'Client contributions' to social care - adults with learning disabilities

With recent campaigning about drastically increasing charges for people drawing on adult social care, I thought I'd have a quick look at what the NHS Digital statistics say about the scale of 'client contributions' to adult social care in England. I've only looked at figures for adults labelled as having a primary care need of learning disabilities (the same analyses could be done for other groups of people), and I've looked at figures from 2016/17 to 2019/20. This is obviously before COVID-19 really hit, but it might give a bit of a picture of how things were going before the pandemic.

I last did a blogpost about this 6 years ago (the way the statistics are collected has changed since then, so the figures aren't directly comparable), and this blogpost on social care statistics and adults with learning disabilities might be useful for context.

Two graphs.

This graph below shows the amount that local authorities received in 'client contributions' to social care services for adults with learning disabilities aged 18-64. A few things:

• In 2019/20, client contributions totalled £369 million for adults with learning disabilities aged 18-64, 6.8% of the total gross expenditure of local authorities on social care for this group. This equates to an average of £2,265 per year per person getting long term social care.
• From 2016/17 to 2019/20, the total amount of client contributions has increased by 6.4% per year (Compound Annual Growth Rate), compared to 3.8% per year for local authority spending (minus client contributions). It's important to say that these figures aren't adjusted for inflation.
• The greatest client contributions were in the categories of Fairer Charging Income (£137.2 million) and residential care (£123.8 million). 
• While client contributions to residential care are reducing over time (in line with residential care services reducing over time), client contributions to Fairer Charging (10.8% per year) and many other types of support have increased rapidly from 2016/17 to 2019/20.

The second graph below is in the same format, and shows the amount that local authorities received in 'client contributions' to social care services for adults with learning disabilities aged 65+:

• In 2019/20, client contributions totalled £78.4 million for adults with learning disabilities aged 65+, 11.1% of the total gross expenditure of local authorities on social care for this group. This equates to an average of £3,703 per year per person getting long term social care.
• From 2016/17 to 2019/20, the total amount of client contributions has increased by 6.1% per year (Compound Annual Growth Rate), compared to 7.2% per year for local authority spending (minus client contributions). Again, it's important to say that these figures aren't adjusted for inflation.
• The greatest client contributions were in the categories of residential care (£35.4 million) and Fairer Charging Income (£25 million). 
• While client contributions to residential care are fluctuating over time, client contributions to Fairer Charging (15.8% per year) and many other types of support have increased rapidly from 2016/17 to 2019/20.

Local authorities have generally tried to preserve spending on social care services for adults with learning disabilities up to the start of the pandemic, although this is not keeping pace with the number of adults with learning disabilities who could do with some social care support. Austerity for local authorities is also, of course, austerity in the lives of many people with learning disabilities and their families and friends, and these statistics show that people and families are being required to make rapidly increasing contributions that many can ill afford. And of course, these statistics only record formal 'client contributions', when we know that many families are making substantial contributions that would not show up in these statistics.

Finally, all these statistics are before the impact of the COVID-19 pandemic, when we know that people with learning disabilities have faced huge cuts to their social care support and there is real anxiety about rapidly increasing charges. Are we really building back better?

COVID-19 vaccination and people with learning disabilities in England - how is it going?

For a couple of months now, there has been official recognition of people with learning disabilities as a priority for the COVID-19 vaccine across all parts of the UK. But as we know from sometimes bitter experience, "between the idea and the reality, between the motion and the act, falls the Shadow" (thanks for that TS Eliot, don't sue me!). What do we know about how many people with learning disabilities have actually received the COVID-19 vaccine? Are there inequities in vaccine coverage between people with learning disabilities and other people, and are there the kind of inequities in vaccine coverage within the population of people with learning disabilities (for example by ethnicity) that we are seeing for people generally?

This blogpost will quickly summarise some information we have for England, produced with remarkable speed by the OpenSafely consortium based on the GP records of about 40% of the population of England. The OpenSafely consortium produces weekly updates of vaccine coverage, including in many cases disaggregated information about people with learning disabilities compared to other people (based on GP registration as a person with learning disabilities and/or on GP recording of a fairly limited set of 'conditions'). The weekly report I will refer to here was produced on 12th April 2021, and includes information on vaccinations up to and including 7th April 2021. I have drawn a couple of graphs trying to summarise the wealth of information they provide to focus on people with learning disabilities.

The first graph below shows COVID-19 vaccination coverage for a range of groups of people: people shielding aged 16-69; people aged 65-69 (not shielding or living a care home); people aged 70-79 (not living in care home); and people aged 80+ (not living in a care home). Probably due to small numbers, OpenSafely do not disaggregate their information on vaccine coverage for older people in care homes by learning disability. In each group, vaccine coverage is split by people with learning disabilities (dark purple bars for vaccines up to the last 7 days, with red tips for vaccines in the last 7 days) and other people (lilac bars with light red tips). 

A few things that I think this graph shows. First, for all groups of older people with learning disabilities aged 65+, COVID-19 vaccine coverage levels are around 90% or above, only about 2-3% lower than the COVID-19 vaccine coverage levels for other people in these age groups. Second, for people shielding aged 16-19, COVID-19 vaccine coverage for people with learning disabilities is just about at 90% after a short period of time, with vaccine coverage for people with learning disabilities slightly higher (by 3.5%) than for other people shielding. Third, very few new people in all these groups are being vaccinated, so specific efforts need to be made to ensure that vaccine coverage is as complete as possible, including reasonable adjustments to the vaccination process.

The graph below is taken directly from the OpenSafely weekly report, and shows cumulative vaccine coverage over time for people with learning disabilities (organe line) and other people (blue line) aged 80+. This is a fairly typical pattern for COVID-19 vaccines over time - at first vaccine coverage for people with learning disabilities lags behind, but then catches up as vaccine coverage reaches saturation for people generally. 

Overall this is a highly encouraging picture, with inequities in COVID-19 vaccine coverage between people with and without learning disabilities (after some worrying lag times) appearing to be relatively small or even reversed.

The second question I asked at the start of this post is about inequities in vaccine coverage within the group of people with learning disabilities. The graph below summarises OpenSafely information on COVID-19 vaccine coverage within the group of adults with learning disabilities aged 16-64 who are not officially shielding (although we know substantial numbers of adults with learning disabilities are likely to have been de facto shielding even if they don't have an official shielding letter). 

Overall, almost 80% of people with learning disabilities in this group have had their first dose of the COVID-19 vaccine (and 4.4% of people have received their second dose). Within this overall encouraging news there are, however, the kinds of substantial inequities in COVID-19 vaccine coverage that we are seeing generally. Men are slightly less likely than women to have had the COVID-19 vaccine, but there are bigger vaccine coverage gaps amongst younger people and particularly amongst people from a range of minority ethnic communities. The red tips of the purple bars (showing vaccine coverage in the last 7 days) suggests that these inequities aren't being closed.

Overall, the picture of COVID-19 vaccine coverage is encouraging for people with learning disabilities, with high rates of first dose vaccine coverage getting towards 90% of people with learning disabilities which is not far off the general population. But there are also substantial inequities in COVID-19 vaccine coverage within the population of people with learning disabilities, particularly amongst some groups of people who may be at greater risk of serious consequences from COVID-19. Alongside the priority to ensure that people with learning disabilities take up their second dose, urgent attention needs to be paid to redressing these inequities. Are general efforts to increase vaccine uptake among under-served groups inclusive of people with learning disabilities, and are vaccination programmes focused on people with learning disabilities effectively reaching under-served groups of people with learning disabilities?