The disappeared

Official statistics for social care in England in 2014/15 have recently been released (see http://www.hscic.gov.uk/catalogue/PUB18663 ). As with many other official statistics there have been major changes to the data collected in 2014/15, making last year something of a year zero and comparisons to previous years difficult. Nevertheless, in a series of blogposts over the next week or two, I want to use these and other statistics to explore what’s happening in social care (and in service support more generally) for people with learning disabilities in England.

Changes in the data collected make errors of interpretation even more likely than usual, so please do say if I’ve got anything horribly or slightly wrong and I’ll update the post accordingly.

In this post, I want to talk about the apparent disappearance of people with learning disabilities (particularly people given the label of mild or moderate learning disabilities) from the official gaze of statistics and services designed to support people with learning disabilities.

The ‘transition cliff’ in service identification of people with learning disabilities as they move from services for children to services for adults is well-known and long-established. The graph below, based on data from 2010 (Emerson & Glover, 2012), shows how many people out of every 1,000 people generally are recognised as a person with learning disabilities by schools (for children) or GPs (for adults), across different ages.

For children aged 10-15 years in 2010, around 5 children out of every 1,000 were identified within education services as a child with ‘severe learning difficulty’ or ‘profound and multiple learning difficulty’. A much bigger number, from 40-50 children per 1,000, were identified as a child with ‘moderate learning difficulty’. However, by the time people are in their early twenties, the number of adults identified as a person with learning disabilities (of any ‘level’) on GP registers is at around 5 people per 1,000; around the same number as children with ‘severe’ or ‘profound & multiple’ learning difficulties. What’s happened to all the adults formerly known as children with ‘moderate learning difficulty’ – our best guess is something around 700,000 people in England? They have simply vanished from the sight of health or social services as a person with learning disabilities. While many people in this group might view this as an escape from an unhelpful sticky label, others might see it as an eviction from much-needed support.

How many adults with learning disabilities are likely to need support from social services over the next 20 years? Taking as a starting point the number of adults with learning disabilities known to social services in 2012 (i.e. already missing out the ‘hidden majority’ of adults with learning disabilities), we (Emerson, Robertson, Coles & Hatton, 2012) made population projections of the number of adults likely to need social services support up to 2023, depending on how strict social services were going to be about ‘eligibility’ for services. As the graph below shows, even if councils only offer support to people with ‘critical’ or ‘substantial’ needs, the number of adults with learning disabilities needing support is projected to increase by around 2% a year – which by 2023 adds up an increase of around 50% in the number of adults needing social services support from 2012. 

So far, I hope I’ve established that a huge number of adults identified as having learning disabilities in childhood do not carry this identification (and eligibility for support as a person with learning disabilities) into adulthood. I’ve also tried to show that even using strict eligibility criteria, the number of adults with learning disabilities likely to need support from social services is going to increase hugely in the next 20 years.

What do recent trends tell us about the number of people with learning disabilities being identified within education and social services? Is the number of people increasing in line with increasing numbers of children on school rolls generally, and in line with projections of increasing numbers of adults with learning disabilities needing social services support? Although changes in the way statistics are collected in 2014/15 make this judgement difficult, my initial answer is no. In fact, and particularly for people with ‘mild/moderate’ learning disabilities, the opposite is happening – people are being ‘disappeared’.

The graph below shows Department for Education statistics on the number of children identified as having a ‘moderate’, ‘severe’ or ‘profound and multiple’ learning difficulty/disability at the level of having a statement of special educational needs (up to 2014) or having an Education Health and Care Plan (2015) - see https://www.gov.uk/government/collections/statistics-special-educational-needs-sen. While the number of children with ‘severe’ and ‘profound and multiple’ learning difficulties has steadily increased from 2010 to 2015, as we would expect, the number of children with ‘moderate’ learning difficulty has dropped by nearly 20% over the same 5 years.

Is this because fewer children with ‘moderate’ learning difficulties are getting a statement/EHCP (which bring with them resources and responsibilities for services) and are being identified at the less resource-intensive level of ‘school action plus’ instead? The graph below says no; if anything the number of children with ‘moderate’ learning difficulties at school action plus level plummeted even faster from 2010 to 2014 – in 2015 the category of ‘school action plus’ was abolished from the publicly available statistics.

What about the number of adults with learning disabilities using social services – are social services in a time of severe financial pressure managing to keep pace with the number of adults with learning disabilities likely to require support? Again, the answer seems to be no. The next graph shows the total number of adults in England aged 18-64 years who were reported as being known to their council as a person with learning disabilities, up to 2013/14. In 2014/15, this definition changed in the official statistics to the number of adults with learning disabilities aged 18-64 years who were receiving long-term support from the council.

The graph shows that up to 2013/14 there were small year-on-year increases in the number of adults with learning disabilities aged 18-64 known to their council (up to 141,980 people in 2013/14) – not enough to keep pace with population projections, but still increasing. In 2014/15 there were 124,235 adults with learning disabilities aged 18-64 getting long-term social services support (there were a further 15,320 adults with learning disabilities aged 65 or over getting long-term support) – if these were equivalent figures this would be a 12% drop in one year. As an aside, it’s worth noting that in 2013/14 more adults (214,000 people; Glover, 2014) were identified by GPs as having a learning disability – data for 2014/15 are not available yet, but among other things it throws up a conundrum for health and social care integration bods.

Of course, the figures are not likely to be completely equivalent, although other information which I will discuss in a later blogpost strongly suggests to me that this drop cannot be completely accounted for by missing out from the official statistics people who were ‘known’ to councils but who were not receiving social services support. And even if this drop were due to people ‘known’ to services but not getting long-term support being left out of these statistics, their omission is ominous. In the world of official statistics and service support, it’s a short step from being uncounted to not officially existing.

What does it all mean? Well, to me there is a clear pattern that throughout education and adult social services, people who would formerly have been officially identified as a person with learning disabilities are being ‘disappeared’ from service recognition and responsibility. Obviously the people themselves do not cease to exist (and a label of learning disabilities may not always be the most helpful way to support someone). But I do wonder if we’re seeing another of the periodic big historical shifts in the population of people who officially ‘count’ as people with learning disabilities. This shouldn’t be surprising – changes in the population of people given the label of learning disabilities (or historical, pejorative near-equivalent labels) have historically tended to follow big social changes, and a time of designed austerity may be no different in this respect.

In Victorian times, rapid industrialisation and the movement of people to cities can be argued to have ‘created’ a whole new population of people coming into the category equivalent to ‘learning disability’. Edwardian moral panics, allied to a eugenic approach, led to the equivalent of ‘learning disability’ being used as a moral label as much as anything else, with another shift in the population caught in this label. The moral connotations of the label dropped away somewhat throughout the 20^th century, but the rise of the welfare state supported people with what would now be a label of ‘mild’ learning disability.

With the current reform/withdrawal/dismantling of the welfare state, perhaps we’re seeing an officially sanctioned (if implicit) shrinkage of who counts as a person with learning disabilities, with people with ‘mild’ learning disabilities being written out of the picture and state support reserved for ‘protecting’ the most ‘vulnerable’. My worry is that this retrenchment is consigning generations of people to a fight for survival in education, employment, housing, health and social contexts that are anything but conducive to a flourishing life.

Sources

Department for Education. Statistics: special educational needs (SEN) https://www.gov.uk/government/collections/statistics-special-educational-needs-sen 

Emerson E & Glover G (2012). The ‘transition cliff’ in the administrative prevalence of learning disabilities in England. Tizard Learning Disability Review, 17, 139-143.

Emerson E, Robertson J, Coles B & Hatton C (2012). The future need for social care services for adults with disabilities in England 2012-2030: Findings. NIHR School for Social Care Research  http://sscr.nihr.ac.uk/PDF/Findings/SSCRResearchFindings5.pdf

Glover G (2014). The uptake of learning disability health checks 2013 to 2014. London: Public Health England https://www.improvinghealthandlives.org.uk/publications/1239/The_Uptake_of_Learning_Disabilities_Health_Checks,_2013_to_2014

Health and Social Care Information Centre. Community Care Statistics, Social Services Activity, England 2014-15 http://www.hscic.gov.uk/catalogue/PUB18663