Thursday, 2 November 2017

Employment statistics - quick update

A whole new raft of social care statistics relating to 2016/17 came out last week from NHS Digital. This includes statistics on the number of working age adults with learning disabilities getting long-term social care support who are in paid/self employment, according to councils. The statistics are available here although they’re a bit scattered this time around.

The blogpost is a very quick update on the overall paid/self employment figures over time, as shown in the graph. Up to 2013/14, the information was collected for adults with learning disabilities aged 18-64 who were known to councils (so not necessarily getting regular social care support). From 2014/15, the information was only collected for adults with learning disabilities aged 18-64 who were identified as having learning disability as their primary reason for support and who were getting long-term social care support. This means we can’t assume continuity in the information collected over the whole time frame.

Even with this caveat, the statistics on employment show that things are getting (even) worse. The grey bars in the graph show that by 2016/17, only 5.7% of this population of working age adults with learning disabilities were reported by councils to be in any form of paid/self employment, no matter how part-time. This has dropped even from 2014/15, when the employment rate was 6.0%.
The gender gap in employment rates has also persisted; the purple line shows that in 2016/17 6.2% of working age men with learning disabilities were in paid/self employment, compared to 5.0% of women (the blue line).

One last quick thing I want to mention is the extreme variation in reported employment rates between councils. I don’t know whether this reflects radically different practices in supporting people with learning disabilities into employment and helping people to maintain employment, different employment prospects, different reporting practices across councils, or some combination of these. Why can Bexley report an employment rate of 20.6% when Lambeth reports an employment rate of 0.6%? Or Hartlepool report an employment rate of 15.2% when South Tyneside reports an employment rate of 1.2%? One thing that gives me pause about the validity of these statistics is that in 2015/16 councils reported that the employment status of over a third (37.7%) of working age adults with learning disabilities getting long-term social care support was ‘unknown’. If these people’s employment status was known, what would reported employment rates be?

If this is really a policy priority, it would be good to see some concrete evidence of it.

[Update: in the original version of this post, I cited the overall rate of employment as 5.2% when it is 5.7% - I have corrected this. 5.2% is the median employment rate looking across local authorities].

Tuesday, 3 October 2017

A real return on investment - investing in people with learning disabilities

I’ve been following @garybourletLDE , @AliciaWood___ , @hillsideliz , @SScown , @LearningDisEng and others who have been subjecting themselves to the UK (English?) party political conference season, asking the questions that need to be asked and trying to direct politicians’ attention to the realities of the lives of people with learning disabilities.

When local authorities are considering where to put the money they are entrusted with, what are they looking for? Among other things, I think they’d be wanting: 1) improvements to the health and wellbeing of people in their local communities; 2) relatively stable, connected communities with good levels of employment in good jobs; 3) good, sustainable and affordable housing that matches the needs of local communities; 4) their investment to be recirculated within local businesses and enterprises; and 5) for their investment to be efficient and cost-effective.

I think a local authority investing in really good support for people with learning disabilities in their area will achieve everything I’ve listed above, in a maximally efficient and cost-effective virtuous circle. What do I mean by really good support? Something like the following:

  1.  First of all, use the resources that are available in your local area. Invest properly in vibrant self-advocacy organisations and family-led organisations. They will bring you expertise, creativity, and local knowledge of life’s realities. If you let them, they will generate cost-effective solutions rooted in local communities, at a far more reasonable rate than management consultants. And by investing properly in them, you will be helping to establish entrepreneurial local organisations that can offer vital support to a wide range of local organisations, such as training, consultancy and the production of accessible information for local health and social care services, leisure services, the police, transport and businesses.
  2. Invest in local communities to help people live connected, fulfilling lives locally – Community Circles being one example that also encourages local community cohesion. Shared Lives is another example of a living option that some people may choose which does not require additional housing, matching people with learning disabilities with others in their local community who have space and a willingness to share that space. These are really cost-effective, with the social care investment being kept and shared within local communities.
  3. With the support of self-advocacy, families and local enterprise, focus the commissioning of support for people with learning disabilities on small, local enterprises, developed through collaborative ideas generated from and by people with learning disabilities and families. This will develop efficient, cost-effective local enterprises with a genuine commitment to people with learning disabilities and the locality. Investment at a council level in supporting these small enterprises with pooled functions like HR, payroll, legal support etc will ensure they stay efficient and focused. Work to promote ‘scaling across’ rather than ‘scaling up’ – local small enterprises can encourage others to develop, rather than forcing them into expanding hugely into large enterprises that become sclerotic, remote and less efficient, with profits from local investment becoming siphoned out of the locality. Co-operatives, community interest companies and similar social enterprises are relevant here. Radically change bureaucratic procurement and tendering processes that stack the deck against small, innovative local entrepreneurs, and use the money saved to invest in ways to keep developing and maintaining local organisations.
  4. Ensure that you invest properly in these local support organisations, such that support workers can be decently paid. This will encourage a stable, skilled and committed workforce that will stay in the area and have money in their pockets to spend in local businesses, rather than ending up with a transient, unstable workforce.
  5. Support local businesses and organisations of all sorts to be hospitable to people with learning disabilities. They’re missing out on potential customers and contributors if they’re not.
  6. Invest heavily in good quality supported employment support with people with learning disabilities, developed and delivered locally. Many, many more people with learning disabilities want paid work than currently have the opportunity to do so, and on-the-job support and support to keep people working well in jobs is a highly cost-effective investment. Local employers gain a stable workforce with bespoke on-the-job training to do specific tasks they need doing, and ongoing support to keep people working well. Ensure that the paid work is good work at levels and with numbers of hours that pay people a decent wage. This will ensure that people with learning disabilities have disposable income, which they will spend overwhelmingly locally, recirculating the investment straight back into the locality. All sorts of other good things for people with learning disabilities and local communities follow from good work. Also encourage entrepreneurship and the development of enterprise amongst individuals and groups of people with learning disabilities.
  7. Invest in local, attractive, affordable housing that is accessible to everyone, including people with learning disabilities. Put the investment into supporting people with learning disabilities within local homes in local neighbourhoods to lead active lives as part of their local communities – belonging, contributing. This investment will again put money back into local businesses (as people maintain their homes, buy food and clothes, and enjoy themselves in local leisure facilities that help keep communities vibrant places to be). For many people, you will also be helping their families too, among other things in terms of their potential for paid employment themselves.
  8. Provide guaranteed minimum personal budgets (and personal health budgets, and integrated personalised commissioning) for people over long periods of time (5 years? 10 years? longer?). Strip away needless bureaucracy in assessing/reviewing/monitoring, and use the money saved to invest in supporting people and families with PBs in legal/HR/payroll issues, and in supporting people to really plan for their futures, individually and collectively. People are in the best position to invest their personal budget wisely and efficiently, without waste, and again will invest locally.
  9. Invest in social workers who have the time to get to know people properly, and who respect people in the decisions they make about their lives.

I’m sure there is much more to be said and I’ve ignored many vital things. My point is that from a local authority point of view these forms of investment are highly cost-effective and likely to form a virtuous circle, and help to achieve the vibrant, inclusive local communities local authorities are aiming for while supporting local business and supporting people with learning disabilities to live more active, fulfilled and healthier lives.

Which is why I find it weird that so many local authorities are throwing public money at large, quasi-institutional residential services for people with learning disabilities. Local authorities are paying for layers of bureaucracy, profits that are not transparent and are siphoned out of the locality as part of big companies’ profits, and buildings that do not improve or contribute to general housing or amenities in the locality. They are paying for a low waged, transient workforce. They are paying for people to be shut away, such that local businesses and enterprises see very little of the public money sunk into these places and don’t see the benefit of people with learning disabilities as employees and customers. Over time, local communities become less vibrant, less connected, less cohesive. And inactive, isolated people with learning disabilities are more likely to become seriously ill and experience abuse and neglect. A vicious and self-defeating cycle.

What are local authorities waiting for? Be smart – invest in people with learning disabilities.

With thanks/apologies to @neilmcrowther for unwittingly triggering this line of thought.

Tuesday, 15 August 2017

Still the unoffered chair? IAPT services and people with learning disabilities

Over 20 years ago, Mike Bender in a short article called "The unoffered chair: the history of therapeutic disdain towards people with a learning difficulty" documented the almost complete lack of attention paid by professionals towards developing and offering psychological therapies (broadly defined) that would be useful for people with learning disabilities. Then, the idea that people with learning disabilities could experience the same kinds of distress as everyone else, and that alternatives to heavy-duty drugs and restraint were both possible and necessary, seemed radical (and now???).

Since then, there has been more work around psychological therapies with people with learning disabilities experiencing various forms of distress, although as recent NICE guidelines reported there is a real inequality in the evidence available concerning how good a range of psychological therapies are for people with learning disabilities. 

There has also been a move towards trying to 'mainstream' support for people with learning disabilities, including support for people with learning disabilities in distress. For people with depression or anxiety, and increasingly other forms of distress as well, the main game in town in England is Improving Access to Psychological Therapies (IAPT). IAPT services have been established across England, and are designed to provide quick access to a (fairly narrow) range of psychological therapies for people in distress who don't need more intensive mental health service support. It is a huge enterprise, with approaching 1.5 million people referred to IAPT services every year. What IAPT services offer is pretty rigidly specified (the original rationale for IAPT was economic, in that in theory it would cost-effectively return people to work more swiftly) and a lot of standardised information is collected nationally.

Given that IAPT is supposed to be available to everyone, including people with learning disabilities (those pesky reasonable adjustments), how accessible are IAPT services to people with learning disabilities and do they help people with their distress? Historically, the picture has been very patchy, with the Foundation for People with Learning Disabilities working with IAPT nationally to try and help them improve their game.

NHS Digital produces a comprehensive range of monthly statistics about IAPT services, which they also summarise into quarterly chunks summarising three months' worth of information. I thought I'd take a quick look at the most recent quarterly information (for January to March 2017) and see if it could tell us anything about the accessibility and effectiveness of IAPT services for people with learning disabilities. 

The statistics can be broken down according to 'disability', which includes a category of 'Memory or ability to concentrate, learn or understand (Learning Disability)'. From January to March 2017 4,571 referrals (not necessarily referred people, as a person could have been referred more than once in the time period) were recorded under this Learning Disability category, which was 1.2% of the total number of people (374,553 people) referred to IAPT services during this time. Research suggests that overall around 2% to 2.5% of people are people with learning disabilities, so the 1.2% referral rate is around half the figure you might expect if people with learning disabilities were being referred to IAPT services at the same rate as everyone else. However, the rate of people recorded as having learning disabilities being referred to IAPT is much higher than the rates of adults with learning disabilities known to social services or registered with GPs (around 0.4% of the adult population). 

These statistics are reliant on IAPT services' recording of learning disability; some IAPT services may not be very good at asking relevant questions, and/or some people who acquired a learning disability label in education may not feel the need to re-acquire the label when accessing an IAPT service. So it is possible that there are more people with learning disabilities within IAPT services than the statistics are recording. In terms of accessibility, it's hard from these statistics to know if people with learning disabilities are getting equal access to IAPT services or not. However, it is clear that substantial numbers of people who IAPT record as having a learning disability are being referred to IAPT services, meaning that IAPT services need to ensure that working effectively with people with learning disabilities is part of their routine practice.

What happens to people with learning disabilities once they are referred to IAPT services? The graph below compares what happens to people with learning disabilities with what happens to everyone referred to IAPT, and generally shows marginally poorer journeys for people with learning disabilities. After being referred to IAPT, around two-thirds of people with learning disabilities (67.2%) actually start IAPT treatment, compared to almost three quarters of people generally (73.2%). The vast majority of people with learning disabilities (89.1%) and people in general (92.9%) start IAPT therapy within 6 weeks of being referred.  

Getting on for two fifths of people with learning disabilities (39.3%) and people generally (37.5%) who enter IAPT treatment only get as far as having one treatment session. Finally, nearly one fifth of people with learning disabilities (18.3%) and people generally (18.2%) who complete their course of IAPT therapy are reported to have 'reliably deteriorated' or not 'reliably changed' on the standard mental health/distress measured used by IAPT.

The second graph below compares people with learning disabilities and people generally on recovery rates achieved during IAPT therapy. Here there are bigger gaps between people with learning disabilities and people generally. Two fifths of people with learning disabilities (40%) had 'moved to recovery' on standard mental health/distress measures, compared to half of people generally (51%). Less than two fifths of people with learning disabilities (37.9%) had achieved a 'reliable recovery' compared to almost half of people generally (48.6%).

These statistics are only a snapshot of three months of referrals to IAPT, and my interpretation of them is likely to be pretty superficial. What do I make of them? 

First, it's good to see that people with learning disabilities are being identified (however imperfectly) within IAPT services, and that NHS Digital makes it possible for the public to investigate possible inequalities in IAPT services. 

Second, it's hard to know whether people with learning disabilities in distress experience inequities in getting referred to IAPT services (it's important to say here that people can refer themselves to IAPT without waiting for someone else to do so). However, in the course of a year substantial numbers of people with learning disabilities (maybe approaching 20,000 people a year?) are being referred to IAPT, so IAPT services across the country need to be routinely ready and not assume that people with learning disabilities are an ignorable niche.

Third, there are some signs that there are marginal inequalities experienced by people with learning disabilities at every step of IAPT services, ending up in quite substantial differences in recovery rates. IAPT services can clearly be doing more to make their services welcoming, accessible and effective for people with learning disabilities in distress. I find it encouraging, though, that approaching two fifths of people with learning disabilities in distress get some kind of demonstrable benefit from IAPT therapies, showing that some mainstream mental health services can adjust themselves to work well for many people with learning disabilities. More please.

Friday, 7 July 2017

Anarchy in the UK

It was the announcements of proposals for big new inpatient units in Wales, run by private companies, that got me thinking (thinking too late, as usual). While I usually parochially focus on Transforming Care in England, people and their families know to their cost that the ‘market’ in inpatient services is UK-wide, with boundaries between England, Wales, Scotland and Northern Ireland meaning very little to those deciding where people are to be ‘placed’ (I can only think that things like vases of flowers are ‘placed’, not people, things that cannot of course move of their own accord).

[from GIPHY]

Why am I belatedly thinking this is important? A number of things. Devolution has accelerated differences between the four parts of the UK, which presents opportunities for big private companies looking for the best options for the biggest profits. The CQC in England getting a bit tougher on registering (or re-registering) inpatient units? Locate your inpatient units somewhere beyond their reach – Wales, Scotland and Northern Ireland all have their own systems for regulation. Where are potential convertible properties at low prices, or places for new-build that will have the local council falling over themselves to give planning permission? In which part of the UK will ‘step down’ or ‘forensic rehab’ units, or hospitals reregistered as care homes, be just below the notice of pesky national policies to make them lucrative long-term business opportunities?

And for a nerd like myself, these differences make it easier to hide just where people are and where they have come from – again, fertile ground for organisations running inpatient services to operate within (although this is primarily about private sector companies running inpatient services, NHS or equivalent public sector organisations such as NHS Trusts can and do adopt some similar strategies to ‘fill their beds’).

All four parts of the UK have, in the recent past, conducted regular census surveys of people with learning disabilities (and sometimes and/or autism) in inpatient services, or of people in learning disability inpatient services (not quite the same thing). All four parts of the UK do this differently, and as far as I can tell this means that we cannot draw up definitive information about how many people with learning disabilities or autistic people are in ‘specialist’ units in the UK, and where they have come from in terms of their homes and families. I’ll go through each of them in turn.

In England, NHS Digital conducted a Learning Disability Inpatient Census on 30th September for three years: 2013, 2014 and 2015. It has not been continued. This reported on the number of people in learning disability/autism specialist inpatient services which were located in England. For 2015, this census reported that there were 3,000 people in these units, a rate of 5.5 people per 100,000 total population in England. Of these 3,000 people, 2,940 people were from ‘home’ districts in England and 60 people were in English units but their homes were in other parts of the UK. What this census cannot tell us is how many people with learning disabilities or autistic people have their homes in England but have been ‘placed’ in inpatient units outside England, such as Wales or Scotland. The NHS Digital dataset based on returns from English health service commissioners (Assuring Transformation) I think should have this information, but it is not currently publicly reported.
Wales conducts an annual census on 31st March on the number of people with learning disabilities in NHS mental health and learning disability inpatient services located in Wales. In 2016, there were 117 people with learning disabilities in NHS units in Wales, a rate of 3.8 people per 100,000 total population in Wales. This rate is much lower in England. I cannot work out if these numbers include people ‘placed’ in NHS inpatient services in Wales from outside of Wales. However, these statistics exclude Welsh people with learning disabilities who are either in private sector inpatient services (whether in Wales or elsewhere) or Welsh people who are in NHS inpatient services in England. A 2015 inspection report of services for people with learning disabilities in Wales reported that an additional 53 Welsh people with learning disabilities were in these categories. This would make the overall rate of Welsh people with learning disabilities in inpatient service 5.9 people per 100,000 total population in Wales.

Northern Ireland conducts an annual Mental Illness and Learning Disability census on 17th February, including people with learning disabilities in inpatient services run by Health and Social Care Boards (health and social are integrated in Northern Ireland). It also includes people normally resident in the inpatient unit but on home leave on the date of the census. In 2016, there were 125 people with learning disabilities in Health & Social Care inpatient services in Northern Ireland, a rate of 6.8 people per 100,000 total population in Northern Ireland. This is a higher rate than other parts of the UK, but unlike other parts of the UK the number of people in inpatient services in Northern Ireland has been dropping rapidly (it was 315 people in 2011), perhaps representing the tail-end of ‘regular’ institutional closure? However, the Northern Ireland figures do not include anyone with learning disabilities in independent sector inpatient services (either in Northern Ireland or elsewhere in the UK) or anyone from Northern Ireland in NHS inpatient services in England, Scotland or Wales.

Scotland has been conducting a Mental Health and Learning Disability Inpatient Bed Census every two years on 29th October, with the most recent one in 2016. This includes people with learning disabilities in NHS services in Scotland, and people in inpatient services outwith (love that word) Scottish NHS services, including people in independent sector inpatient services in and outside Scotland and people in NHS inpatient services outside Scotland. In 2016 there were 291 people with learning disabilities and/or autistic people in NHS Scotland inpatient services, plus another 33 people in inpatient services outwith NHS Scotland, a rate of 6.1 people per 100,000 total population. This rate looks higher than some other parts of the UK, but the statistics include people in a wider range of inpatient services than statistics for other parts of the UK.

The upshot off all this nerdery is that I don’t think we can work out how many people with learning disabilities or autistic people are in specialist and mental health inpatient services across the UK. The roughly 3,500 people mentioned in these inpatient censuses across the UK are likely to be a substantial underestimate, particularly as the statistics often miss out people sent to independent sector inpatient services in another part of the UK. The statistics may not include all autistic people in these types of units. They may not also include the plethora of ‘step down’, ‘forensic rehab’, reregistered from hospital to care home, types of places that again may be growing largely invisibly. They certainly don’t include people with learning disabilities and autistic people in general mental health inpatient services – English data from NHS Digital suggest that this involves at least an extra 1,000 people at any one time. The statistics also don’t include children and young people in varieties of residential special school/specialist residential colleges designed for the challenging of behaviour.

Across the UK, if we include all these types of places that people with learning disabilities and autistic people may be in, we’re talking maybe 6,000 people of all ages at any one time? And over the course of a calendar year, how many people will have been in one of these places for at least some time during the year? That’s a lot of market expansion opportunity. It may be relevant to note at this point that in England 95% of the 30,500 residential care places for adults with learning disabilities are run by the independent sector, a sector that has been in decline but possibly may not be any longer.

One last thought – as John Lish pointed out on twitter, all these expansions by private companies are based on the assumption that commissioners are going to continue to buy their services (this blogpost I wrote over three years ago depressingly shows how little my thinking has changed on the limitations of commissioners when it comes to inpatient services). In England, Transforming Care hasn’t affected this assumption in any way – if anything, it may have wittingly or unwittingly accelerated it. Looking at other parts of the UK, it looks like not having a commissioner/provider split, having more state-run service provision, or having integrated health and social care services, doesn’t necessarily make a decisive difference either.

Whether public money is tight or not, this is a shocking waste of public money resulting in a shocking waste of people’s lives. Take any local area in England. Put people and families in charge of how that public money is spent – really in charge. Watch the light being shone on these dodgy practices and watch them track down exactly how much money is being spent, where, on what. Watch people and families relentlessly root out waste and shoddy practice. Watch the encouragement of small, local committed groups who actively want to invest in the potential of people with learning disabilities or autistic people to live the fulfilling life they want to. Watch people blossom when they can begin to imagine a future for themselves, and have the means and support to enact that future. [note: good lawyers will be needed]. Do I want my tax payers’ money (the usual phrase here would be hard-earned, but that might be a bit of a stretch in my case) chucked down the throat of an offshore venture capital company to keep people in chains, or invested in people with love and commitment?

Ha – stacked the deck there! Have a good weekend.

Some of the data and analysis here is based on this paper written for the Tizard Learning Disability Review, but I’ve updated some data where possible and focused on some different issues than in the paper.

Thursday, 18 May 2017

The new restraint: old chains in new guises

In my last blogpost I talked about what the research evidence does and doesn’t say about the lives of people with learning disabilities living in different kinds of places. I also talked about how the research evidence hasn’t kept pace with the corporatized world of speculative 48-bed ‘supported living’ establishments and other such ‘developments’.

[Odilon Redon, 1916, White vase with flowers]

I’ve been hearing quite a lot about these sorts of ‘supported living’ arrangements, what people’s lives are like within them, and what is being done to people to cut costs in the disingenuous names of ‘improving people’s quality of life’ and ‘reducing their dependence’. I’ve also been thinking about how Hillingdon Council have assessed Steven Neary as being subject to a ‘deprivation of liberty’ because he is consistently supported to go about his daily life.

Historically, one very powerful prism that has been used to understand what services are doing to people is institutionalisation. This is derived from the work of sociologist Erving Goffman in the USA, who in his 1961 book Asylums defined a total institution as “A place of residence and work where a large number of like-situated individuals, cut off from wider society for an appreciable period of time, together lead an enclosed, formally administered round of life”. Features of institutional routines include a complete breakdown of usual distinctions between work, play and sleep, so that all these things happen under one roof under a single authority; block treatment of residents; routines which act to depersonalise residents; rigid institutional routines; and maintaining a social distance between residents and staff.

In the UK in the 1980s and the 1990s quite a lot of research begun by Norma Raynes and colleagues investigated the extent to which people in long-stay institutions, and various community-based types of housing for people with learning disabilities, were subject to these institutional routines. Although long-stay institutions were always (unsurprisingly) institutional, and smaller, community-based housing services were on average less institutional, being in a small supported living service did not guarantee that your life wouldn’t be constrained by the kind of institutional routines listed above.

Looking at the circumstances people are in now, I think there’s a lot to still be taken from the institutionalisation way of thinking about things, but that applying it wholesale allows service providers and commissioners to wheedle their way out of the consequences of what they’re doing to people (‘Of course we don’t make everyone have a bath at the same time – people have choice about that’ etc etc).

Instead I’d like to propose that what we’re talking about here are forms of restraint. We know people with learning disabilities (both inside and outside inpatient units) can be subject to mechanical restraint (being placed in clothing, chairs etc that restrict people’s movement), physical restraint (being restrained by other people), seclusion (being locked in a room on your own), and chemical restraint (being prescribed unnecessary antipsychotics as a method of sedation). I think we can also talk about restraints on freedom. These might not be acknowledged as such, but these restraints can be seen in their impact on people’s lives. These restraints on freedom took certain forms in big institutional services, but very similar restraints on freedom are cropping up in new guises for people with learning disabilities today.

For example, Goffman talked about people in institutions living their lives under one authority. If a person with learning disabilities is in a ‘supported living’ service where the housing and support provider organisations happen to be the same or are closely linked, in practice this person is living their life under one authority. How easy would it be for this person to move house, or sack the organisation supporting them to find someone better? And if this person doesn’t have a job (highly likely), has very little money to spend, and gets very little support to do anything during the day that they want to do, these restraints add up to something possibly worse in some ways than an institution – from work, play and sleep under one authority to no work and precious little play, leaving a person effectively trapped in their home with nothing to do. A restraint on freedom.

Goffman also talked about institutions involving large numbers of like-situated individuals under one roof. These aren’t people choosing to live together under one roof because of shared liking, interests or ideals. They are people made to live under one roof due to decisions made by an external authority, on the basis of a bureaucratically defined ‘need’. Again, a 48-bedded ‘supported living’ complex, no matter how bijou, is doing exactly this, imposing severe restraints on people’s freedom to determine where they live and who they live with in living spaces that are private. However, these restraints can also apply in much smaller places too, if people have no say in which neighbourhood, village, town or city they live in, the style of their home, and whether they want to share with anyone, on what terms, and who the anyone is.

In terms of restraints on freedom described as institutional routines when people lived in big institutions, no doubt there would be strenuous objections from service providers and commissioners if I were to suggest that people with learning disabilities are subject to block treatment and rigid routines, although initiatives like the excellent Big Bed Time Audit done in Hertfordshire and Calderdale show that block treatment is alive and kicking in services for people with learning disabilities (soon to be published, but some tweets on it can be found here).

But what if people with learning disabilities in a supported living complex all have to be in their flatlets/rooms at a particular time at night? What if everyone supported by a particular service provider, across many different houses, all have to do the same 'work experience'? What if everyone with learning disabilities has to use their 'personal budget' in the form of a pre-payment card, only usable with a restricted set of 'approved' services? These are restraints on freedom in the form of block treatment, even if they are distributed across all the services provided by a particular organisation or across everyone living in a particular local authority.

The same is the case with rigidity of routines. What if people only get any support to go out and do stuff at fixed hours and days of the week, meaning that people have to leave a gig at 9pm (see Stay Up Late’s recent survey on this), or they don’t get to see a film at the cinema they want to because a support worker isn’t available when the film’s on? What if people get a home visit involving personal care, at a particular time, that isn’t long enough to get people feeling like they’re ready for action? For me, these are restraints on freedom in the form of being subject to rigid routines imposed by others for bureaucratic convenience, in new forms that are cloaked and officially deniable.

Perhaps most frightening to me is the way that services are increasingly being set up in ways that depersonalise people with learning disabilities and set up an ever increasing social distance between people with learning disabilities and others supposed to be there to support them. The role of people as supporters is being systematically eroded and being replaced by various forms of remote surveillance in the names of assistive technology or telecare.

Look at the ‘Just Checking’ website for one example of such technology being used in an increasing number of ‘supported housing’ services across England – there are many others too. Sleep-in staff are being replaced by ‘Just Checking’ technology, which as far as I can tell records whether people are opening or closing doors at night or are getting out of bed, with one Just Checking member of staff remotely keeping an eye on all this information from multiple houses. Quite what pattern of door opening and closing would merit an intervention, what this intervention would be, and what would happen if two people in different houses opened their doors inappropriately simultaneously, is unclear. As far as I can tell, I can’t see any evidence presented in the case studies on the website that people with learning disabilities prefer Just Checking to being able to talk to someone, or that it improves the lives of people with learning disabilities in any tangible way. There is lots of detailed evidence on cost savings, however. The front page of the site sets up the extreme depersonalisation and social distance involved – your options are ‘For A Loved One’ or ‘For Care Professionals’ – a ‘For You’ option doesn’t exist.

And how does a person with learning disabilities ask for help, or have someone to chat to if they’re worried about something? How do people have secure, ongoing relationships with people supporting them, to find out shared interests, do things together, grow and develop as people? To me this increasing social distance and depersonalisation are severe restraints on people’s lives, by not providing the human contact and respect that everyone needs to make the most of their lives.

Taking these together, I was thinking about Mark and Steven Neary, and how Hillingdon has decided that Steven’s excellent support to live the life he wants and to support him in growing and developing as a person constitutes a deprivation of liberty. Like Mark, I think it’s the exact opposite. Taking away Steven’s home, forcing him into some ‘supported living’ service with people he doesn’t know, taking away the people who know and care about him, would be subjecting him to severe restraints on his freedom.

Wherever people are living, I think a crucial test for any organisation commissioning or providing support is the extent to which their practices are acting as restraints on people’s freedom, in the ways I've tried to describe above and in other ways too. These restraints need to be broken just as much as other forms of restraint. If people were not being subject to such restraints, you would expect to see variation and diversity in how a population of people with learning disabilities are living their lives, as they become the authors of their lives rather than having the book of their lives written by someone else. Sounds good to me.

Sunday, 14 May 2017

The ghost of evidence past, present and future - Stinky Pete speaks

I’m worrying about the increasing rate at which people contact me to ask if there is any evidence that small, community-based housing is associated with better lives for people with learning disabilities compared to care homes and institutions. My first realisation is that I’m now into the ranks of the academic Stinky Pete old-timers, whose fading memories are dredged for ancient scrolls beyond the reach of a SIRI request (“I did research on this 20 years ago, young grasshopper…”).

My bigger worry, however, is that this generational forgetting leaves organisations who should really know this stuff defenceless against waves of attacks on the very idea of independent living (in a disability rights sense) coming from some ‘service providers’ building 48-person ‘supported living units’ (see Mark Neary’s recent blogpost about this ) and local authorities looking for reasons to warehouse people on ground of economies of scale (see this NDTi blog from Rob Greig ).
So, a quick recap on what the evidence says. There has been loads of research about this across the UK and other countries, most of it linked to the closure of the big long-stay hospitals but some of it looking at different ways of supporting people with learning disabilities beyond long-stay hospitals. Most of this research, in the UK at least, is at least 10 years old.

The table below (from a systematic review by Walsh and colleagues, published in 2010) summarises what the research evidence from 67 research studies said at the time (I don’t think it would be much different now), either from studies that had followed people out of long-stay institutions (the ‘deinstitutionalization studies’) or from studies that had compared people living in different types of community-based housing (the ‘postdeinstitutionalization’ studies – never use one word when one REALLY LONG word will do instead).

There were/are a lot of gaps in the research evidence, but what is obvious from this table is that institutions are never, ever better in any aspect of people’s lives than community-based alternatives (the mortality evidence comes from one set of Californian studies where the methods used to derive the conclusions have been hotly contested). In a few areas of people’s lives (‘challenging behaviours’, for example), community-based housing support services are no better than long-stay institutions. But in most areas of people’s lives (like people using the skills they have, more choice over aspects of their own lives, doing more stuff inside and outside the person’s home, and people being more socially connected), life outside long-stay institutions is better.

Also, for many (but not all) aspects of people’s lives (like exercising more choice, more social connections, doing more outside the home, possibly more physical exercise), smaller supported living houses are better than larger residential care homes or group homes.

So far, so straightforward. But there a few things to remember. In the research evidence reviewed here, lots of important stuff (like people’s disposable income, or what people think of their neighbourhoods) was hardly measured. Using long-stay institutions as a basis for comparison also sets the bar very low – it doesn’t take much to show someone’s life is better than in an institution, although that person’s life may be way short of what they, you or I would consider to be a decent quality of life. 

A third thing is variation. There was very little variation across different long-stay institutions – people’s lives on the measures used in these studies were consistently not good (I’m trying to be measured here). In residential care homes and supported living services, however, there was a lot of variation in people’s lives across different homes supposed to be of a similar ‘type’, such that for some people life in a care home or supported living would be indistinguishable from life in a long-stay institution. Why do some people in similar-looking places have better lives than others? 
Unsurprisingly the biggest factor is how well people are supported to get involved, active, and do the things they want to do. It also seems that people who need more support to do stuff or people with ‘challenging behaviour’ are less likely to get support that enables them to have a really good life.

Is any of this relevant to where we’re at now? Well, yes and no. Although I can’t believe this needs to be restated, long-stay institutions are really bad places for people to be. Overall, it’s also the case that smaller is better. But living in an ordinary house is not enough – people need others to support them in ways that people actually find useful, rather than obstructive. To me, ‘specialist housing’, with rounded edges or whatever wannabe service providers are claiming is necessary for people with learning disabilities, really seem to be expensive and unnecessary – more decent accessible housing open to anyone where people with learning disabilities have legal rights as tenants or owners is much more efficient in all sorts of ways.

There are also an awful lot of gaps. When this research was done, the very idea of a 48-bed ‘supported living’ unit would have been seen as an oxymoron. As an excellent series of recent NDTi reports has shown (see for the first one), old ways of classifying ‘service types’ are becoming in some senses meaningless, certainly to the people living in them. Is a 48-bed supported living unit an institution, an ensuite residential care home, supported living, an intentional community, or what? The only way to find this out is to find out what people’s lives are like, and how people are being supported to live their lives vs what barriers/restraints are being imposed on people that get in the way.

Research in the UK about this, with a couple of honourable exceptions, has severely dwindled and not kept pace with how services are changing. Perhaps even worse, why aren’t local authority commissioners collecting or demanding this kind of information before they start making disingenuous cases for warehousing people? Why aren’t more big service providers collecting proper information about the impact of their own services on people’s lives and how to improve what they do? These people claim to be specialists – well, show your evidence or shut up with your disingenuous quality of life talk as a cloak for disinvesting from people’s futures.


Walsh PN, Emerson E, Lobb C, Hatton C, Bradley V, Schalock RL, Moseley C (2010). Supported accommodation for people with intellectual disabilities and quality of life: an overview. Journal of Policy & Practice in Intellectual Disabilities, 7(2), 137-142.

Friday, 14 April 2017

It takes a nation of millions...

A long time ago, after yet another gloomy parade of statistics, someone (I think it was Martin Coyle? Apologies if it wasn’t you Martin, or even if it was, for dragging you into this) asked me if I was in any hopeful about the future, and to write a blog about it. Well, after a long time and a lot of gloom in the middle, here it is. My grounds for hope are quite straightforward. It’s seeing and working with people with learning disabilities who are, in all sorts of different ways, working for freedom, for themselves, for other people with learning disabilities, and in common cause with others.

People campaigning and people going down the insider route. People who challenge oppression wherever they see it, persuasively and without bitterness. People with energy and resilience to keep going in hard times. People doing the media thing with force, clarity and charm. People who come up with creative solutions when sclerotic bureaucracies are stuck. People with persistence and impressive patience in the face of organisations that repeat the same offensive crap over and over again. People who can transform a conversation in a room without saying a word. People who are honest, trustworthy and reliable. Incredibly persuasive people who bring all lots of reluctant organisations with them. People who give a huge amount of time, commitment and emotional energy while being poorly paid or not paid at all. And people who have a good time while they’re doing it. 

If you want to find effective organisations working to achieve social change in the face of sometimes extreme pressure, organisations of people with learning disabilities are an excellent place to look.

For us professional fellow travellers, and for me personally, I’ve been very slow to realise what my job should really be – to support this remarkable coalition of people in ways and on terms not determined by me, which includes the possibility of being binned if I’m getting in the way.

In the words of Public Enemy, it’s taking a nation of millions to hold people with learning disabilities back, and you know what? In the end, it won’t work. People with learning disabilities will move beyond co-production to controlling the means of production. There’s my hope (believe the hype).