This briefing paper has been prepared to support evidence provided to the Health and Social Care Committee’s inquiry into the “Treatment of autistic people and individuals with learning disabilities”. The objective of this paper is to provide an outline of what we know about the costs of support for people with learning disabilities and autistic people. What is clear from the outset is that much of the data available relates to people with a learning disability, some of whom may also be autistic. There appears to be very little data available on the cost of supporting autistic people in the community who do not have a learning disability. In fact, there is also very little information about the kind of support that is available to autistic people who do not have a learning disability. This immediately raises questions about how our society includes and supports autistic people prior to crisis and the difficulty that this poses in trying to prevent their admission to inpatient hospitals.
According to People with Learning Disabilities in England, in 2017-18 there were 147,915 people with a learning disability aged between 16-64 who received long term social care support. Of those:-
Of those aged over 65:-
During the same period, the total gross social care expenditure on adults with a learning disability was £5.5 billion, 89.3% of which is spent on long term care for adults aged 18-64. Of that:-
For older adults aged over 65:-
I’ve not been able to identify specific data on the costs of specific forms of provision but If we divide the levels of expenditure by the number of people receiving specific forms of provision we get a very rough indication of the amounts being spent per capita. So, for example, this would give an average per capita cost of:-
This compares to the average cost of an inpatient hospital support package of:-
As with all of the figures in this briefing there is likely to be a significant amount of variation around any average figures. What is interesting to note is that the more an individual is removed from their community or the greater the level of institutionalisation, the more expensive supporting people becomes.
The costs of supporting former inpatients and people at risk
There does not appear to be any data published by public authorities on the costs of support for former inpatients. However, in 2017 I co-wrote “A Trade in People” in partnership with Elaine James and Chris Hatton which was based on information that I had obtained from a Freedom of Information Request made to NHS for the financial appendices to the Transforming Care Plans developed by the Transforming Care Partnerships in 2015-16. These appendices asked the partnerships to provide a detailed breakdown of the costs of supporting former inpatients and people who were at risk of becoming inpatients. From these we can see that in England and excluding greater Manchester which didn’t provide any data, there were:-
As we argued in “A Trade in People”, the reasons for that level of concentration appear to be historical and rooted in the economic choices of providers, as people are discharged into the communities in which they were hospitalised rather than those that they would once have called home. In addition to the support provided by the NHS through section S117 and Continuing Health Care funding there were:-
The average cost of support packages ranged from £66,314 for local government funded support packages for former inpatients to £117,721 for Section S117 and Continuing Health Care funded packages of support.
The total number of packages of support was estimated at 18,380.
The total cost to local authorities for former inpatients and people at risk in 2015-16 was estimated to be £808,086,200 and that to CCGs at £438,090,300. This is in addition to the £477,400,000 that was being spent in the same year on inpatient hospital provision for autistic people and people with learning disabilities.
These figures have been taken from the returns that each TCP provided to NHSE however they should be treated with some caution as there appeared to be significant differences in the way in which partnerships interpreted the data they were being asked to provide. For example, some areas identified significant numbers of people as being at risk of admission to inpatient hospital, whereas others with similar populations only identified a very small number. This probably reflects the difficulty that there is identifying people who are at risk of crisis before they go into crisis and may be one of the reasons that the Transforming Care programme has had difficulty in controlling the numbers of new admissions.
It’s worth remembering that there are over a million people with learning disabilities and approximately 700,000 autistic people in the UK. The great majority of whom receive no support from the government beyond that which is available to everybody else.
Link to support in the Community costs spreadsheet (ADL0009).
People with learning disabilities in England Chapter 5: adult social care - GOV.UK (www.gov.uk)