Disability benefits, people with learning disabilities and autistic people - 2023 update

This is a quick blogpost about disability benefit statistics, people with learning disabilities and autistic people, updating one from early 2021, with figures mainly up to November 2022. All these figures are obtained from the excellent DWP Stat-Xplore online tool. I’m going to talk about three disability benefits here:

1) Disability Living Allowance. The Disability Living Allowance (DLA) is a tax-free benefit for disabled people who need help with mobility or care costs. Disability Living Allowance (except for those born before 9 April 1948 and those aged under 16 at the time of application) is being replaced by Personal Independence Payments. The DLA consists of two components which are assessed and paid separately, a Care Award (paid at higher, middle and lower rates) and a Mobility Award (paid at higher and lower rates).

The Department for Work and Pensions (DWP) provides quarterly information on Disability Living Allowance (DLA), that can be disaggregated for adults with ‘learning difficulties’ in England. The DWP definition of ‘learning difficulties’ includes ‘learning difficulties’’ (an old generic code still used for pre-2008 cases before more detailed sub-categories were introduced), ‘Down’s syndrome’, ‘Fragile X syndrome’, ‘learning disability – Other/type not known’, ‘Autism’, ‘Asperger syndrome’, and ‘Retts disorder’². This definition is much broader than other government departments’ definitions of the population of people with learning disabilities.

2) Attendance Allowance (AA), which is paid to disabled people over the age of 65 to help with personal care. This can be paid at two rates to reflect the level of care required, and in the statistics uses the same broad definition of ‘learning difficulties’ as the DLA statistics.

3) Personal Independence Payment (PIP); a benefit for adults with sickness and/or disability replacing the DLA, but with some important differences. Information on the PIP is available on a monthly basis for adults with learning disabilities, under the category ‘Main Disabling Condition/Psychiatric Disorders/Learning Disability Global’, and for autistic people under the label ‘Main Disabling Condition/Psychiatric Disorders/Autistic Spectrum Disorders’.

In this blogpost I’m trying to get a sense of how many people with learning disabilities and autistic people (I’m assuming that the broader category of ‘learning difficulties’ is mainly these two groups of people) have been getting some form of disability benefit over time. To help with this, I’ve looked at four broad age groups: children and young people (age 0-15 for DLA); younger working age adults (age 16-44 for DLA and PIP); older working age adults (age 45-64 for DLA and PIP); and older adults (age 65+ for DLA, PIP and AA). The graphs include people getting payment for the benefit concerned, and are either people with ‘learning difficulties’ (DLA and AA) or, separately, people with learning disabilities and autistic people (PIP).

What do we find? The first graph shows how many children and young people with ‘learning difficulties’ received DLA (the only one of these three benefits where children and young people are eligible), from May 2012 to November 2022. The graph shows a steady increase in the number of children and young people with ‘learning difficulties’ getting DLA, with if anything a faster rate of increase in recent years, up to 267,436 people in November.

The next graph below shows information for younger working age adults (aged 16 to 44), from May 2012 to November 2022, and includes both the DLA and the introduction of the PIP. As more and more people transferred from DLA to PIP there was a rapid decrease in the number of younger working age adults with ‘learning difficulties’ getting the DLA up to May 2020, after which numbers have stayed fairly stable. There have been similar rises over time in the number of people with learning disabilities and autistic people getting a PIP, although May 2020 increases for people with learning disabilities have been smaller than for autistic people. The grey line in this graph shows the combined total of people getting one of these disability benefits. This shows some fluctuations over time, with year-on-year increases punctuated by a dip in 2016, no real change from 2018 to 2020, and a steady increase from 2020. By November 2022 258,777 younger working age adults with learning difficulties, learning disabilities, or autistic younger working age adults, were getting either DLA or PIP.

The third graph, below, has the same information for older working age adults with learning difficulties aged 45-64 (note that the vertical scale for this graph is different to the previous ones, as the overall numbers are smaller). This graph also shows a rapid decrease in the number of people getting DLA from 2012 to 2020, and staying fairly stable since. There was a sharp rise in the number of people with learning disabilities getting PIP up to 2020 but numbers have stayed fairly stable since, with relatively few but gradually increasing numbers of autistic people getting PIP. The combined total for this age group shows a much slower rate of increase for people getting either disability benefit, with fluctuations but no clear trend over time from 2018 onwards. By November 2022 61,327 older working age adults with learning difficulties, learning disabilities, or autistic older working age adults, were getting either DLA or PIP.

The final graph (again with a different vertical scale as the number of people is much smaller) has information on the number of older people with ‘learning difficulties’ (DLA, AA) or older people with learning disabilities or autistic people (PIP) getting one of these disability benefits. The number of older adults with learning difficulties getting AA is relatively small and has gradually declined from 2012 to 2022. As with older working age adults, sharp decreases in the number of older people getting DLA is accompanied by a sharp increase in the number of older adults with learning disabilities getting PIP but relatively few older autistic adults getting PIP. Overall, the number of older adults with learning difficulties, learning disabilities or autistic older adults getting one of these disability benefits has steadily increased from 2012 to 2022, but the rate of increase has slowed over time. By November 2022 20,269 older adults with learning difficulties, learning disabilities, or autistic older adults, were getting either DLA, AA or PIP.

Overall, the number of children and young people with 'learning difficulties' and the number of younger working age adults (particularly autistic adults, but also to a lesser extent younger adults with learning disabilities) getting disability benefits has continued to increase over time, even (after a blip) with the introduction of PIP. This is in contrast to older working age adults, when there have been no real increases in the number of people getting disability benefits for some years. For older people aged 65+, there was a very gradual but steady increase in the numbers of older people with learning disabilities and autistic people getting some form of disability benefit. For me, a few questions come out of this.

For the younger age groups, most of the increase in the number of people getting disability benefits may be largely being driven by an increase in the number of autistic people getting a disability benefit, which is not happening in the older age groups - is this perhaps a function of diagnostic services prioritising children and young people? 

Where people with learning disabilities are identifiable (all the adult age groups), from May 2020 onwards there has been little or no increase in the number of people with learning disabilities getting a disability benefit, which is particularly pronounced in the older working age adult group (45-64 years). Is this some combination of a continuing tightening of eligibility criteria for adults with learning disabilities, combined with the impact of the COVID-19 pandemic on the lives and deaths of middle-aged and older people with learning disabilities where 55-64 years was the peak age of death for people with learning disabilities?

Finally, if the increases that are evident among young groups of people (particularly autistic people) are sustained, and move through into older age groups, what will this do to the already tightening eligibility criteria for any sort of support for people?

Children with learning disabilities in schools in England: 2023 update

 

The Department for Education has released its latest annual statistics concerning children and young people identified within the English education system as children/young people with learning disabilities, recorded in an annual census of schools that takes place in January each year.

 

In the Special Educational Needs (SEN) statistics there are a number of mutually exclusive categories of SEN, three of which concern children with learning disabilities – Moderate Learning Difficulties (MLD), Severe Learning Difficulties (SLD) and Profound & Multiple Learning Difficulties (PMLD). There are a number of other SEN categories recorded within these statistics (Specific Learning Difficulties; Speech, language and communication needs; Social, emotional and mental health; Autistic spectrum disorder; Visual impairment; Hearing impairment; Multisensory impairment; Physical disability).

Within the annual census, a child can be classified as having a ‘primary need’ in one of these categories, and optionally classified as having an additional, ‘secondary need’ in another category. Most importantly in terms of how children are supported, children may have a special educational need that has been judged to require specific support in the form of an SEN statement (historically) or now an Education, Health and Care (EHC) plan. Beyond that, DfE statistics now only report an additional much larger number of children at a level of ‘SEN support’, which has no requirements to specifically support a child.

This blogpost simply updates a post I did last year on Department for Education (DfE) statistics, and goes through what some of these statistics say about the education of children and young people with learning disabilities, as identified within the education system. For a brilliant analysis of what these statistics say and what they mean for children with SEND generally, I highly recommend the Special Needs Jungle analysis, and I would urge you to read it.

The first question is simply – how many children and young people with learning disabilities are recorded in DfE statistics?

The first graph below shows the number of children with a statement/EHC plan with a ‘primary SEN need’ of MLD, SLD and PMLD, from 2010 to 2023 (apologies for the acronyms).

The graph shows that in 2023, over 74,000 children in England had a statement/EHC plan and were identified as children with learning disabilities. For children with MLD this was 32,898 children in 2023, with a large decrease of 31% from 2010 to 2018 but an increase of 16% from 2018 to 2023.

In 2023, there were 31,322 children with a statement/EHC plan and identified with a primary need of SLD, an increase in numbers of 24% from 2010 to 2021 but no increase from 2021 to 2023. Finally, in 2023 there were 10,120 children with a statement/EHC plan and identified with a primary need of PMLD, an increase of 16% from 2010 to 2018 but with fluctuating numbers since.

 

The second graph below shows the number of children with a ‘primary SEN need’ of MLD, SLD and PMLD at the level of SEN Support, from 2015 to 2023 (the reporting of statistics changed in 2015).

The graph shows that in 2023, over 190,000 children in England were identified as children with learning disabilities at the level of SEN Support. For children with MLD this was 189,375 children in 2023, with a large increase from 2015 to 2016 and a decrease from 2016 onwards.

In 2023, there were 2,277 children with a primary need of SLD at the level of SEN Support, with numbers fairly steady until 2020 but decreasing after then. Finally, in 2023 there were 824 children at the level of SEN Support with a primary need of PMLD, again with a recent decrease.

How many children with learning disabilities are being educated in mainstream schools or special schools? The graph below shows the number of children with a statement/EHC plan and primary needs of MLD, SLD and PMLD being educated in mainstream schools and special schools in England, from 2010 through to 2023. These figures don’t include potentially substantial but often not really known numbers of children not in school (including those being educated at home), or in places like residential special schools or specialist inpatient units.

The graph has quite a lot of stuff in it, so let’s take it bit by bit. The lilac lines are for children with MLD in mainstream schools (diamonds) and special schools (circles). As we know from earlier on the number of children with statements/EHC plans associated with MLD decreased from 2010 to 2018 but increased from 2018 to 2023. This graph shows that the number of children with a statement/EHC plan and a primary need of MLD in special schools declined steadily from 2010 to 2023; the number of children in mainstream schools declined rapidly from 2010 to 2017 but has been rapidly increasing since then.

For children with statements/EHC plans associated with SLD (the blue lines), the number of children with SLD in mainstream schools slightly decreased, with fluctuations, from 2010 to 2023, while the number of children with SLD in special schools rapidly increased up to 2022 but decreased slightly in 2023.

For children with a statement/EHC plan associated with PMLD (the purple lines), the numbers of children with PMLD in both mainstream and special schools has very gradually increased from 2010 to 2018 but has fluctuated since.

Another way of looking at this is to look at the percentage of children in mainstream vs special schools. The graph below shows this from 2010 to 2023 for children with a statement/EHC plan. As the graph shows, the percentage of children with a primary need of MLD and a statement/EHC plan in mainstream school dipped from just over 50% in 2010 to 43% in 2017, with the percentage returning to above 50% from 2021 onwards. For children with a statement/EHC plan and a primary need of SLD, the percentage of children in mainstream schools decreased from 17% in 2010 to less than 12% from 2018 onwards. For children with a statement/EHC plan and a primary need of PMLD, the percentage of children in mainstream school has remained fairly consistent around 14%-16%.

For children identified at the level of SEN Support (I haven’t included a graph on this), in 2023 almost all the children with a primary need of MLD (99.97%) and the vast majority of children with a primary need of SLD (92.3%) or PMLD (85.3%) were in mainstream schools.

Although it’s not an ideal marker of the financial circumstances of families, eligibility for free school meals is collected within DfE statistics. The graph below shows the proportion of children with statements/EHCPs associated with MLD, SLD and PMLD eligible for free school meals compared to the proportion of all children eligible for free school meals in 2023. For all children on the school roll, 23.8% of children in 2023 were eligible for free school meals. For children with a PMLD label the proportion of children eligible for free school meals is higher (36.2% for children with a statement/EHC plan), then higher again for children with an SLD label (43.5% for children with a statement/EHC plan), and highest for children with an MLD label (46.9% for children with a statement/EHC plan). It is worth mentioning that the proportion of children in all groups eligible for free school meals has increased in recent years.

A brief summary of the main points:

•  While the number of children identified as having special educational needs associated with severe learning difficulties or profound and multiple learning difficulties and needing statements or EHC plans have changed gradually over time, the number of children identified as having a special educational need associated with moderate learning difficulties has been plummeting but for the last five years has increased rapidly.
• There are slightly different trends for different groups of children with learning disabilities in terms of the proportion of children in mainstream vs special schools, but some earlier trends towards special education seem to be starting to reverse for children with MLD in the last few years. Less than 20% of children with an EHCP/statement and a label of SLD or PMLD are being educated in mainstream schools.
• Children with learning disabilities are much more likely to be eligible for free school meals than children generally.

Vanishing point: When will targets about the number of people with learning disabilities and autistic people in inpatient units be met?

 "Happiness is the target one only has to aim at in order to miss" John Cooper Clarke

There are myriad ways to bring to light the abject failure of governments and services to make good on their promises after the Panorama programme on Winterbourne View, over 12 years ago in 2011. The most important are direct accounts of people's experiences in these places, and how life can be so different with decent support. A small way to add to the picture is to examine, on the government's own terms, whether they are achieving what they say they've set out to do, most obviously in terms of the number of people still in inpatient units.

To keep this blogpost relatively short I won't go over again what has happened, and more especially what has failed to happen, since the Winterbourne View programme first aired. I will just focus on a set of targets that the government has set about the maximum number of children and adults there should be in inpatient units, by the end of March 2024. With less than a year to go until this deadline, how close is the government to meeting the targets they've set? 

The Building the Right Support for People with a Learning Disability and Autistic People Action Plan (2022) restates the NHS Long Term Plan target that “by March 2024 mental health inpatient provision for people with a learning disability and autistic people will reduce to less than half of 2015 levels (on a like for like basis and taking into account population growth). This means that for every 1 million adults, no more than 30 people with a learning disability and autistic people will be cared for in an inpatient unit. For children and young people, no more than 12 to 15 autistic children and young people and children and young people with a learning disability per 1 million children, will be cared for in an inpatient unit.” 

So, these targets (themselves a watering down of targets set in the original Building the Right Support in 2015, and puny in comparison to the aims of the government immediately after Winterbourne View) are expressed in a relatively straightforward way. What's actually happening?

 

Targets for children

The first graph below shows the number of children (aged less than 18 years) in inpatient units over time, from March 2015 to March 2023 for AT data, and from March 2018 to March 2022 for MHSDS data. 

Without going over this again at great length, AT stands for Assuring Transformation, a set of data collected by health service commissioners and reported every month, which tends to focus on people with learning disabilities and autistic people in 'specialist' inpatient units. MHSDS stands for the Mental Health Services DataSet, which is collected in real time by mental health service providers and reported monthly, which additionally to AT tends to include people with learning and autistic people in mainstream mental health inpatient units. Unfortunately, according to NHS Digital (now being absorbed into NHS England), many mental health service providers have been subjected to a 'recent' cyber attack, meaning that there has been no national MHSDS information since July 2022. You can find all this information here.

Number of children (aged less than 18 years) with learning disabilities and autistic children in inpatient services in England

 

The second graph below shows the rates per million population (aged less than 18 years) of children with learning disabilities and autistic children in inpatient services. ONS mid-year population estimates were used from 2015-2020 – more recent population estimates were calculated by applying the annual population growth rate from 2015 to 2020.

Rate per million children population of children with learning disabilities and autistic children in inpatient services – England

 

The first graph shows that according to the AT dataset, 170 children in March 2015 (when the BtRS Action Plan states that the number of children in inpatient services were undercounted) through to 240 children in March 2023 were in inpatient services. There is no clear trend over time, certainly not of reducing numbers of children in inpatient services. The second graph shows that in March 2023 the rate per million of children in inpatient services was 19.4, above the target for 2023/24 of 12-15. On current population figures, the number of children in inpatient services needs to reduce to around 185 children to be within the upper target band and under 150 children to be within the lower target band.

The MHSDS reports smaller numbers of children in inpatient services than AT, from 175 children in March 2018 to 180 children in March 2022. Given that MHSDS figures are usually higher than AT figures, this direction of discrepancy is unusual. It may be that children are less likely to have an already existing health system learning disability or autism flag, which would result in the MHSDS undercounting this group. Again there is no clear trend over time, with recent rates per million child population according to the MHSDS at the level of the upper target band.

 

Targets for adults

The third graph below shows the number of adults (aged 18+ years) in inpatient units over time, from March 2015 to March 2023 for AT data, and from March 2018 to March 2022 for MHSDS data.

Number of adults (aged 18+ years) with learning disabilities and autistic children in inpatient services in England

The fourth and final graph below shows the rates per million population (aged 18+ years) of adults with learning disabilities and autistic adults in inpatient services. 

Rate per million adult population of adults with learning disabilities and autistic adults in inpatient services – England

The third graph shows that, according to the AT dataset, 2,735 adults in March 2015 through to 1,890 adults in March 2023 were in inpatient services (although as the March 2023 data is relatively recent it is likely to be a slight underestimate). There is a downward trend over time, at an average compound rate of a 4.5% reduction per year. The fourth graph shows that in March 2023 the rate per million of adults in inpatient services was 41.7, above the target for 2023/24 of 30. On current population figures, the number of adults in inpatient services needs to reduce to 1,360 adults to be within the target band.

Applying the average reduction of 4.5% a year to the 1,890 adults in inpatient units in March 2023, it would take seven years (to March 2030) to reach the Building the Right Support target of 30 per million for March 2024. The downward trend has slowed over time: it was faster for 2015-19 (average compound rate -5.6% per year) than for 2019-2023 (average compound rate -3.6% per year). Applying the more recent -3.6% rate, it would take nine years (to March 2032) to reach the target for March 2024.  

The MHSDS reports higher numbers of adults in inpatient services than AT, with 3,395 adults with learning disabilities and autistic adults reported to be in inpatient services at the end of March 2022. There is no clear trend in numbers over time according to the MHSDS, with lower numbers in March 2020 and March 2021 likely to be related to the COVID-19 pandemic. The rate per million of adults in inpatient services according to the MHSDS was 75.4 in March 2022, very similar to the 75.6 reported in March 2018, compared to the Building the Right Support target of 30 per million. Because there is no existing downward trend over time, there is no future date at which the target rate would be met.

Even on the progressively less demanding terms that the government has set for itself, this is abject failure.

 

Not giving a shit

This is a quick post in response to the heartbreaking inquest for Sally Lewis, which George Julian has been assiduously reporting on in her blog https://www.georgejulian.co.uk/  Sally died as a result of the consequences of prolonged constipation, which despite Sally's 'support' service Dimensions knowing was an ongoing issue for her (and her GP flagging this up to people in the service), almost no-one working with Sally on a daily basis bothered to take seriously. The coroner reported a conclusion of gross neglect, which as those following George's reporting work will know is all too rare when it comes to the deaths of people with learning disabilities.

A final insult to the family is that they are having to crowdfund to pay for legal representation at Sally's inquest, while Dimensions have the funds to pay for lawyer after lawyer - if you have the resources, please consider a contribution https://www.crowdjustice.com/case/justiceforsally/  

In this post I'm just going to provide a short set of links to relevant evidence about constipation and people with learning disabilities, which has been around for some years now. 

1) At least one third of adults with learning disabilities are likely to be experiencing long-standing constipation at any one time, based on research directly assessing constipation.

2) In 2021/22, only 13.1% of people with learning disabilities in England registered with a GP were recorded by their GP to have had diagnosed or treated long-standing constipation in the previous five years - this figure has hardly changed from 2017/18 (13.3%).

3) Richard Handley died from the consequences of chronic constipation in 2012 - his inquest did not take place until 2018. He is by no means the only person with learning disabilities to have died as a result of constipation.

4) Amongst people with learning disabilities, long-standing constipation is one of the most common causes of being taken to hospital in an emergency.

5) Research has reported that over 25% of people with learning disabilities received a repeat prescription for laxatives in one year, compared to 0.1% of people without learning disabilities.

6) Beyond laxatives, there is little research on how to effectively help people with learning disabilities with long-standing constipation, and the evidence there is says that laxatives aren't always that helpful.

7) There is virtually nothing on how supported living and residential care services can support people with learning disabilities to live lives that reduce the chances of long-standing constipation, such as engaging in physical activity and eating healthier diets.

8) In 2019, NHS England identified constipation as a priority for action for people with learning disabilities following a LeDeR report identifying 12 people with learning disabilities dying as a result of constipation. Constipation leaflets were published in 2019, but have not been updated since.

9) In 2016, the Public Health England Learning Disabilities Observatory produced reasonable adjustments guidance (including an easy-read introduction) concerning constipation and people with learning disabilities. Funding for this Observatory stopped in 2019 and this guidance has not been updated since.

10) There are no NICE clinical guidelines relating to constipation and people with learning disabilities.

It's clear there's no reason for services not to know that constipation can be a serious problem for a lot of people with learning disabilities, and that the consequences of long-standing constipation can be fatal. It's also highly revealing that there's very little evidence about helping people live their lives in ways that would make constipation less likely, rather than prescribing laxatives. And it says something quite fundamental that nothing designed to seriously and practically address constipation amongst people with learning disabilities has been sustained. As a very wise colleague and friend said to me recently, how can you make people give a shit?

How many people with learning disabilities are prescribed mental health medications? Numbers from the 'Health and Care of People with Learning Disabilities' dataset

For over 30 years, it's been clear that huge numbers of people with learning disabilities in England (and in other places too) are prescribed (told by their doctor to take) what are sometimes called 'psychotropic' drugs - drugs that are prescribed to change something about a person's mental state. Typically, these are drugs prescribed for reasons of 'mental health', although they might also be prescribed to change a person's behaviour.

In England, NHS England and other organisations have been running the STOMP programme since 2016. STOMP stands for 'Stopping over medication of people with a learning disability, autism or both'. More recently STAMP ('Supporting Treatment and Appropriate Medication in Paediatrics) has been added by NHS England. Part of the aim of both these programmes is to reduce the number of people with learning disabilities and autistic people who are prescribed these drugs.

This blogpost will simply summarise some recent information about the percentages of people with learning disabilities being prescribed a range of mental health drugs. It mainly uses information from the 'Health and Care of People with Learning Disabilities' dataset, compiled by NHS Digital (now merged into a mega NHS England). Every year (going April to March), this takes information from GP information systems in England to produce statistics about the health and health treatment of people registered with a GP as a person with learning disabilities, often comparing them to the health and healthcare of people without learning disabilities. It's a brilliant source of information that isn't used as much as it should be. The interactive information tool is quite hard to get your head around but it does make it quite flexible - for many things you can look at how things are by age, sex, region and even more locally than that (to Sub Integrated Care Board level, it that floats your boat), and for most things you can look back over the last five years or so. The most recent information available covers April 2021 to March 2022, with updates usually released every year in December.

There are a few cautions to bear in mind though. The biggest one is that the information only covers about 6 in 10 people registered with a GP (59.2%). This is because the information is collected from the electronic information systems that GPs use, and one of the companies that own the electronic information system used by a lot of GPs wanted to charge too much money for it to be used. So coverage across different parts of the country is really patchy. The second caution is that there are likely to be many people with learning disabilities who are not registered as such with their GP - this is even more so for autistic people with registration with their GP as an autistic person (recognising that some people don't want to be registered with their GP in these ways). A third caution is that the extent to which this dataset includes people with learning disabilities in inpatient units really isn't clear. Finally, it's really important to remember that all this information is based on what health systems and GPs record, which is likely to have its own biases, particularly when it comes to people with learning disabilities.

'Severe mental illness' and antipsychotics

Antipsychotics are a set of drugs that are supposed to be prescribed for people with mental health issues with labels such as psychosis, which in GP-record world (along with some other mental health issues) are classed as 'severe mental illness'.

In 2021/22, 7.5% of people with learning disabilities were diagnosed with a 'severe mental illness', compared to 0.9% of people without learning disabilities. A clutch of research projects have shown that mental health issues such as psychosis might be more common amongst people with learning disabilities, but nowhere near to the extent that GPs are diagnosing severe mental illness, with the suspicion that some people with learning disabilities are getting this label to justify them being prescribed antipsychotic drugs for reasons essentially of attempted behavioural control. These percentages haven't changed much from 2017/18 (7.6% of people with learning disabilities; 0.9% of people without learning disabilities.

In terms of sex (the term used in the dataset), more girls/women (8.0% in 2021/22; up from 7.8% in 2017/18) than boys/men (7.2% in 2021/22, down from 7.4% in 2017/18) with learning disabilities had a severe mental illness diagnosis, while there was no difference amongst people without learning disabilities. In terms of age bands, from the age of 35-44 years onwards, more than 10% of people with learning disabilities had a diagnosis of severe mental illness, peaking at 15.8% of people aged 65-74.

Antipsychotics. Overall, in 2021/22 14.5% of people with learning disabilities were being prescribed antipsychotics, compared to 0.9% of people without learning disabilities. For people with learning disabilities, this was a reduction from 15.8% of people being prescribed antipsychotics in 2017/18 (there was no change over time for people without learning disabilities). 

Fewer girls/women with learning disabilities were being prescribed antipsychotics (13.9% in 2021/22, down from 14.4% in 2017/18) than boys/men with learning disabilities (15.0% in 2021/22, down from 16.2% in 2017/18). In terms of age bands, from the ages of 18-24 years onwards, more than 10% of people with learning disabilities in 2021/22 were being prescribed antipsychotics, peaking at 25.3% of people aged 65-74.

More recently, the Health and Care dataset has added information on people being prescribed antipsychotics when they don't have a diagnosis of severe mental illness or palliative care needs. In 2021/22, 9.1% of people with learning disabilities (7.8% of girls/women; 9.9% of boys/men) without a severe mental illness diagnosis were still getting prescribed antipsychotics, compared to 0.5% of people without learning disabilities or a severe mental illness diagnosis. 

Taking into account differences in the populations of people with and without learning disabilities in things like age and sex, in 2021/22 being prescribed antipsychotics was 15 times more common among people with learning disabilities than you would expect from general population prescribing rates; for those without a diagnosis of severe mental illness this rose to being 18 times more common.

Depression and anti-depressants

The Health and Care dataset has very similar information about GP diagnosis of depression and the prescribing of anti-depressants.

Overall, the percentage of people with and without learning disabilities diagnosed with depression has increased over time, at a slightly higher rate for people with learning disabilities (14.5% in 2021/22, up from 13.2% in 2017/18) than people without learning disabilities (13.7% in 2021/22, up from 12.5% in 2017/18).

Amongst people with learning disabilities, girls/women were more likely to be diagnosed with depression (18.4% in 2021/22, up from 16.8% in 2017/18) than boys/men (12.1% in 2021/22, up from 10.7% in 2017/18). In terms of age bands, from the ages of 25-34 years onwards, more than 10% of people with learning disabilities had a diagnosis of depression, peaking at 22.9% of people aged 55-64.

Anti-depressants. Overall, in 2021/22, 21.2% of people with learning disabilities were being prescribed anti-depressants, compared to 10.7% of people without learning disabilities. Girls/women with learning disabilities were more likely to be prescribed anti-depressants (26.0% in 2021/22, compared to 14.2% of girls/women without learning disabilities) than boys/men with learning disabilities (18.1% in 2021/22, compared to 7.2% of boys/men without learning disabilities). In terms of age bands, from the ages of 18-24 years onwards, more than 10% of people with learning disabilities were being prescribed anti-depressants, peaking at 31.8% of people aged 55-64.

For a longer period of time, the Health and Care dataset has also been reporting on people being prescribed anti-depressants when they don't have a diagnosis of depression. In 2021/22, 12.0% of people with learning disabilities without a diagnosis of depression were being prescribed anti-depressants, compared to 4.5% of people without learning disabilities or a diagnosis of depression. For both groups, this had increased since 2017/18 (11.0% of people with learning disabilities without a diagnosis of depression; 4.3% of people without learning disabilities or a diagnosis of depression). Again, this was more common for women with learning disabilities without a diagnosis of depression (13.6% in 2021/22) than men (10.9%). In terms of age bands, from the ages of 18-24 years onwards, more than 10% of people with learning disabilities but with no diagnosis of depression were being prescribed anti-depressants, peaking at 16.7% of people aged 55-64.

Taking into account differences in the populations of people with and without learning disabilities in things like age and sex, in 2021/22 being prescribed antidepressants was twice as common among people with learning disabilities than you would expect from general population prescribing rates; for those without a diagnosis of depression this rose to being 3 times more common.

Other mental health drugs

The Health and Care dataset also reports on other types of drugs used to affect people's mental health or behaviour.

Benzodiazepenes are a type of 'sedative' - they slow down the body and mind and are prescribed for anxiety or sleep problems . In 2021/22, 7.1% of people with learning disabilities were being prescribed benzodiazepenes (down from 7.6% in 2017/18) compared to 1.8% of people without learning disabilities (down from 2.4% in 2017/18). 

Amongst people with learning disabilities, in 2021/22 more women with learning disabilities (7.6%, down from 8.1% in 2017/18) than men (6.8%, down from 7.2% in 2017/18) were being prescribed benzodiazepenes. In terms of age bands, more than 10% of people with learning disabilities between the ages of 45 and 74 were being prescribed benzodiazepenes.

Epilepsy drugs are used to help control seizures, but can also be prescribed to affect someone's behaviour. In 2021/22, 4.9% of people with learning disabilities without an active epilepsy diagnosis were being prescribed epilepsy drugs (down from 5.5% in 2017/18) compared to 2.4% of people without learning disabilities or an active epilepsy diagnosis (stable over time from 2017/18). Amongst people with learning disabilities without an active epilepsy diagnosis, in 2012/22 more women (5.6%) than men (4.4%) were being prescribed epilepsy drugs. 

Taking into account differences in the populations of people with and without learning disabilities in things like age and sex, in 2021/22 being prescribed benzodiazepenes was 5 times as common among people with learning disabilities than you would expect from general population prescribing rates. In 2021/22, being prescribed with epilepsy drugs without an active epilepsy diagnosis was twice as common for people with learning disabilities than you would expect.

Conclusions

These statistics drawn from over half of all people registered with a GP in England, with all their caveats, clearly show that people with learning disabilities continue to be disproportionately prescribed mental health medications, often in the absence of a potentially relevant mental health or other diagnosis. While it might be argued that the STOMP and STAMP initiatives are having some impact on reducing the number of people being prescribed antipsychotics, benzodiazepenes and epilepsy drugs, the increasing numbers of people being prescribed antidepressants is threatening to cancel out any of these gains.

There are also some big gender differences amongst people with learning disabilities, with little sign of these gaps closing over time. And worryingly, given what we know about the side effects of many of these drugs over time, their addictive properties, and their potential impact on how they make people feel, significant numbers of people with learning disabilities are being prescribed these drugs at much earlier ages than people without learning disabilities for potentially longer periods of time.

From the Health and Care dataset. we don't know how many people with learning disabilities are being prescribed more than one mental health drug, although a research project in Jersey suggested that almost a quarter (23%) of people with learning disabilities were being prescribed two or more mental health drugs. We also don't know how many people with learning disabilities in inpatient units are being prescribed these types of medications. Finally we don't know much about what people with learning disabilities and those close to them think about these medications and what impact they have on people's lives - a new research project with co-researchers with learning disabilities is going to ask exactly these questions.

I am a 9.5 in 10 (with apologies to UB40): social care employment statistics and people with learning disabilities

This blogpost is the third in a set looking at various aspects of the social care statistics recently published by NHS Digital for 2021/22, focusing on adults with learning disabilities in England. The first two blogposts gave an overview of trends in social care support and social care spending for adults with learning disabilities.

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

It is important to note that these statistics are collected for financial years (April to March), so they will represent what was happening for adults with learning disabilities up to March 2022, through the continuing COVID-19 pandemic in England. It is also really important to say that the quality of this information has been questioned at the best of times – there are massive caveats about the extent to which local authorities would be able to collect this kind of information accurately throughout a pandemic.

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

What do the numbers tell us?

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

 

According to these figures, in 2021/22 there were 6,380 working age adults with learning disabilities getting long-term social care in any form of self/paid employment. After a couple of years of the number of people in paid/self employment edging towards 8,000, this is now the lowest number of people in paid employment since the first dodgy year of data collection in 2008/09. Consistent across the years is that most of the people in employment (71% of people in 2021/22) are working for less than 16 hours per week.

What do these numbers mean in terms of employment rates? The graph below shows the employment rates for working age adults with learning disabilities over the same time period. The columns show the overall employment rate - in 2021/22 this was 4.8%, compared to 76% for adults generally in March 2022. This is the lowest employment rate for adults with learning disabilities recorded since the statistics were changed in 2014/15.

The lines on the graph show employment rates for men and women with learning disabilities separately. Employment rates for men (the purple line) are consistently higher (5.3% in 2021/22) than employment rates for women (the blue line) (4.1% in 2021/22 with this gender employment gap staying fairly stable over time.

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

 

Over time, the number of people whose employment status is unknown has decreased rapidly, from 44% of working age adults with learning disabilities in 2014/15 to 21% of people in 2021/22 (21% is still a big chunk, however). It is unclear how councils are making decisions about whether to record someone as actively seeking work or not.

Overall, this update shows, bearing in mind understandable caveats about the quality of the information that could be collected during the continuing COVID-19 pandemic, further reductions in employment rates (from a ridiculously low base) for working age adults with learning disabilities getting long-term social care, with most work being extremely part-time, and a gender employment gap. 

As far as we know, many more than 5.1% of working age adults with learning disabilities want to work. We know that secure, stable paid employment for people with learning disabilities is associated with better physical and mental health, and we know that supported employment is highly cost-effective. Building sustainable, fulfilling paid employment for people with learning disabilities, in our current circumstances of wide-ranging labour shortages, surely has to be an urgent ‘building back better’ priority? Perhaps the ambitions of the May 2022 Government adult social care reform white paper will be reflected in improved figures next year...

I got bills: Social care spending 2021/22 and people with learning disabilities

NHS Digital have recently released their annual tranche of statistics concerning social care for adults in England. This blogpost is the latest in a series about social care statistics concerning adults with learning disabilities in England, updating the statistics to include the latest 2021/22 figures. Because the reporting year for these statistics runs from April to March, these are the second set of annual statistics that might tell us something about the impact of the COVID-19 pandemic on social care services for adults with learning disabilities. When looking through these statistics it is important to remember the pressures local authorities have been under, which might have affected the quality of the information collected.

Councils with social services responsibilities return information to NHS Digital every year on how many adults are using various forms of social care, and how much councils spend on social care (this doesn’t include other types of state funding relevant to social care, such as housing benefit as part of supported living support). I've tried to use some of the statistics to answer three questions about spending on social care services for adults with learning disabilities (questions relating to how many adults with learning disabilities are using social care are in a previous blogpost).

Question 1: How much money are councils spending on social care services for adults with learning disabilities?

The graph below shows gross expenditure by local authorities on social care for adults with learning disabilities from 2014/15 to 2021/22, broken down by age band and categories of spending. It is important to remember that these figures do not include housing benefit (an essential component of supported living arrangements). These figures are also not adjusted for inflation, which as we enter a time of high inflation is going to be even more important to take into account. However, using 2014/15 as a baseline (there had already been real-terms cuts to social care budgets by this point), the graphs also includes lines of what expenditure would be if social care expenditure only increased in line with inflation, using adult social care inflation figures from the invaluable PSSRU publication Unit Costs of Health and Social Care (2021 edition). 

A couple of observations. Overall, despite the number of adults getting social care decreasing during 2021/22, social services expenditure continued its steady upwards trajectory in absolute terms in 2021/22 at an annual growth rate of 4% from 2014/15. Local authority gross expenditure on social care for adults with learning disabilities totalled £6.5 billion in 2021/22, 30% of all local authority expenditure on adult social care. For both adults with learning disabilities aged 18-64 and adults with learning disabilities aged 65+, increases in expenditure ran slightly ahead of inflation. This indicates local authorities trying to protect these budgets, while at the same time falling short of what would be needed given projected increases in the population of adults with learning disabilities needing social care support.

The two line graphs below show trends in expenditure on specific types of social care service for adults with learning disabilities aged 18-64 and 65+ (with different scales for the two age groups). Spending on supported living continues to increase and has now overtaken spending on residential care - these two are by far the largest components of social care expenditure to support adults with learning disabilities.

 

Question 2: How much are people paying for social care in 'client contributions'?

When looking at the figures above on expenditure, it is important to remember that this is gross current expenditure - it does not take account of any income that might be coming into local authorities providing social care services. One source of income is 'client contributions' - money for social care support that is paid by people drawing on social care support or those close to them.

The two graphs below show the amount of income received by local authorities in client contributions for different types of social care support, for services for adults with learning disabilities aged 18-64 and for adults with learning disabilities aged 65+. As with the earlier overall expenditure graph, using 2014/15 as a baseline the graphs also includes lines of what expenditure would be if client contributions for social care only increased in line with inflation, using adult social care inflation figures from the PSSRU publication Unit Costs of Health and Social Care (2021 edition). 

For both adults aged 18-64 and adults aged 65+, the biggest types of client contributions were for residential care and contributions under the 'fairer charging' regimen and its successors. Also for both age groups, client contributions over time have increased faster than inflation, and in total added up to £472.7 million in 2021/22, representing 7% of total gross social care spending.

Question 3: Are unit costs changing over time?

Unit costs for residential care and nursing care for adults with learning disabilities continued their upward trend in 2021/22 for adults aged 18-64. For adults aged 18-64, the average cost to local authorities of residential care was £1,726 per person per week and nursing care £1,568 per person per week. Unit costs were cheaper in 2021/22 for adults aged 65+ compared to adults aged 18-64 (£1,155 per person per week in residential care; £792 per person per week in nursing care), with unit costs decreasing for adults aged 65+ from 2020/21 to 2021/22. It is worth noting that unit costs are higher for these services for adults with learning disabilities aged 18-64 than for any other group of people getting social care.

 

Summing up

Social care spending for adults with learning disabilities reported in 2021/22 seems to continue longer-term trends, with increases just above inflation, continued increases in spending on supported living, and both supported living and residential care being the biggest types of social care spending. Client contributions also continue to rise faster than inflation year-on-year. There is a more mixed picture when it comes to the unit costs of residential and nursing care.

Given that there were 2,275 fewer adults getting social care at the end of March 2022 compared to the end of March 2020, with high inflation and staff shortages a present reality, what kind of a future are councils planning for? How much are councils spending on block contracts irrespective of whether people want to live there, and on 'voids' where people aren't even living? A future combining a high eligibility barrier with expensive, restrictive service options predominating seems the very opposite of value for money.