Latest statistics relating to the lives of people with learning disabilities – Round Up

Enhancing the collection and dissemination of data on the lives of people with learning disabilities is an important step in improving the visibility of the challenges they face as well as allowing scrutiny of progress towards opening up more opportunities.

When we published our Data on the lives of people with learning disabilities in Scotland: short term actions for change report in May of this year, we discussed the main sources of population estimates for people with learning disabilities in Scotland. We also covered data sources with further information collected on those drawing on health and care services.

An Annex at the end of the report, described as a ‘data catalogue’ summarised the data sources which contribute to the current learning disability evidence base in Scotland. As we said at the time – this did not cover every source which related in some way or another to people in Scotland with a learning disability. Some of those data sources not previously discussed will be covered in this first in a series learning disability statistical round ups.

The aim of these is to summarise the latest published statistics concerning the lives of people with learning disabilities. We will predominantly focus on sources in Scotland but will occasionally cover others from elsewhere when there is a particular relevance to Scotland.

In this round up we cover the following recent data releases:

• Disability and Transport 2021 published by Transport Scotland – 18^th October 2023

This report presents transport and travel findings from the Scottish Household Survey (SHS). The publication also includes data for the Accessible Travel Framework’s outcome indicators. The outcome indicators use data from the Scottish Household Survey, the Bus Passenger Survey and National Rail Passenger Survey, as well as other sources.

The Scottish Household Survey is a continuous survey and is based on a sample of the general population in private residences in Scotland. It has been undertaken annually since 1999 and has around 10,000 respondents each year (apart from 2020, which had around 4,200 responses due to COVID-19 restrictions). As the survey only samples private residences, people in accommodation such as hospitals and care homes are not included. The survey uses the term Learning or behavioural problems (e.g. autism, Down’s Syndrome) as part of two questions relevant to disability which are asked of the highest income householder about all the members of the household. This is not an ideal categorisation as it fails to provide insight specifically on individuals with a learning disability, as well as being inconsistent with other sources such as Scotland’s Census.

These statistics, which include figures averaged over the five years from 2017 to 2021 and are not comparable with the previous edition, show that of all the conditions reported, people with learning or behavioural problems were least satisfied with public transport, with 61% saying they were very or fairly satisfied compared with 68% of people overall. This is a particular concern when you consider that people with learning or behavioural problems will have one of the highest dependencies on public transport, with the data showing that driving license ownership for this group sitting at 19%. Only those with epilepsy (17%) have a lower percentage of licence ownership.

The main modes of transport reported for people with learning or behavioural problems were walking (37%), car/van passenger (28%) and bus (19%), although how much this reflects their satisfaction levels of public transport is difficult to surmise. From this data source we also know that people with learning or behavioural problems were amongst the least likely to have flown for leisure in the last twelve months (13%).

Table 1: Median household income by whether adult is disabled, whether a long-term health condition affects their day-to-day activities, and the nature of the condition, 2017-2021 (combined)

Source: Scottish Household Survey

As well as capturing statistics which are directly transport related, this publication also provides data on demographic characteristics of disabled people in the Scottish Household Survey. As discussed in a previous blog post Exploring the Labour Market Data Landscape for Individuals with Learning Disabilities in Scotland, employment and earnings data on people with learning disabilities from official labour market sources is limited. Therefore, whilst recognising sample sizes, looking at sources such as the SHS can help enhance the evidence base when trying to understand the dynamics of the labour market for people with learnings disabilities in Scotland.

According to the data in this release, of all the conditions listed within the SHS, adults with learning or behavioural problems make up the highest percentage of those who are unemployed and seeking work (11%). On earnings, it shows the disparity in median household income between adults who are disabled and those who are not. Table 1 highlights that this difference is just over £12,000, whilst those adults with learning or behavioural problems have lower median earnings compared to the over disabled category.

• Scotland’s Devolved Employment Services: Statistical Summary for April to June 2023 published by Scottish Government – 25^th October 2023

This report presents statistics for Scotland’s Devolved Employment Services including Fair Start Scotland (FSS) and No One Left Behind. FSS is an employability support service, first launched in April 2018, which aims to help those furthest from the labour market move into and sustain fair work. No One Left Behind, introduced from April 2019, is the newer approach to employability delivery which moves away from funding and delivering a number of separate and distinct employability programmes, to a more flexible approach. The aim being to provide a person-centred employability system which can integrate with other key services to help people to find, stay and progress in sustainable work.

The latest statistics for Fair Start Scotland showed that overall, 61% (34,072) of people joining FSS reported a Long-Term Health Condition (LTHC) (including physical and learning disabilities). Disability, in legislative terms has a strict definition based on answers to two questions related to physical or mental health condition or illness lasting or expected to last 12 months or more, and whether the condition or illness reduces an individual’s ability to carry-out day-to-day activities. Overall, 44% (24,404) of FSS participants have a disability compared to 48% (26,459) who do not. This is unknown for the remaining 9% (4,824) of participants.

Figure 1: Percentage of People Starting on FSS Reporting Long-Term Health Conditions, April 2018 to June 2023

Source: Scottish Government

Having a mental health condition is the most reported (33%) long-term health condition for people starting on Fair Start Scotland, whilst reporting a learning disability is one of the lowest reported long-term conditions (1%). Having a distinct learning disability category presented in these statistics is a positive and represents a level of data disaggregation which can add most value to the evidence base.

When it comes to looking at the outcomes data – starts with a LTHC that limits daily activities a lot, 25% enter employment with 13% of starts with a LTHC that limits daily activities a lot, sustaining employment for 12 months. The results are somewhat similar for the small number of FSS starts who report having a learning disability with the latest data showing 26% of these starts entering employment and 11% of starts with a learning disability, remaining in employment for 12 months.

As we have previously highlighted the support that people with learning disabilities need to access the labour market is often specialist, yet very few employability programmes are specifically designed for people with learning disabilities. The take up of mainstream employability programmes, such as Fair Start Scotland, by people with learning disabilities is very low. It will therefore be interesting to analyse the LTHC data for No One Left Behind participants when it is published for the first time by the Scottish Government in the new year. This data has been collected at the necessary level of detail thanks to the new Shared Measurement Framework which was put in place in October 2022. It reflects work undertaken by Scottish Government and Local Authorities to agree and finalise a new data template to be used for the collection of No One Left Behind employability statistics.

• Insights in social care: statistics for Scotland, Care at home services published by Public Health Scotland – 7 November 2023

This release provides information on people receiving care at home support and services in Scotland, with the latest data for financial year 2022/23 now available. The data relates to care at home services provided and/or funded by health and social care partnerships in Scotland and it also reports on emergency healthcare for some clients. Care at Home is defined as care tailored to the needs of an individual that is provided in a person’s own home. Packages of care can include support with personal care but also support with other tasks around the house such as cleaning or preparing meals.

Figure 2: Number of people with a Learning Disability receiving care at home in Scotland 2018/19 to 2022/23

Source: Public Health Scotland

The number of people receiving care at home overall in Scotland has remained generally flat over the last five financial years, with the 89,620 people drawing on care at home support in 2022/23. This is a trend which is broadly matched by the learning disability client group over the same time period, with 6,265 people with a learning disability receiving care at home in Scotland in 2022/23. This represents a 3.5% increase on the previous financial year and is the highest number over the last five years.

• Care home census for adults in Scotland published by Public Health Scotland (21 November 2023)

This release provides information on the number of care homes, registered places, residents, admissions and discharges across Scotland, with the latest data covering the period from 2012/13 to 2022/23.  The publication reports on all care home residents from the annual Care Home Census for Adults, regardless of the source of the funding.

The statistics show that on 31 March 2023, there were 1,037 care homes for adults in Scotland and 146 (14%) of these were for learning disabilities.  The total number of care homes for adults has fallen by 19% since 2013, with the largest decreases seen in the voluntary/not for profit, and Local Authority/Health Board sectors (37% and 31%, respectively) compared to only a 7% decrease in the private sector.

Figure 3: Number of care homes for learning disabilities, mental health problems, and physical and sensory impairment (2013 to 2023)

Source: Public Health Scotland

There were 233 care homes for learning disabilities in 2013, therefore the last 10 years represents a 37% decline. As figure 3 shows, there has also been a reduction in the number of care homes for mental health problems and physical and sensory impairment. On 31 March 2023, more than half of residents in care homes for learning disabilities were in care homes run by the voluntary or not for profit sector (53%). This compares to 40% run by the private sector and 8% were local authority / health board run.

Figure 4: Estimated mean ongoing of length of stay residents for long stay residents in care homes for learning disabilities, mental health problems, and physical and sensory impairment (2013 to 2023)

Source: Public Health Scotland

Whilst it is reported that many factors may have contributed to the drop in the number of care homes for learning disabilities, it may be explained, at least in part, by the move to supporting people with learning disabilities in the community, rather than in care homes or other institutional settings. The latest care home census data does show however that 69% of long stay residents in care homes for learning disabilities have experienced an ongoing length of stay of 5 years or longer, with the mean ongoing length of stay being 13 years.

The data also shows that the mean age of a long stay resident in a care home for learning disabilities on 31 March 2023 was 48 years, compared to 83 years in a care home for older people. Unlike in care homes for older people, more long stay residents in care homes for learning disabilities are male (58%)

With a decline in the number of care homes for learning disabilities, it is not surprising there was also a decrease in the estimated number of people living in care homes for learning disabilities. This number fell from 1,859 residents in 2013 to 1,313 residents in 2023 which equates to a 29% reduction. The number of registered places in care homes for learning disabilities has fallen by a similar percentage (30%) over the last 10 years.

• Insights into Learning Disabilities and Complex Needs: Statistics for Scotland published by Public Health Scotland – 28 November 2023

The first in a new series of statistical reporting, this publication comes on the back of the Scottish Government’s Coming Home Implementation report in February 2022. By publishing information collected from Health and Social Care Partnerships (HSCPs) across Scotland, this experimental statistics release aims to enhance the visibility of local and national data to support the Scottish Government’s work to improve monitoring of people with learning disabilities and complex care needs who are in hospital, in out-of-area placements and whose current support arrangements are at risk of breaking down, as indicated by the mission statement included in the Coming Home Implementation report.

“By March 2024 we want and need to see real change with out-of-area residential placements and inappropriate hospital stays greatly reduced, to the point that out-of-area residential placements are only made through individual or family choices and people are only in hospital for as long as they require assessment and treatment”

Source: Scottish Government

A recommendation of the Coming Home Implementation report, the Dynamic Support Register (DSR) was launched in May 2023. The register which is likely to be at different stages of implementation at a local level, is applicable for adults (aged 18+) with learning disabilities and complex care needs whose support is funded by a Scottish Local Authority or Health Board. As at 28 September 2023, there were 1,243 adults in Scotland on local dynamic support registers.

Table 2: Number of adults (18+) recorded on the Dynamic Support Register (DRS) in Scotland, as at 28 September 2023

Source: Public Health Scotland (Note: Argyll & Bute provided data on appropriate out-of-area placements only)

The DSR has different levels of categories for inclusion. As table 2 shows, 171 people (13.8%) are recorded as in hospital and 86 of those adults were classified as delayed discharge. The most common length of stay in hospital for those recorded on the DSR as at 28 September was between 2 and 5 years (26.9%), followed by 30 adults (17.5%) who were recorded as having a length of stay of 10+ years.

There are 10.5% of adults on the DSR recorded as inappropriately Out-of-Area because their placement is one which the person and/or family did not choose but has occurred due to a lack of resources and/or accommodation within the person’s preferred community setting. The risk of support breakdown refers to the scenario where the living situation for adults on the SBR is becoming unsuitable. As at 28 September 2023, there were 154 (12.4%) adults in this position for a range of reasons which could include family carers becoming unable to continue to supply the level of care they previously provided.

Anyone within these three categories is classified as urgent, with a total of 455 adults (37%) recorded on DSR as at 28 September 2023 falling under this classification.

Adults who have left hospital or an Out-of-Area placement within the last six months are categorised as Enhanced Monitoring (11.6%) in table 2. And just over half (51.8%) of adults on the DSR are recorded as appropriate out-of-area. This category applies to everyone with a learning disability who is placed appropriately out-of-area, both within Scotland and out of Scotland, in order to ensure their support is reviewed every 6 months. This could be through the choice of the person or their family and action should only be taken to change the person’s support arrangements if the placement is deemed inappropriate at a 6 monthly review.

Consistent with other data sources, there are more males (62.4%) with learning disabilities on the SBR than females (37.6%). The report explains that this is to be expected because certain causes of learning disability are related to gene mutations on the X chromosome. The most common age group of adults on the DSR, as at 28 September 2023 was 26-39 and this was the case for both sex.

The increased availability of data which will support the Scottish Government’s efforts to deliver on the mission statement within the Coming Home Implementation report is to be welcomed. This certainly adds much needed transparency to assess whether progress is being made. Comparisons with delayed discharge data collected for the Coming Home report in 2018 from 30 HSCPs back in 2017 do not look particularly favourable (67 people in 2017 vs 86 as at 28 September 2023). However, with this being only the first set of these newly published statistics, it is difficult to say too much at this stage about policy impact and we will continue to monitor the data closely going forward.

As the data collection was piloted in some HSCPS and implementation is likely to be at different stages across the country, we would expect this to mature over time and therefore be able to draw more insight at both a national and local level through future data releases. The next publication is due in May 2024, and will come on the back of the Scottish Government’s direction to Health Boards to have offered new annual health checks to those aged 16 and over with a learning disability by 31 March 2024. As we at the Fraser have previously discussed, this may lead to the consideration of how the annual heath checks could develop another register of people with learning disabilities across Scotland. This should alleviate the difficulties of trying to extrapolate prevalence from DSR data which at this stage seems an unlikely possibility. We await confirmation of details on how and when the data collected through these new annual health checks is expected to be made available.

Authors

David Jack

David Jack is a Statistician on a part-time secondment from Research Data Scotland.