about moving towards pooled budgets etc.

The Ministry of Justice seem dangerously disconnected/absent from this . They’re not one of the ‘authors’, and I think there were only a couple of mentions about how things are going to be discussed with the MoJ. But they’re obviously a really important piece of this jigsaw puzzle, given that 25% of people in inpatient services have MoJ restrictions on their discharge. How are offenders with learning disabilities being identified as such, how does liaison and diversion work, how are decisions made about MoJ restrictions (and is there any evidence that they’re doing a good job)? On the cost-shunting principle, is there a financial incentive for the MoJ to get people diverted into health systems rather than going into overcrowded prisons? And of course MoJ functions such as the Court of Protection are really important (and possibly more so if ‘rights to challenge’ are going to happen before people are admitted to an inpatient service?).

It looks like the Care Quality Commission are committed to getting tougher, particularly with regard to enforcement powers. But inevitably this will happen after damage has already been done – why are commissioners being let off the hook in terms of their responsibilities and leaving it to the CQC to be the bad cop? (and with regard to Foundation Trusts Monitor are nowhere to be seen). It would have been good to see a clearer statement that CQC will proactively state that they will not register certain types of services (all those ‘autism hospitals’ and suchlike coming up on the rails).

The document mentions at various points that ‘stakeholders’ including people with learning disabilities and/or autism, families etc will be involved, but not yet any detail on how this will happen. The organisational chart has “Stakeholder Engagement” as something of a floater – will there be real power for people with learning disabilities and families here?

There are also various mentions of consulting on measures to ‘strengthen rights’ – presumably this is the rumoured Green Paper (they could just adopt the upcoming second draft of the #LBBill and save themselves some time…). Is a Green Paper not mentioned as such to give the civil servants some wriggle room, either to kill it altogether or to upgrade it to a White Paper?

The programme places a lot of weight on Care and Treatment Reviews as the forcing agent to drive people coming out. The early numbers reported (1,032 Care and Treatment Reviews, of whom 566 people have been ‘discharged’ – as @DavidGilbert43 has pointed out, a delightful term) are encouraging, but will they be enough to drive the big changes needed in the absence of real changes to commissioning structures…

…Which leads me to our old friends, the commissioners. Although the document is far too polite to call it bluntly, it is damning about commissioners, saying that (I paraphrase somewhat) despite the fact it’s bleedin’ obvious (and has been for some time) what good looks like, some commissioners still don’t have a clue and want to be told exactly what to do in the form of a ‘service model’ which they can apply robotically. First, this is extreme dereliction of duty on the part of commissioners. Second, it seems the Winterbourne JIP (as I think an example of a more generally applied weak ‘influencing and sharing good practice’ approach) hasn’t been able to touch these particular commissioners – perhaps they’re not just ignorant, perhaps it’s because they don’t give a toss. Transforming Care doesn’t say that anything is going to change about current commissioning structures at all (beyond some general statements about encouraging CCGs and LAs to move towards pooled budgets). Also, NHS Specialised Commissioning Teams (which commission a lot of the people in more secure inpatient services) are pretty much absent from being mentioned in this plan.

This weak ‘influence’ model of supporting local areas (this works well when local areas want to be supported, but not when they’re really not interested) will continue, except in ‘The North’ [is this the North East and the North West? The North East has much higher numbers/rates of people in inpatient services than the North West, but the North West has Calderstones…] where there will be a ‘reconfiguration taskforce’. It will be very interesting to see if this is more directive and butt-kicking than what happens elsewhere, and if this is more effective in driving change. The geographical focus is also a bit odd when you look at the regional figures for people in inpatient services, where after the North East the second biggest region for rates of people in inpatient services is the East of England – is this a Norman Lamb nimby effect?

The plan discusses at length a ‘robust admission gateway process’. With legally enforceable rights for people and families to underpin this, it could be a very welcome development. As it’s couched at the moment, I’m concerned that the proposed process will allow admission to an inpatient service if there is no local available alternative – surely that is precisely the problem right now and is a bright shining get-out clause! I think partly because ADASS and the LGA haven’t stepped up to the plate there is little convincing detail here about how sufficient reliably good community supports are going to be developed (and paid for).

The emphasis on more personalisation and personal budgets (and personal health budgets) is very welcome if they are done right – how many people will these be for, who controls how they are done, at what level will these be funded (or what the processes will be to decide this), and will they include the equivalent to an ATU cost in the budget (rather than just being for ancillary extra stuff around a pre-determined residential component)?

The ‘social investment’ stuff from ‘Time for Change’ seems somewhat downgraded to me – there is now no mention of any contribution from government (Libor fund or otherwise) and the plans seem to be about finding a couple of local areas to pilot something (so no clear strategic direction about what, how or in what circumstances social investment would be a good idea). To get an idea of how such ‘investment’ might be spent it’s worth having a look at Appendix 2 of the Winterbourne View report (which I have largely avoided here as it’s largely a record of past activity and seems to have been strategically overtaken by ‘Transforming Care’) – this records area by area how £7 million of DH capital grant money has been used.

The document talks about every local area establishing an ‘at risk’ register of people who might have the potential to end in an inpatient unit. This is an interesting idea but potentially divisive in practice – do you want to be on the register to trigger some form of support or do you want to stay off to avoid a bad rep that will stay with you for a long time? And will this include children? (who are largely absent from this report).

That’s the end of my relatively undigested gobbets of reaction to ‘Transforming Care’. I share with @AliciaWood_HSA in her quite marvellous blogpost “Merry xxxxxxx Christmas” http://housingandsupport.blogspot.co.uk/ a feeling that celebrating and sharing the good only gets you so far, and misses the malignity of many systems (and people within them) when it comes to people with learning disabilities (and if you doubt this, just read @sarasiobhan’s blog https://mydaftlife.wordpress.com/ ).

I’ll finish with this quote from Nigel Evans, the MP for the constituency that includes Calderstones, about its phantom closure (http://www.lancashiretelegraph.co.uk/news/11756016.CLOSE_IT_DOWN__Expert_advises_national_NHS_chiefs_to_shut_down_Calderstones_Hospital/ ): “There is always going to be a need for secure units, so I don’t see how every patient can be released into the community quite frankly. And I don’t really see the benefit of moving patients to smaller units around the country, as I’d still say there’s a need for big and more centralised institutions so that economies of scale kick in. My belief is that Calderstones is essential.”

Just ignorance, or something else?

Unwrapping the first Ferrero Rocher - the Learning Disability Census

Ah, yesterday the ambassador has spoiled us with a veritable pyramid of material relating to people with learning disabilities and/or autism. This includes:

A first report of findings from the Learning Disability Census 2014 – following on from the 2013 Census (but with some revised questions), this gained information from providers about people with learning disabilities in specialist learning disability inpatient services on 30^th September 2014 – available here http://www.hscic.gov.uk/catalogue/PUB16760

A report summing up in great detail what the ‘Transforming Care’ programme has been doing over the two years since it started, it also contains some information from the latest quarterly data collection from commissioners about how many people with learning disabilities are in specialist inpatient services. This also has an easy-read version https://www.gov.uk/government/publications/Winterbourne-View-2-years-on

A report setting out future plans for a rebooted ‘Transforming Care’ programme, based partly on a response to the ‘Time for Change’ report published last October - I’m trying to not give a certain person the oxygen of publicity. This is available here (I couldn’t find an easy-read version): http://www.england.nhs.uk/ourwork/qual-clin-lead/ld/transform-care/

There are good summaries from David Brindle in The Guardian http://www.theguardian.com/social-care-network/2015/jan/29/winterbourne-view-two-years-on-report and Andy McNicoll in Community Care http://www.communitycare.co.uk/2015/01/29/learning-disability-care-fines-providers-stronger-right-challenge-placements-among-latest-post-winterbourne-reforms/ .

Like a pyramid of Ferrero Rocher I’ve found this welter of material hard to digest in one go, so this first post puts together some of my initial reactions based on a quick read of the Learning Disability Census. By saying this is the first post I’m not committing myself to when (or if!) there will be another one around this subject!

The Learning Disability Census 2014 gives us better information than we’ve had before. For me it highlights the unwillingness of the providers of these inpatient services to give an inch without serious pressure.

A major headline figure is that there were 3,230 people in these inpatient units in 2014, compared to 3,250 people in 2013 (although in 2013 providers didn’t report 370 people that they should have done – these people were still inpatients in 2014). This is hardly a transformative reduction in the number of places, and is still weirdly higher than the 2,600 people in inpatient units on 30 September 2014 reported in quarterly data collected from commissioners by NHS England (a reduction from the, erm, 2,601 people on 30 June). Who are the 600 people in these units who are not known to commissioners? From the Census it looks like they are being commissioned by NHS Commissioners outside England, local authorities, commissioners from outside the UK and funded privately – in any plans we need to make sure these people are not forgotten.

By my reckoning (which involves some shuffling of the 370 people compared to the report), 1,275 people were in the same inpatient service in 2013 but not 2014, 885 people were in the same inpatient service in 2014 but not 2013, and 2,345 were in the same inpatient service in both 2013 and 2014. The headline ‘length of stay’ figures in the Census report (an average length of stay of 1,034 days – i.e. three years – virtually no change from the 1,065 days in 2013) only ask about how long people have been in their current inpatient unit. In revealing new questions in the 2014 Census, it turns out that 1,380 people (43% of all people in the Census) had been directly transferred from another specialist inpatient unit. When time in previous services is taken into account, the number of people who had been living in an inpatient unit for five years or more increases from 565 people to 1,060 people (a third of everyone in an inpatient unit).

So while there is some movement into and out of inpatient services, much of it is movement within the inpatient service system. There are signs in the Census that this movement is towards the independent sector: the number of people in NHS services went down from 1,851 people in 2013 to 1,730 people in 2014, while the number of people in independent sector services went up from 1,399 people in 2013 to 1,500 people in 2014. People also tend to stay longer in independent sector vs NHS services – signs that the Transforming Care programme is not really touching the independent sector and NHS services are shuffling off their problem to the independent sector to deal with?

The 2014 Census shows that many of these services are effectively putting up two fingers at any national policy attempts to drive them towards better practices.

Why are there only 15 people subject to a Guardianship order designed to support people to live as independently as possible, when there are over 600 people (20%) in these services with an ‘informal’ legal status? When another 635 people (20%) are subject to a Ministry of Justice restriction order, how come over half of them are in general or low secure services?

Why are 43% of women and 21% of men on mixed-sex wards despite the Department of Health wanting to eliminate these wards? Particularly as providers rate 44% of men (as opposed to 16% of women) being at risk of sexual behaviour that would harm other people and rate 61% of women (as opposed to 45% of men) being at risk of injuring themselves?

Why aren’t services more local to the communities that people have come from? (an average of 60.5km away in 2013 vs 59.5km away in 2014?)

Why has the number of children aged under 18 in inpatient services (160) not changed from 2013 to 2014?

The percentage of people reported as experiencing self-harm (26% in 2013 vs 25% in 2014) and physical assault (22% in 2013 vs 23% in 2014) in the last 3 months has stayed static, with accidents (21% in 2013 vs 18% in 2014) reducing slightly. As, despite DH policy, have levels of hands-on restraint (34% of people experienced this in the last 3 months in 2013 compared to 33% of people in 2014) and seclusion (11% of people in 2013 and 2014).

Most shockingly, the already obscene percentage of people getting antipsychotic medication in the last month has increased, from 68% of people in 2013 to 73% of people in 2014 (with a big increase in people being regularly prescribed them – bigger doses maybe?) – if you’re on antipsychotics you’re also more likely to get rapid tranquilisation, restraint and seclusion.

Is this what you would expect for an average £3,426 per week? (totalling up to £575 million per year)

There are also signs of belated adaptation to changing circumstances, possibly as a defensive move to protect their position. For example, in 2014 200 people were subject to Deprivation of Liberty Safeguards, an increase of 512% (yes, this isn’t a typo) from 2013. And how else to explain the number of people ‘not dischargeable’ due to behavioural risks to self or others or mental illness increasing by a whopping 80% from 496 people in 2013 to 895 people in 2014?

Perhaps the Care and Treatment Reviews (according to ‘Transforming Care’ 1,032 have been done so far (all with people in inpatient services at April 2014 with no discharge plan or discharge date) with 566 people discharged by January 2015) are the magic bullet that happened too late to show in the Census? Perhaps the other measures in ‘Transforming Care’ will finally see significant shifts by September 2015? I hope so – all I know is that this Census suggests that the providers aren’t going to go quietly. For a sobering reminder of the fights that are still ahead, I suggest you look at this article in the Lancashire Telegraph about the apparent mooted ‘closure’ of Calderstones (many apologies to the person who sent this link to me as I haven’t been able to track back to who are you and to credit you, but thank you) http://www.lancashiretelegraph.co.uk/news/11756016.CLOSE_IT_DOWN__Expert_advises_national_NHS_chiefs_to_shut_down_Calderstones_Hospital/

If anyone ever thinks we’re post-Winterbourne, just read that and weep.

To have and to hold: Identity and people with learning disabilities

Well, you can blame @neilmcrowther for this one. In a recent pithy blogpost (https://theindependentlivingdebate.wordpress.com/2015/01/08/home-is-the-scaffolding-of-the-self/ ), Neil posted a lovely quote from a chapter by Hilde Lindemann on the importance of home for honouring personhood. I was so struck by it that I dug out the chapter (in a book with the exciting but intimidating title of ‘Cognitive disability and its challenge to moral philosophy’, which has sat on my bookshelf for quite a while exuding a scary aura of cleverness), and it provided a way of making sense of so many things for me that I thought I’d share it. I’m aware that I have the enthusiasm of an ignorant newbie about this way of thinking, so apologies to those of you who are much better informed for whom this will be stating the bleedin’ obvious.

The chapter discusses identities as bundles of narratives, constructed by/for/with a person within social and material webs; how important the continual revision of these identities is; the importance of families, other people close to you and home in helping you ‘hold’ your identity when it feels under threat; and the conditions under which these identities can flourish or be constricted. Although the chapter is hooked on to a discussion of people with dementia and their families, it had a much wider relevance for me, with obvious connections to people with learning disabilities and, well, everyone really, including my own life and my family. In particular, it got me thinking about how the way services typically go about their business can do real violence to the identities of people with learning disabilities, their families and others who are intimately involved in helping to ‘hold’ people’s identities.

Because Hilde Lindemann expresses her thinking better than I can paraphrase it, I’ll quote extensively from her chapter and add in a few observations of my own about how they might be relevant to people with learning disabilities and those around them.

“In the sense in which I am using the term, an identity is a representation of a self. It consists of a tissue of stories, constructed from not only first-person but also many third-person perspectives, depicting the more important acts, experiences and relationships, and commitments that characterize a person and so allows that person and those around him to make sense of who he is. Because we change over time, some stories in the narrative tissue cease to depict us faithfully and – ideally – recede into the background, to be replaced with newer narratives that – again ideally – represent us more accurately” (p. 162).

I really like this way of thinking about identity, as it recognises that identity is not a property of individuals but is continually made (and remade) by a whole host of people and circumstances – it’s inherently relational. I also like how identity can be gradually reshaped over time, and how important it is to allow this to continually happen. Hopefully the attractiveness of this for thinking about people with learning disabilities is obvious, not least that it’s a way of thinking about identity that applies to everyone while comfortably encompassing people with learning disabilities.

“Families are the primary sites of identity formation, which often begins even before birth… They do this through material practices…that welcome the child into the family, but they also do it by weaving around the expected infant the stories that form its proto-identity. Mostly, these will be stories of relationship…but the tissue of stories will also contain master narratives – the familiar stories permeating our culture that serve as summaries of socially shared understandings” (Lindemann, 2010, p. 162).

Even at this stage, is this where the battle for identity starts for families, against professional attempts to constrict the child’s identity sometimes before he or she is even born? What messages do pre-natal screening programmes send to parents? And when professionals are ‘breaking’ sorry ‘sharing the news’, what are they saying to parents? All too often it seems to be “Don’t get your hopes up, get those unrealistic ideas out of your heads, don’t dream big, and get ready to knuckle down and be grateful for whatever support you get”.

What work are assessments doing, right from the off? Pinning an emergent identity to a restricted range of ‘skills’ that the child by definition isn’t very good at (with a professional always ‘pleasantly surprised’ if a child does ‘better than expected’ on one of these assessments)?

And what violence is being done by the way that ‘evidence’ and ‘facts’ are marshalled by professionals when talking to families? First, the ‘evidence’ is likely to be some way behind the reality (particularly if the evidence is gleaned from when professionals were trained) – a 20 year old medical textbook is likely to talk about people with Down’s syndrome rarely surviving through to adulthood, whereas an important health issue for people with Down’s syndrome now is early onset dementia. This matters because the evidence will always be relatively pessimistic and serve to constrict and disrupt the weaving of identities from very early on. And of course this evidential pessimism is self-fulfilling – for example using ‘evidence’ of a short lifespan to deny the heart surgery that would considerably extend a child’s life. Next, this ‘evidence’ is always an aggregate or is turned  into expectations about a ‘typical’ disabled child, when we all know that there’s no such thing as anyone being a typical anything – but again reinforcing a restrictive expectation.

“Two kinds of stories are required to represent selves that are continually growing and changing even as in some respects they remain the same. The first kind is backward-looking; these stories depict who someone is by offering a causal explanation (“She’s feisty, all right. Even in the womb she kicked like she meant it”). The second is forward-looking; these set the person’s future field of action (“When you’re older you’ll be a good speller just like Charlotte, only without the web”). (Lindemann, 2010, p. 162).

It feels to me that professionals and services often deny all these aspects of changing identities when it comes to people with learning disabilities (and their families, for that matter). Backward-looking aspects of a person’s identity are denied by the person being fixed in a perpetual present based on assessment and only paying attention to people’s behaviour in relation to those professionals and services (“You say she’s not like that at home? Well let’s get her in for an assessment and see what’s really going on” – Mark Neary’s latest blogpost makes this point very eloquently https://markneary1dotcom1.wordpress.com/2015/01/24/trouble-for-humans/ ). Forward-looking aspects of identity (@sarasiobhan’s “imagined futures”) are often systematically ignored, or only attended to in the narrowest of terms (“Which service will they go to next?”). And parents are often treated similarly, as more or less malfunctioning state-support-relieving machines that only need maintenance when they’re close to breaking down (“What’s that horrible screeching noise? A bit of Respite-D-40 will sort that”).

“Our identities matter morally because they function as counters in our social transactions, in that they convey understandings of both what we are expected to do and how others may or must treat  us.” (Lindemann, 2010, p. 163).

I wonder how professionals would respond if you asked them what a person with learning disabilities was like as a person, and what their  understanding was of the person’s hopes and dreams? I’d wager that many professionals would be a bit stumped at first, then the better ones would be able to say something meaningful with the caveat that this way of talking about the person wasn’t really professionally allowed so it would just be their view ‘as a person’ or something similar. Is the identity of a person with learning disabilities solely a ‘service user’, ‘client’ or ‘consumer’? What about a fun-loving guy, a hard worker, a person so kind they’d do anything for you, a woman who loves, loves, loves music, a fighter for justice, a daughter, brother, mother, uncle? Why are these on principle written out of the service story about a person?

This is where person-centred planning, circles of support, one-page profiles and personalised support have the potential to be so radically different – all these could be seen as ways of trying to offer support to a person (and those around them) that start from that person’s identity, built with the person and those close to her or him, at home with material markers of identity present. They also have the potential to encourage the continual development of the person’s identity over time rather than fixing a person at a particular point in their life. But I suspect for many people and their families person-centred planning or personalisation just doesn’t happen like this, and preserving their radical features feels like walking against the blast in a wind tunnel pushing you towards the giant identity mincer of restrictive ‘traditional’ service cultures. And as a worker in a service, if you really ‘get’ someone, you can be accused of being “too friendly” or “blurring your professional boundaries”.

“Just as families are primarily responsible for initially constructing the child’s identity, so too they are primarily responsible for holding the child in it. They do this by treating him in accordance with their narrative sense of him, and in so doing they reinforce those stories. But identity maintenance also involves weeding out the stories that no longer fit and constructing new ones that do. It’s in endorsing, testing, refining, discarding, and adding stories, and then acting on the basis of that ongoing narrative work, that families do their part to keep the child’s identity growing.” (p. 163).

As I’ve mentioned above, it seems to me that professionals and services can be quite bad at supporting the continual development of a person’s identity over time. First, by denying important dimensions of a person’s identity altogether, or restricting/replacing it with an impoverished vocabulary/identity of skills and behaviours. Second, by fixing a person in a perpetual present. Third, by not recognising change in identities over time (either by weeding out aspects of identity that are no longer relevant or by recognising emergent aspects of identity). And finally, by not encouraging the experiences and relationships that would allow new aspects of identity to grow.

“As she grows, the child contributes more and more to this process herself, as do her playmates, teachers, neighbors, and the others she encounters in her life. And just as important, these others challenge her, interrupt certain patterns of behaviour, encourage self-transformations of various kinds, help or force her to grow in particular directions… But when the kids at school call her names, when he older brother tells her she’s adopted, when she doesn’t pass the exam – when, in short, her grip on herself is temporarily shaky, what she needs most is to be held in her identity. It is then that the adults in her immediate family have the special job of reminding her, by how they interact with her, of who she really is” (p. 163).

I think there’s an awful lot in this short quote that is really important for people with learning disabilities. In segregated schools and services, what emergent identities are shaped by teachers and playmates? Do other people (in the street, at the cinema, at the swimming pool) encourage exploration and self-transformation? Or are interpersonal environments for people with learning disabilities on the whole at best restrictive in identity terms (“Best if you don’t try that dear”) and at worst actively hostile. And in a largely restrictive and possibly hostile social world, this places a huge responsibility on families (especially if they’re not being supported in this by professionals) to hold the person in his or her identity.

“It’s not only other people who hold us in our identities. Familiar places and things, beloved objects, pets, cherished rituals, one’s own bed or favourite shirt, can and do help us to maintain our sense of self. And it is no accident that much of this kind of holding goes on in the place where our families are: at home” (pp. 163-164).

When I read this quote, the inhuman practices when people are sent to inpatient units really struck me with some force. As @MarkNeary1 has said so clearly, the practice of sending someone who is already distressed to a place with absolutely no material markers of your identity (even your favourite shirt might be shrunk, lost or given to someone else out of the laundry), together with an insistence that you cannot see your family (possibly the only people who can hold you in your identity when it’s under such threat) while you ‘settle in’, can only be seen as a deliberate attempt to break down a person’s identity completely.

“Good holding usually requires that the stories constituting the identity keep open the person’s field of action, for this is how the narrative tissue captures the way in which selves are continually moving targets. One set of stories that closes down that field are the hateful or dismissive master narratives used by the members of a dominant social group to justify their oppression of another, less powerful group. These identities… unjustly constrict the agency of those who bear them… Good holding requires us to weed out these oppressive narratives from the stories we use to identify anyone. There is another set of stories that constrict people’s agency. By contrast to morally degrading master narratives that misrepresent entire classes of people, individually constricting stories might be both true and correctly proportionate but fail to hold well because they look only backward and never ahead. When we interact with someone solely on the basis of these stories, we impede the person’s ability to change” (p. 165).

This post is already very long so I don’t want to labour the point here, but it’s clear that people with learning disabilities and their families operate in a society where the ‘master narratives’ are designed to severely restrict people’s field of action, whether in the name of caring, indifference or hostility. Helping your child to grow in their identity is a minute-by-minute tightrope for any parent (or maybe that’s just me?) – for parents of a child with learning disabilities, why does it have to be made a lifelong act of resistance?

Reference

Lindemann, H. (2010). Holding one another (well, wrongly, clumsily) in a time of dementia. In E.F. Kittay & L. Carlson (eds.), Cognitive disability and its challenge to moral philosophy (pp. 161-169). Chichester: Wiley-Blackwell.

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.