Where are people with learning disabilities living? Or (again...) why social care isn't all about older people in care homes

I recently wrote a blogpost trying to summarise trends over time in social care services for adults with learning disabilities in England, using the latest annual tranche of statistics concerning social care for adults in England produced by NHS Digital. This slightly less epic blogpost focuses on one issue in more depth than I could go into there – where are adults with learning disabilities who are getting long-term social care living? Part of the purpose of this blogpost is to provide yet more evidence to the chorus of people shouting pointlessly throughout the COVID-19 pandemic that social care involves a lot more than older people in care homes.

As I mentioned in the previous blogpost, the shadow of COVID-19 falls heavily on these statistics, with 1,500 fewer adults with learning disabilities getting long-term social care at the end of March 2021 compared to a year before, possibly due to the high number of people with learning disabilities in England who have died from COVID-19. It is also important to note that the social care statistics identify people by their ‘primary care need’, and it is possible that some people with learning disabilities (for example a person with learning disabilities and dementia) have been identified as having a different primary care need. 

What are the living situations of adults with learning disabilities who are getting long-term social care?

The headline social care statistics only report the living situations of people living in residential care and nursing homes (social care support for people in other living situations is characterised by whether they’re getting council-commissioned support or some form of personal budget). The number of adults with learning disabilities in residential and nursing care from 2014/15 to 2020/21 is in the graph below, broken down by whether people are aged 18-64 or 65+. For people aged 18-64, the trend is for a substantial decrease in the number of people living in residential care – a reduction of 16% in 6 years. The picture for the number of adults aged 18-64 in nursing care is more static over time. For adults with learning disabilities aged 65+, the number of people in residential care and nursing care has been gradually increasing up to 2019/20 (although there were ominous decreases in 2020/21). 

However, adults with learning disabilities in these living situations are a minority of adults with learning disabilities who are getting long-term social care. Only 18% of adults with learning disabilities aged 18-64 and 37% of adults with learning disabilities aged 65+ who are getting long-term social care are living in residential or nursing care.

More hidden in the social care statistics is more detailed information on where local authorities think that adults with learning disabilities aged 18-64 who are getting long-term social care are living (a holdover indicator introduced, along with employment, with Valuing People). The monster graph below stacks up all the different types of living situation, from 2014/15 to 2020/21 (again note the ominous decrease in 2020/21).

 

To hopefully make this a bit more digestible, I’ve picked out trends for the most common types of living situation in the graph below. As the graph shows, the most common (and increasing up to 2019/20) living situations for adults with learning disabilities aged 18-64 are not residential or nursing care. By far the most common living situation was people living with their families (48,015 people in 2020/21; 36% of people recorded in this database). Over 30,000 people were living in some form of supported accommodation in 2020/21 (31,070 people; 23%), over 20,000 people were tenants or owner-occupiers (20,145 people; 15%) and 3,450 people (3%) were living in a Shared Lives arrangement. Throughout the COVID-19 pandemic adults with learning disabilities in all these living situations (and that’s without thinking of the majority of adults with learning disabilities, who do not get any social care support) were not exactly at the front of the queue when it came to government guidance, support with PPE and the essentials of daily life, repurposing much-needed social care support, and support to ensure that support workers could minimise the COVID-19 risks to themselves and the people they were supporting.

 

 Where is the money going? 

As well as looking at how many people are living in different kinds of places, we can also look at expenditure on different kinds of social care services for adults with learning disabilities. The graph below summarises gross current expenditure on different types of social care services for adults with learning disabilities aged 18-64 and 65+ (for more details see the previous blogpost). These figures are not adjusted for inflation. 

Despite the number of adults with learning disabilities aged 18-64 in residential or nursing care steadily falling over time (and representing 18% of those with learning disabilities in this age group getting long-term social care), expenditure on residential and nursing care for this group has stayed fairly static over time, and stood at £1.8 billion in 2020/21, 32% of all social care expenditure on adults with learning disabilities aged 18-64. Expenditure on supported living continues to increase year-on-year (standing at £1.6 billion in 2020/21), even into 2020/21 when the number of people aged 18-64 living in supported accommodation did not increase. The huge impact of the COVID-19 pandemic must be borne in mind here, particularly in how local authorities may have been financially managing ‘voids’ where unoccupied places continue to be at least partially funded (e.g. https://www.glh.org.uk/wp-content/uploads/2013/02/Void_protocol_example.pdf ).

 

So, among those adults with learning disabilities getting long-term social care, people are most commonly living with their families. The vast majority of adults with learning disabilities getting long-term social care (95%) are not older people living in residential or nursing care, and the vast majority of social care expenditure for adults with learning disabilities (94%) is not spend on residential or nursing care for older people. How can public discussion and policy-making be so punishingly reductive?