The independent analysis of the responses to the Learning Disabilities, Autism and Neurodivergence (LDAN) Bill consultation was published last week by the Scottish Government (SG) just ahead of the end of the summer recess period. This outlined that 877 responses were analysed overall, with almost 500 respondents providing feedback on the overarching data section. As we share our latest blog post on the newest research and data insights about the lives of people with learning disabilities, it’s encouraging to see such high levels of engagement with the Bill consultation. It demonstrates the value placed on robust data and evidence-based policymaking, highlighting a shared commitment to improving outcomes for people with learning disabilities in Scotland.
While we will need to wait a bit longer for an update on the next steps with the LDAN Bill and the proposals which the SG will look to take forward, this analysis report highlights both the acceptable conditions which respondents feel would need to be attached to current proposals and also where the main concerns lie. The analysis reports broad support for the collection and use of appropriately disaggregated data to address unmet needs, plan resources, and improve services for people with learning disabilities. Views on support for having a central Commission(er) responsible for data collation to ensure consistency, accountability and national oversight tended to be consistent with broader opinions on whether respondents agreed with the appointment of a Commision(er) in the first place.
On the proposal to review the deaths of people with learning disabilities, suggestions were made to expand reviews to include autistic and other neurodivergent individuals. As we highlighted in our response, there was also a call to focus on interventions for living individuals rather than after death. Concerns raised through the consultation were related to data protection, informed consent, and data validity, as well as ensuring that the increased burden of enhanced data collection leads to meaningful improvements. Respondent feedback, including as stressed by ourselves at the Fraser of Allander, emphasised that fulfilling any of the proposals set out in the consultation would require a strong commitment to increasing analytical resources.
We will provide further comments when more information about the LDAN Bill’s progression becomes available. We also look forward to the release of the health, disability and unpaid care topic data from Scotland’s Census 2022, which is due for publication on 3rd October 2024. For now, this round up (still absent the Mental Health Inpatient Census 2023, which has now been further delayed until November due to data quality concerns) covers the following items released over the summer months:
| Publication | Source | Date of release |
| Babies in care proceedings: What do we know about parents with learning disabilities or difficulties? | Nuffield Family Justice Observatory / The Institute of Public Care at Oxford Brookes University | 12th June 2024 |
| Scotland’s Devolved Employment Services: Statistical Summary for January to March 2024 | Scottish Government | 24th July 2024 |
| Cancer incidence and mortality in adults with learning disabilities | Ward LM, Cooper S, Sosenko F, et al available through the Scottish Learning Disabilities Observatory | 14th August 2024 |
| Insights into learning disabilities and complex needs: statistics for Scotland | Public Health Scotland | 3rd September 2024 |
- Babies in care proceedings: What do we know about parents with learning disabilities or difficulties? published by Nuffield Family Justice Observatory, written in partnership with The Institute of Public Care at Oxford Brookes University – 12th June 2024
This mixed method study analysed data for England to explore three key questions regarding the prevalence, circumstances and experiences of parents with learning disabilities or difficulties involved in care proceedings concerning their babies. The work utilised relevant data from recent court bundles and social work records (200 cases in total), interviews with four mothers with learning disabilities or learning difficulties who had experience of care proceedings, and interviews with 42 social care and 17 legal professionals.
The overall headline from the report states that, of the 200 care proceedings cases involving babies across four different local authority areas in England that were considered, one in three parents at risk of having their babies removed from their care had learning disabilities or learning difficulties, which were often not identified until the case reached court. This was despite 81% of the children being referred to children’s social care during their mother’s pregnancy,
The work suggests that parents with learning disabilities or learning difficulties, whose babies are involved in care proceedings, often miss the opportunity to access and meaningfully engage in pre-birth services that could help them develop and/or demonstrate their parenting abilities. These disabilities or difficulties frequently go unidentified until the cases reach court, resulting in support that has not been tailored to their needs. Professionals identified several key barriers to early identification, including the costs incurred by local authorities for early assessments, and social workers lacking the necessary training, experience, authority, or time to effectively screen or initiate a more in-depth assessment.
This study notably addresses the care and protection of children by considering the needs of their parents. Support for parenting was found to be inconsistently or inadequately adjusted for parents with learning disabilities or difficulties, with appropriate adjustments made in only about one third of the case files examined. This lack of reasonable adjustments, along with insufficient focus on relevant topics, was especially evident in cases involving pre-birth work with parents. Although capturing parental learning disabilities and learning difficulties is challenging due to the current structure of social work data systems in Scotland, this research for England has underlined the significance of this area for future exploration.
- Scotland’s Devolved Employment Services: Statistical Summary, for January to March 2024 published by Scottish Government – 24th July 2024
We have covered these quarterly statistics in our previous round-ups, where we have been gradually learning more about No One Left Behind (NOLB) participants, particularly those with long-term health conditions (LTHCs). This latest set of statistics provides progression/outcome data by LTHC for NOLB participants for the very first time, including an initial look at the progression of NOLB participants with learning disabilities.
Figure 1 NOLB participants reporting a learning disability (as a % of participants with one or more LTHCs) receiving employability support and achieving outcomes, from April 2019 to March 2024
Source: FAI analysis of Scottish Government data
The overall number of NOLB participants with a learning disability rose considerably over the last year (+56% increase comparing 2023/24 to 2022/23). However, only just under 2,000 (3%) of the 61,930 NOLB participants (i.e. those who do and those who do not have a long-term health condition) receiving employability support from April 2019 to March 2024 reported having a learning disability. This translates to 14% of participants receiving employability support who had one or more long-term health conditions, reporting a learning disability during this period.
The progression data shows that a total of 2,810 participants (20%) with one or more long-term health conditions entered employment compared to 16,336 (34%) of participants without a long-term health condition. Participants who reported a learning disability made up just under 13% of the 2,810 entering employment. There were 863 participants with one or more long-term health conditions who were in employment at 26 weeks; this included 117 (14%) participants with learning disabilities, and 260 participants with one or more long-term health conditions who were in employment at 52 weeks, including 45 (17%) with a learning disability.
Similarly, the proportion of participants with one or more long-term health conditions entering full time or higher education and/or training (1,550; 11%) was lower compared to participants with no long-term health conditions (7,233; 15%). Of the 1,550 with one or more long-term health conditions, 16% reported having a learning disability.
With a higher percentage entering employment and full time or higher education, the proportion of participants with no long-term health conditions gaining a qualification (6,745; 14%) was slightly lower compared to those with one or more long-term health conditions (2,335; 16%). Participants with a learning disability accounted for 13% of those with one or more long-term health conditions gaining a qualification.
This first release of NOLB outcome data by LTHCs indicates that the distribution of main outcome types for participants reporting a learning disability is broadly consistent with the overall proportion of participants with one or more LTHCs receiving employability support and reporting a learning disability. It will be important to monitor this data over time as future releases are made available, with a particular interest in how well those who report having a learning disability sustain employment outcomes.
- Cancer incidence and mortality in adults with learning disabilities (Ward LM, Cooper S, Sosenko F, et al) available through the Scottish Learning Disabilities Observatory – 14th August 2024
This retrospective cohort study involved linking data from Scotland’s 2011 Census with death and cancer registrations records from the Scottish Cancer Registry to examine cancer incidence and mortality rates in Scotland between 2011 and 2020. The analysis included approximately 18,000 adults with learning disabilities with assessments made against an unmatched comparison group of 15% of the general population without intellectual disabilities or autism. The researchers determined cancer incidence and mortality rates from early 2011 to the end of 2019 (i.e. pre Covid-19) by considering newly diagnosed cancer cases and cancer-related deaths occurring within that timeframe.
This work is seen to be the first comprehensive study in Scotland and the UK to report on the differences in cancer incidence and mortality between individuals with intellectual disabilities and the general population. The results revealed that adults with intellectual disabilities have a higher likelihood of dying from cancer compared to the general population, with distinct patterns in cancer incidence and mortality between those with and without intellectual disabilities. The key findings showed that adults with intellectual disabilities were 24% less likely to be diagnosed with cancer but had a 20% higher risk of dying from cancer than the general population. The most common cancers among adults with intellectual disabilities were those of the digestive system, particularly colorectal, lung, and breast cancers. The incidence of cancer that had spread to other parts of the body was twice as high in adults with intellectual disabilities, with a mortality rate three times greater than that of the general population. This point towards evidence of poorer health outcomes for people with intellectual disabilities as a likely result of delays in diagnosis.
Informed by this research, recommendations from Scottish Learning Disabilities Observatory (SLDO) include a stronger focus on early detection. This would be supported by ensuring that clear information around cancer symptoms is consistently available to those with intellectual disabilities, their families, and carers. The importance of close monitoring of participation in bowel and breast screening for people with intellectual disabilities is also highlighted. SLDO state that increasing participation rates is vital, whilst also prioritising investment in accessible and innovative solutions where current screening methods are inadequate.
Cancer can frequently be prevented or treated, yet there is limited robust evidence comparing cancer incidence and mortality between those with and without intellectual disabilities. Further research in this area is essential because general population health assumptions often don’t apply to individuals with learning disabilities, who experience significant health inequalities. SLDO have emphasised the need for further research to enhance understanding and support for the mental health of individuals with learning disabilities who are dealing with cancer and living with a diagnosis.
- Insights into learning disabilities and complex needs: statistics for Scotland published by Public Health Scotland – 3rd September 2024
This marks the third publication of statistics from Public Health Scotland on the Dynamic Support Register (DSR), which was introduced in May of last year following recommendations from the Scottish Government’s Coming Home Implementation Report. As of June 27, 2024, data shows that 1,515 adults with learning disabilities and complex care needs are now listed on local DSRs across Scotland. This upward trend likely reflects the ongoing development of local registers.
Table 1: Number of adults (18+) recorded on the Dynamic Support Register (DSR) in Scotland, between 28 September 2023 and 27 June 2024
| DSR Category | Number of People as at 28 September 2023 | Number of People as at 28 December 2023 | Number of People as at 28 March 2024 | Number of People as at 27 June 2024 |
| Classified as Urgent | ||||
| In Hospital | 171 (DD = 86) | 193 (DD = 89) | 192 (DD = 83) | 181 (DD=84) |
| Inappropriately Out-of-Area | 130 | 109 | 75 | 66 |
| At Risk of Support Breakdown | 154 | 200 | 222 | 227 |
| Total Urgent | 455 | 502 | 489 | 474 |
| Enhanced Monitoring | 144 | 183 | 175 | 183 |
| Appropriate Out-of-Area | 644 | 716 | 799 | 858 |
| Scotland | 1,243 | 1,401 | 1,463 | 1,515 |
| % Urgent | 37% | 36% | 33% | 31% |
DD = Classified as Delayed Discharge
Source: Public Health Scotland
Among the 1,515 adults on DSRs, 474 individuals (31%) are classified as “urgent.” The urgent categorisation includes three scenarios: adults who are currently in hospital, in out-of-area placements, or in situations where their current support arrangements are at risk of breaking down.
Although there was a slight decrease in the number of in hospital stays over the last quarter, this continues to be the greatest challenge, alongside delayed discharges. The latest data reveals that 84 (46%) of adults with learning disabilities and complex care needs currently in hospital are facing delays in returning to the community. Just like in previous quarters, many of these individuals have experienced prolonged waits, with 54 adults delayed for a year or more, including 12 who have been waiting for six years or longer.
While there are still no clear signs of progress in reducing inappropriate hospital stays for adults with learning disabilities and complex care needs, there appears to be potential improvement with an ongoing decline in inappropriate out-of-area placements. These placements occur when an individual, or their family, have not chosen the location, often due to a lack of resources or accommodation in their preferred community setting. The previous quarterly report suggested that this reduction may be influenced by factors such as the Health and Social Care Partnerships’ (HSCP’s) interpretation of guidance, as well as individuals transitioning to more suitable out-of-area settings. The increase in the appropriate out-of-area category reflects this shift. This category includes all individuals with learning disabilities who are appropriately placed out-of-area, whether within or outside of Scotland, with their support reviewed every six months. This placement could be based on the choice of the individual or their family, and any changes to support arrangements should only be considered if the placement is deemed inappropriate during a six-month review.
Overall, these statistics underline the ongoing challenges faced by adults with learning disabilities and complex care needs. The rising numbers of individuals at risk of instability in their living situations, along with persistent delays in discharge and inappropriate hospital stays, reveal a troubling reality. The ambition to see “real change” by March 2024, as set out in the Coming Home Implementation report, remains unmet. The situation highlights the urgent need for action to better uphold the rights and dignity of adults with learning disabilities and complex care needs, ensuring they receive timely and appropriate support.
Authors
David is a Senior Knowledge Exchange Fellow at the Fraser of Allander Institute. Previously, he worked in a range of analytical positions across the public sector, primarily as a statistician.