6 Summary of Issues
6.1 The Need for Transformational Change
The group described in this report are people with the most complex and challenging needs. They are numerically a small group, but with very specific and significant support needs. They are also a relatively well-known group within local services and within Health and Social Care Partnerships, and historically have proved a challenge for services to support well. There is need for a rethink about how we provide effective support, and, in particular, for more cross-policy, cross-authority, and whole-lifespan approaches.
Although small in number, their support is often expensive, but frequently does not demonstrate good value for money in terms of individuals' quality of life or in terms of any impact on their personal outcomes. At the moment there is money, often large amounts, spent on their support, and no one doubts that there are good intentions to provide the best support; however, there is a lack of coherent strategy to effectively address the support needs of this group.
Nationally, the discharge of people with learning disabilities and complex needs from hospital and their return from out-of-area placements is an issue that defies simple solutions. It involves complex interrelated processes, agencies, and services, all of which must work together to change outcomes. 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. Transformational change involves a change of attitude and culture, a new belief in what is possible, resulting in significant changes in structures and systems. This type of change is what is required to address this problem; it will include a change in relationships and a shift in mindsets from all involved. Within this context, strong, determined and effective local leadership will be key, to provide a clear vision of the change that is possible.
6.2 Specific Themes Arising from the Data
6.2.1 Support for Challenging Behaviour
It is clear from all of the information in this report that one of the main issues for this group is the presence of challenging behaviour and the impact challenging behaviour has on service breakdown or hospital admission. It is worth emphasising that challenging behaviour is understood as a communication from the individual and as 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.
In the delayed discharge group, 83% had current and/or historical challenging behaviour, and challenging behaviour was reported to be the reason for 57% of admissions. In the out-of-area group who were priority to return, 82% had current and/or historical challenging behaviour; these figures increase when considering people who are also autistic. Individuals with learning disabilities who have challenging behaviour therefore make up a significant percentage of those who are priority to return or who are delayed in hospital. This indicates that this is a specifically challenging behaviour focused issue, and that improving support for this group must have a significant emphasis on addressing challenging behaviour.
The implication from this is that effective and appropriate methods must be adopted across the sector in order to support individuals who have challenging behaviours. Positive Behavioural Support (PBS) is regarded as best practice in this area, but this report has found that PBS is not routinely used across social care settings, and in fact many social providers have no skills or expertise in PBS. This means that for both service providers and for family carers it is necessary to build better skills and resilience in dealing with challenging behaviour, and to develop expertise in PBS. As the majority of adults with learning disabilities in Scotland now live in the community, it is likely that a significant focus for developing these improved behavioural skills, must be on social care providers, as they are the key support agents for people with learning disabilities and complex needs.
The fact that challenging behaviour is such a significant factor also points to the need for earlier intervention with young people with learning disabilities who are at risk of developing challenging behaviour. In both the delayed discharge and out-of-area groups, over 80% of individuals had historical challenging behaviour, meaning that these are very likely to be individuals who would have benefited from early intervention around their behavioural support needs.
Finally, the fact that challenging behaviour is such a key issue, means that there is a need for effective and timely access to expert intervention, both to prevent crisis, and to help deal with crises when these arise.
6.2.2 Support for Autism
Although this report is focused on learning disability and is framed in a learning disability context, it is clear that coexisting autism is a significant factor. Data show that nearly half of the priority to return group, and over a third of the delayed discharge group were autistic, and that those who were autistic were more likely to have challenging behaviour, more likely to be placed out-of-area in crisis, and likely to be in more expensive placements. Individuals with both a learning disability and autism can therefore be regarded as those for whom there is the most pressing need to provide more effective support.
6.2.3 Lack of Local Services
The data showed that 77% of the group who were priority to return were placed out-of-area due to lack of specialist services locally, either because these did not exist or had no capacity. This indicates a lack of local provision for people with challenging behaviours. It may be that in times of crisis, or when services are required at short notice, HSCPs find it easier to move the person than to develop new services locally, perhaps because these situations usually occur in very small numbers per year and one person at a time. The longer-term impact of using out-of-area placements is that local specialist services are not developed, resulting in a vicious circle of out-of-area placements.
Cross authority or regional commissioning would potentially help address this issue; there is also a need to have a focus on longer-term planning in relation to commissioning for this group.
6.2.4 Support for Family Carers
Support for family carers in relation to people with complex needs is not sufficient, and in some areas is felt to be significantly lacking. Family carers reported both a lack of direct support services for their family member, particularly in times of crisis, and also a lack of support to them as carers, particularly in relation to access to specialist behavioural training, advice and guidance. This is not a new finding, as a range of research over the years (for example Wodehouse & McGill, 2009) has demonstrated that family carers report problems in accessing services, lack of respite provision, exclusion from services, and ineffective strategies in dealing with challenging behaviour. All of these have also been noted as factors in the feedback from family carers during this project.
6.3 What Makes Good Support
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. To this end, a range of conversations took place with stakeholders, both professionals and families; good practice guidance from a range of sources was reviewed; and research evidence was considered, in order to take an evidence-based approach.
The result was the identifying of a number of key elements which are essential in providing good quality support for this group, and these are described below.
6.3.1 A Person-centred Approach
All support provided to people with learning disabilities should be person-centred, in order to most effectively meet a person's outcomes and provide them with the life choices and opportunities that they wish. This imperative becomes even more important when considering the group which is the focus of this report. Due to their additional support needs and often challenging behaviours, people with learning disabilities and complex needs have very specific support requirements which will make it even more important for services to be truly person-centred. For example in the need to adopt a range of communication methods, rather than utilising mainly verbal or written communication; or in the designing of bespoke environments that can best meet the person's individual sensory needs, rather than just using available housing stock.
6.3.2 Environments which Support Communication
Challenging behaviour is best understood as a means of communication, a method for the individual to communicate their needs and attempt to have them met. Given that challenging behaviour is such an issue for this group, communication must therefore be a key element of the solution. The use of a range of augmentative and alternative communication strategies are essential in providing good quality support. For example, Board Maker is a visual communication system using pictorial symbols; Talking Mats is an interactive resource, that aims to improve the lives of people with learning disabilities by increasing their capacity to communicate effectively about things that matter to them; and the Picture Exchange Communication System (PECS), is a communication aid which teaches the learner to communicate within a social context.
6.3.3 Active Support and Full Lives
Active Support is fundamental to providing effective person-centred support for people with learning disabilities and complex needs. It has a focus on ensuring that people are involved in all aspects of their own lives and that support starts from the premise that regardless of level of difficulty, disability or challenging behaviour, people can and should be supported to be involved fully in their day to day lives. A range of research has been carried out to demonstrate its effectiveness in providing better support and improving quality of life for people with learning disabilities (Mansell and Beadle-Brown, 2012).
6.3.4 Positive Behavioural Support
This report has already commented on the research to evidence the effectiveness of PBS in supporting people with complex needs and challenging behaviours. A comprehensive and person-centred PBS plan is therefore an essential element of good quality support, in order to understand the communicative function behind the behaviour and to outline the proactive strategies to support the person in relation to this. This plan should also contain specific reactive strategies to most safely and effectively support the person when challenging or high-risk behaviours do occur.
6.3.5 Suitable Accommodation
Feedback within this report has indicated that lack of appropriate accommodation is a key factor in the lack of local services for people with complex needs, leading to the use of both hospital and out-of-area placements. For some individuals with complex needs, specialist or bespoke housing may be required. For example, if an individual has particular challenges around property destruction, or if in times of distress, an individual becomes extremely noisy, the use of ordinary housing may be difficult. However, for others, with different types of support needs, it will be possible to adapt ordinary housing to meet their needs appropriately.
Overall, it is clear that developing suitable environments that can meet the needs of this group is an essential element to getting support right. People with very complex and challenging needs, and particularly those with autism, require specific environments which are likely to include aspects of the following:
- An environment which keeps the person safe, particularly a secure outdoor space.
- Significant outdoor space, with potential for outdoor activity and sensory stimulation through physical activity.
- Potential for flexible use of the environment, for example, ability to shut down certain areas, or to allow staff to withdraw and leave the person in a safe space during a challenging incident.
- Environmental adaptations to meet people's needs where sensory integration issues are present.
- Homes with rooms that are bigger than average and allow for safe management of behaviour, including the potential for safe use of restraint if required.
- Services with the capacity for staff space, including the potential for onsite staff support (supervision, debriefing, on-the-job training).
- Homes which are sufficiently linked to the local community, in order to ensure the opportunity for use of ordinary local resources, and also to ensure local availability of sufficient staff.
6.3.6 Skilled and Motivated Staff
Essential in providing good support is having a skilled, motivated and enthusiastic staff team, who have a commitment to the work that they do, and who enjoy working with individuals with complex needs. The ability to see beyond any complex needs to the person themselves is essential, as is the ability to have a degree of empathy and understanding.
Staff are required to have an understanding that challenging behaviour serves a function for the individual and is communicating a need. Staff with knowledge about autism, particularly in terms of how it impacts people and the type of supports that might be required, would also be helpful.
Supporting people with learning disabilities and complex needs is a skilled role, which can be challenging; staff therefore need to be well trained and well supported, and pay scales should reflect the importance of the work they do.
6.3.7 Good Management and Practice Leadership
For any staff team to be effective, they must be supported by skilled managers who motivate their team and provide clear leadership. Within complex needs work in particular, practice leadership is important. Practice leadership is defined as the use of observational monitoring, intensive and regular observation of staff practice, and the use of role-modelling, mentoring, and feedback to staff on a regular basis.
It has been associated with better outcomes for individuals with learning disabilities, for example, increased engagement, and with better support to staff, lower levels of staff stress and more positive work experiences (Mansell & Beadle-Brown, 2012), and is widely regarded as a useful model for services for people with complex needs which require a more significant direct management and leadership presence than may be needed in other services.
Good management also involves providing attention to staff's needs via supervision and post-incident debriefing, thus encouraging reflective practice and emotional support to staff.
Email: Jacqueline Campbell