2 Executive Summary
2.1 Introduction and Overview of the Project
A priority within The keys to life is that all adults with learning disabilities, including those with complex needs, experience meaningful and fulfilled lives. This includes where individuals live, as well as the services they receive. Some people with learning disabilities and complex needs are living far from home or within NHS hospitals; there is an urgent need to address this issue. The Scottish Government commissioned a two-year project to look specifically at the support provided to people with learning disabilities who have complex needs. The focus of the project was to identify the number of people involved, and also to suggest support solutions for individuals with learning disabilities who have complex needs, and who are either placed out-of-area, or are currently delayed in hospital-based assessment & treatment units.
The Scottish Government wants to support Health and Social Care Partnerships (HSCPs) to find alternatives to out-of-area placements, and to eradicate delayed discharge for people with learning disabilities.
The Scottish Government's vision for people with learning disabilities and complex needs within Scotland is that everyone is supported to lead full, healthy, productive, and independent lives in their communities, with access to a range of options and life choices.
2.2 Data Collection and Analysis
The scope of the data collection was all individuals with learning disabilities who were 16 or over, who were living in placements which were not within their funding authority, and also those whose discharge from hospital was delayed. Individuals with autism but without a learning disability were not included. Data were collected in relation to the date of 31st January 2017; that is, anyone that was out-of-area or a delayed discharge on that date.
It is acknowledged that some people may be living out-of-area and that this may be appropriate for them. Respondents were therefore asked to specify the reasons for someone being out-of-area and where anything other than 'their choice or their family's choice' was selected, then this was judged to be a significant factor in identifying that these individuals may be part of a more significant subgroup, who were inappropriately out-of-area.
A follow-up filter was then applied to establish if HSCPs felt that repatriation was required for this group. Where HSCPs did indicate that repatriation was required, then the group who met both these criteria became specified as inappropriately out-of-area, and they are therefore regarded as the group who are 'priority to return'. They are the focus of attention for the main analysis in this report.
2.3 Summary of Findings
2.3.1 Out-of-Area Placements
The project found that there were 705 people out-of-area in Scotland from 30 HSCPs. This does not include one HSCP which did not participate in the project; given that this was a large HSCP, it is likely that the figures are substantially higher. 45% had been out-of-area for more than 10 years, and 23% for more than five years. Of this group, 79 people were placed out of Scotland (in England and Wales).
453 of the group were identified as being placed out-of-area not through choice, and of these, 109 were classed by their HSCP as requiring repatriation and are therefore considered to be priority to return.
The priority to return group were significantly more likely to be male than female; around 50% were autistic and 72% had moderate or severe learning disabilities.
Around 20% were reported to have a mental health diagnosis and 66% were described as currently having challenging behaviour, indicating that addressing behavioural needs is likely to be a high priority in supporting this group appropriately.
The most common challenging behaviour noted was physical aggression, followed by property destruction and verbal aggression. In relation to support for behavioural challenges, 37% were recipients of positive behavioural support (PBS), 21% were subject to physical restraint, and 44% were in receipt of as required medication to manage their behaviour.
31% were placed out-of-area in crisis, which would indicate that there is a lack of support in the community to deal with crises when these arise, and that better crisis support is required.
In relation to reasons for out-of-area placement, 77% were placed out-of-area due to lack of specialist services locally, and another 11% due to local specialist services having no capacity, indicating a significant shortage in local services able to meet people's needs.
The main barriers to repatriation were found to be a lack of suitable accommodation or lack of skilled service providers. Specifically, this related to lack of providers able to sustain support to people through periods of challenging behaviour, and how HSCP service responses support them to achieve this
2.3.2 Delayed Discharge
Data returned indicated that 67 people were delayed discharge as of the specified date of 31st January 2017. As noted above, this does not include data from one HSCP.
This group were also primarily male, and challenging behaviour was also a significant factor, with 73% displaying current challenging behaviour. 57% were identified as having been admitted to hospital due to challenging behaviour, or service breakdown in relation to challenging behaviour.
More than 22% had been in hospital for more than 10 years, and another 9% for five to ten years. The main barrier to discharge was lack of accommodation, followed by lack of suitable service providers. This relates to a range of issues, such as difficulties in commissioning, and a need for different community-based solutions.
2.3.3 Positive Behavioural Support
The project found limited evidence for use of PBS in social care settings; providers made reference to either external health professionals supporting them with PBS, or they saw this as part of the role of their physical intervention trainers. This indicates a lack of internal expertise, as those who are primarily physical intervention trainers are unlikely to have the skills and expertise required to lead on implementation of PBS.
2.4 Summary of Issues
The discharge of people with learning disabilities and complex needs from hospital and their return from out-of-area placements is a complex issue that appears to defy simple solutions. It involves complex interrelated processes, agencies, and services, all of which must work together for better outcomes for individuals. Unless all stakeholders work together, no one specific element is likely to be successful or sustainable. A transformational change approach is therefore required to address this issue throughout the sector; this will require an overall change in culture and approach.
It is clear from this report that one of the main issues for this group is the presence of challenging behaviour, and the impact that challenging behaviour has on service breakdown or hospital admission. This is in part due to a lack of coordinated or robust responses, particularly when services begin to experience difficulties in maintaining placements during periods of behavioural crisis.
It is worth emphasising that challenging behaviour is understood as a communication from the individual and as a product of the environment they live in and of the support they receive. It is not a diagnosis, and although it is associated with certain conditions and syndromes, it is not innate to the individual, but rather an expression of their unmet need.
Throughout the work of this project, an aim was to come to an understanding of what good support for people with learning disabilities and complex needs should look like. A number of key elements were identified:
- Person-centred approaches
- Environments which support communication
- Active support and full lives
- Positive behavioural support
- Suitable accommodation
- Skilled and motivated staff
- Good management and practice leadership
2.5 Conclusions and Recommendations
The conclusions and recommendations identified in this report should be viewed in the context of a human rights approach and in line with the following principles:
- Maximising choice and control
- Prevention and early intervention
- A whole life approach
Recommendations are grouped under three key themes: the first five recommendations are for Integrated Authorities/Health and Social Care Partnerships, and the remaining recommendations are for the Scottish Government.
2.5.1 Theme One: Strengthening Community Services
Recommendation 1: Develop options for access to crisis services for people with learning disabilities and complex needs, with a view to providing direct support to service provider or family placements which are at risk of breakdown.
Recommendation 2: Consider the role of flexible support responses, to be used when placements are experiencing significant difficulty. The need for this should be informed by the use of risk registers to identify individuals at risk of out-of-area or hospital placement.
Recommendation 3: Ensure that greater consideration is given to family support for the family carers of people with learning disabilities and complex needs.
2.5.2 Theme Two: Developing Commissioning and Service Planning
Recommendation 4: Take a more proactive approach to planning and commissioning services. This should include working with children's services and transitions teams; the use of co-production and person-centred approaches to commissioning; and HSCPs working together to jointly commission services.
Recommendation 5: Identify suitable housing options for this group and link commissioning plans with housing plans locally.
2.5.3 Theme Three: Workforce Development in Positive Behavioural Support
Recommendation 6: The Scottish Government should seek partnership with a university to provide PBS training across the health and social care workforce in relation to people with learning disabilities and complex needs.
Recommendation 7: The Scottish Government should support the establishment of a PBS Community of Practice.
Email: Jacqueline Campbell