Where are we at with social care for adults with learning disabilities?

This year I’ve going to try and write slightly more blogposts than last year (don’t say you weren’t warned), with a focus on information rather than opinion where possible. So, on the day when the NHS Long Term Plan is published, it makes perfect sense to start with a blogpost on… social care. This post will look at trends in the data produced by NHS Digital on social care statistics related to adults with learning disabilities. There will be graphs.

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). When looking at trends over time it’s important to remember that there were big changes in the way information was collected between 2013/14 and 2014/15, the one with the biggest impact being that up to 2013/14 most information was collected on people known to social services whereas from 2014/15 onwards most important is collected only on people getting ‘long-term’ social care. Most of the information for 2017/18 can be found here and here.

First, how many adults with learning disabilities are getting access to social care? From 2014/15 the types of long-term social care support people get have been grouped into one of six mutually exclusive categories: residential care, nursing care, direct payment only, support via a personal budget partly including a direct payment, a council-managed personal budget, and council-commissioned community support only. For most of these categories there is also equivalent information from 2009/10.

The first graph below show the number of adults with learning disabilities aged 18-64 getting various types of personal budget or council-commissioned community support from 2009/10 to 2017/18 (bearing in mind the change in data collection between 2013/14 and 2014/15). This graph shows that adults with learning disabilities aged 18-64 were most commonly getting support in the form of council-managed personal budgets (the extent to which most of these feel any different to council-commissioned community services is debatable). The number of people getting support in the form of direct payment only or with part-direct payment has been consistently rising over time.

The second graph below presents the same information for adults with learning disabilities aged 65+, from 2014/15 (when the information first became available). Again, council-managed personal budgets are the most common form of community-based support for older adults.

The next graph below (using the same axis for ease of comparison) shows the number of adults with learning disabilities aged 18-64 in residential care and nursing care. The graph shows that although the number of adults aged 18-64 in residential care and nursing care have been gradually declining over time, they still represent 20% of all adults with learning disabilities aged 18-64 getting long-term social care.

The same information for adults with learning disabilities aged 65+ is in the next graph. The number of older adults with learning disabilities in residential care and nursing care has if anything slightly increased over time, with over 40% of older adults with learning disabilities getting long-term social care in residential or nursing care.

It’s also highly likely that these figures under-represent the number of people with learning disabilities in residential and nursing care. From 2014-15 everyone using social care is allocated to a single category of ‘primary need’ – learning disabilities is one of these categories, but it is also possible that a person with learning disabilities may be allocated to a different ‘primary need’ such as physical support, sensory support, mental health support, or support with memory and cognition (e.g. dementia). We don’t know the extent to which people with learning disabilities, particularly as they get older, are re-assigned to a different category and potentially moved into generic residential or nursing care places.

The temptation for cash-strapped commissioners to do this is strong as residential and nursing care for people with learning disabilities are a lot more expensive than residential and nursing care for other groups, and residential and nursing care for people aged 18-64 are much more expensive than residential and nursing care for people aged 65+. In 2017/18 the average fee of residential care for adults with learning disabilities aged 18-64 was £1,476 per week, compared to the next most expensive £1,159 for adults aged 18-64 needing sensory support. Nursing care for adults with learning disabilities aged 18-64 was charged at an average £1,246 per week, compared to the next most expensive £862.38 per week for people needing physical support. Residential care for adults with learning disabilities aged 65+ was an average £961 per week, compared to the next most expensive £567 per week for older people needing physical support. Finally, nursing care for adults with learning disabilities was an average £833 per week, compared to the next most expensive £660 per week for older people needing mental health support.

So far this is pretty broad-brush information, but from 2009/10 councils have also provided more detailed information on where they think adults with learning disabilities aged 18-64 are living. The differences between information up to 2013/14 (on everyone known to councils) and information from 2014/15 (on people getting long-term social care support) are pretty stark here, as most numbers are considerably lower in 2014/15 compared to 2013/14. The graph below is very complicated as there are a lot of categories, but there are a couple of things that stand out for me.

First, by far the most common living situation for adults with learning disabilities aged 18-64 is ‘settled mainstream housing with family/friends’ – i.e. for almost everyone living with family – in 2017/18 this applied to 48,165 people, 36.7% of all working age adults with learning disabilities getting long-term social care. And the number of people councils are reporting as living with families is rising rapidly. Also rising rapidly are the number of working age adults with learning disabilities in supported accommodation of some kind, with tenancies previously rising but now stalled and residential acre gradually decreasing. Worrying is the small but rapidly rising number of working age adults with learning disabilities in various types of obviously temporary accommodation (short-term stay with family/friends, council-provided temporary accommodation and other temporary accommodation), rising by 32% in three years from 1,205 people in 2014/15 to 1,590 people in 2017/18. And these figures don’t include most adults with learning disabilities in inpatient services - councils only recorded 415 people in these places in 2017/18, with their reported numbers (along with their apparent sense of responsibility) dropping rapidly over time.

One final thing I’d like to mention about the number of adults with learning disabilities getting social care support is that, as far as we can tell, the numbers are continuing to slowly increase, with councils seemingly trying to protect services for adults with learning disabilities as much as they can. However, the small increases we see are nowhere enough to keep up with the likely increase in the number of adults with learning disabilities needing social care support. In 2012, a team led by Eric Emerson produced some projections of the number of adults with learning disabilities likely to need social care support up to 2030. Even under the most restrictive funding scenario (with only people with critical or substantial needs getting social care support) we estimated that by 2018 there would be 166,114 adults with learning disabilities needing social care support, compared to the 147,920 adults actually getting long-term social care support in 2017/18.

One final graph – on the money that councils spend on social care for adults with learning disabilities from 2014/15 to 2017/18. These figures are not adjusted for inflation, although the squeeze on social care spending has meant that social care inflation has been relatively low in recent years. A couple of observations. Overall, the amount of social care funding for adults continues to increase slightly in absolute terms, from £4.98 billion in 2014/15 to £5.54 billion in 2017/18, although an annual inflation rate of 3% would pretty much wipe this increase out. Second, almost the entire social care budget (98.5%) is spent on long-term support rather than short-term support. Finally, despite apparent reductions in their use, social care spending on residential and nursing care for adults with learning disabilities still represents 37% of all social care expenditure on adults with learning disabilities.

I hope this blogpost provides some useful information. I think it shows that councils are trying to protect social care funding for adults with learning disabilities relative to the huge cuts in income they have experienced. However, this isn’t nearly keeping pace with the number of people needing social care support, and there are worrying signs that there are likely to be large numbers of adults with learning disabilities either getting no support at all, or getting support that isn’t right for them, with immediate and longer-term consequences for them and their families.