6.1.1. Transition

Most people with a learning disability rely on others, including families, friends, formal and informal carers and a range of professionals to provide care throughout their lives, especially at times of substantial change. Some transitions (for example, moving to a new school or to more independent living), can be a very positive experience but may nonetheless present a significant challenge. Where moves are not desired by the person, or are brought about because of a sudden change in personal circumstances (for example, a change in health status of either the person themselves or their carer), the challenge can be even greater. Transitions may occur in a planned way, as a result of the natural aging process (such as moving from children's services to adult services), or may happen in a reactive, unplanned way (for example, when an established placement breaks down and a new one is sought). Finding the right services and support for a person with a learning disability and behaviour that challenges can be a difficult process. Often a large number of assessments will be undertaken to inform the decision making as well as knowledge and views sought from both the person concerned and their immediate family. Opinions of those involved may differ, making the choice of services and support, and the development of a support plan, a delicate and complex process.

Whatever the reason for a transition across or between services, the challenge for commissioners and service providers is to manage the period of change in such a way as to minimise anxiety and uncertainty for those involved. Arguably a period of transition is one of the most testing times both for services and for the people who use those services. In addition to identifying the needs of the person, other important considerations include the allocation to, and use of, particular funding streams, availability and suitability of any given placement, the training and experience of staff members, the resources of carers and the continuity of care across the transition. Often what has sustained the person previously cannot be replicated, leading to a period of significant change, with all of the challenges commensurate with that. It is not surprising, therefore, that the incidence of challenging behaviour is higher during adolescence when child-adult service transition takes place.

Staff involved in transition, and care delivery in general, can make a significant contribution to the success of a given placement and help maintain an element of stability in a period of transition. The established skills, experience and training of staff and carers will have a great impact.

6.1.3. Training

There is growing evidence of a correlation between better outcomes and understanding the person with behaviour that challenges, the function of their behaviour and also how particular approaches and techniques may be applied. In general, such approaches relate to the development of whole service approaches that may then be personalised to the needs of the individual.

However, the majority of staff (59%) involved in the care of people with a learning disability, have no formal professional training. Along with the relatively high turnover of staff, this represents a source of considerable concern in the provision of high-quality services for people with a learning disability and behaviour that challenges. This is because such people are often in receipt of support from staff in residential settings where levels of training may be lower than those of staff working in community teams and other specialist services (Bamford, 2007).

Training of staff is highly dependent on the circumstances of the individual service user's support setting. Some support organisations place great emphases on ensuring staff have regular and relevant accredited and professional training. However, at the other end of the spectrum some support services rely on ‘on-the- job’ staff coaching, often by individuals who themselves may have received little formal training.

Many families and carers report being left to acquire knowledge and information entirely unsupported and often learning lessons ‘the hard way’. Learning ‘the hard way’ can mean unwittingly reinforcing behaviour that challenges, which can lead to inappropriate and costly interventions.

Past scandals involving the abuse of people who display behaviour that challenges invariably cite training as a key issue and recommend investment in it. This does not appear to be sustained in any meaningful way, at least in so far as front-line staff and carers are concerned. In the light of the enquiry into Winterbourne View Hospital, there is recognition of improving services through training both as a way of improving people's quality of life and reducing the risk that inexperienced or uninformed staff will accept abusive and dehumanising treatment as acceptable.

6.2.1. Clinical evidence

No RCTs or systematic reviews met the eligibility criteria for this review. Further information about the excluded studies can be found in Appendix Q.

The GDG noted the lack of high-quality evidence in this area and the limitations of existing studies (see Appendix Q) which were almost entirely descriptive in nature and tended to be focused on transition from child and adolescent health, education or social care services to adult services. The relevance of this literature was further limited by the fact that much of the current descriptive data were concerned with children with a range of disabilities and were often not specifically concerned with learning disabilities or with behaviour that challenges. Even less relevant literature on adults was identified.

In the absence of high-quality evidence the GDG considered whether to make any recommendations at all in this area. They drew on their expert knowledge in the area and the very considerable concerns that they had about the nature of transition between services (which they believed were shared by many professionals in the field). It was the GDG's experience that current transitions were poorly planned, lacked proper oversight and often led to inappropriate and costly placements. The GDG took the view that recommendations elsewhere in this guideline, for example on assessment, could make a significant contribution to addressing these problems, but that specific recommendations setting out the key principles that should underpin the proper organisation of transitions between and within services could have real value in improving the care and support of people with a learning disability and behaviour that challenges.

The GDG also noted that a similar problem had arisen in the development of another guideline: Autism: Recognition, referral, diagnosis and management of adults on the autism spectrum (NICE, 2012a). The autism guideline was concerned with the development of care pathways for adults with autism, including, but going beyond, issues concerned with transition between services. In developing the recommendations in that area the GDG for the autism guideline had drawn on the evidence and recommendations in the Common Mental Health Disorders guideline (NICE, 2011). The GDG for this guideline on behaviour that challenges and learning disabilities decided to adopt the same method (outlined in Chapter 3) but with a somewhat narrower focus (that is, on the development of recommendations that would support more effective transition between services). In order to do this, the GDG first compiled a list of recommendations from the Common Mental Health Disorders guideline that could potentially be included in this current guideline – 22 in total (see Table 24). The underlying evidence is described fully in Chapter 7 of Common Mental Health Disorders (NCCMH, 2011). The GDG also considered the review of the evidence in Chapter 4 on the experience of care of people with a learning disability and their families and carers. From the list of 22 recommendations, the GDG then selected 6 that they judged were important to improve transitions between services for people with a learning disability and behaviour that challenges (see Table 25). The GDG made some minor adaptations to the 6 selected recommendations to ensure that they were relevant to the current context. The detail of the adaptations and the rationale for them are presented in Table 26, along with a summary of the underlying evidence.

Table 24

Initial list of potential recommendations from the Common Mental Health Disorders guideline for inclusion.

Table 25

Revised list of recommendations from the Common Mental Health Disorders guideline to be included.

Table 26

Final list of recommendations from the Common Mental Health Disorders guideline after adaptation.

6.2.2. Economic evidence

No studies assessing the cost effectiveness of models for transition between services for people with a learning disability and behaviour that challenges were identified by the systematic search of the economic literature undertaken for this guideline. Details on the methods used for the systematic search of the economic literature are described in Chapter 3.

Nevertheless, 2 UK studies were identified that provided information on costs associated with transition to adult services for young people with a learning disability and behaviour that challenges (Barron et al., 2013) and for young people with a disability and complex health needs (Sloper et al., 2010). Although these studies do not meet inclusion criteria for this review as none of them assess the cost effectiveness of models of transition, they do offer an insight into the types of costs associated with the period of transition of young people with a learning disability and behaviour that challenges to adult services and thus are briefly described in this section.

Barron and colleagues (2013) conducted a survey of all young people aged 16 to 18 years with a learning disability and behaviour that challenges who were in transition to adult services between 2006 and 2008 in one London borough. The survey identified 59 young people who were suitable for adult community learning disability services, of which 36 were identified as having behaviour that challenges; 27 of them agreed to take part in the study. At the time of the interview, the participants' mean Challenging Behaviour Checklist (CBC) score was 16.8 (sd 11.1; range 0-36); 3 individuals scored zero and 15 had a CBC score of 17 or more. Eighteen individuals showed 2 or more types of behaviour that challenges. The types of behaviour that were recorded included self-injury, harm to others and destruction to property. The cost elements measured in the survey included daytime activities (day centre, social club, drop-in centre, adult education), education (special needs and mainstream day school, residential school), hospital-based services (inpatient, outpatient, emergency department), community-based services (for example, provided by a GP, psychiatrist, psychologist, community psychiatric nurse, social worker, speech and language therapist, occupational therapist or art therapist, including home care), police and informal care. The mean weekly cost per young person in transition was estimated at £2543 (2009 prices), attributed mainly to informal care (65% of total costs) and education (22% of total costs). The authors reported that individuals' access to services showed wide variation in terms of number and type of services used, with lack of access to community specialist nursing and employment services being notable. Individuals with higher levels of behaviour that challenges (as measured by the CBC score) or more complex needs (indicated by the total number of coexisting mental and physical health diagnoses) were not found to be in receipt of higher-cost care packages; the only clinical parameter linked to the cost of care was the level of learning disability.

Sloper and colleagues (2010) conducted a national survey of multi-agency coordinated transition services for disabled young people and their families. The aim of the study was to investigate arrangements across local authority areas in England for multiagency assessment for, planning of and actual transfer from child to adult services for young people with disabilities or complex health needs, compare the implementation and operation of different models of transition services, assess outcomes for parents and young people, and also investigate sources of funding and costs of different models of transition services. Of the 34 transition services participating in the survey, 16 provided sufficient data on whole-time equivalent composition of their teams, their professions and employing organisations that allowed estimation of staffing costs (that is, salary costs of transition workers and managers). Based on this information, the mean annual cost per young person supported by a transition team was estimated at £1483 (2007/8 prices), ranging from £490 (at a service supporting 220 people) to £3190 (at a service supporting 34 people). These figures do not include costs of clerical and administrative support, office-related costs, travel costs, client-related service costs, building costs and overheads.

In addition, a detailed study on 5 multi-agency coordinated transition services for disabled young people and their families was undertaken, focusing on young people in special schools with a severe learning disability. The 5 services encompassed different models of working and had key differences in terms of coordinating services and transition teams. The mean annual cost per person supported ranged from £395 (at a service covering 2 urban centres and surrounding villages and supporting 72 people at the time of the study) to £3545 (at a service covering an outer London borough and supporting 76 people at the time of the study). Costs were driven by the professional mix in the transition team and the costs of employing those professionals.

The study also reported service costs for young people who were in the process of transition planning but had not yet transferred to adult services (pre-transition sample, N = 105), and those who had transferred within the last 2 years and had received the transition service (post-transition sample, N = 23). The 3-month service cost per person pre- and post-transition was £6259 and £5047, respectively; residential services (including both education and accommodation) accounted for 84% of this cost, with remaining costs incurred by hospital and community health services (10%) and other social care services (6%).

6.2.3. Clinical evidence statements

No clinical evidence pertaining to people with a learning disability and behaviour that challenges was identified for this review.

The GDG therefore drew from 2 other evidence sources in developing the recommendations in this section: the Common Mental Health Disorders guideline (because this guideline developed a set of principles for the development of care pathways in the field of mental health) and the review of the evidence in Chapter 4 on experience of care. The GDG considered these 2 evidence sources and identified and adapted a number of recommendations that in their view were important in improving transitions for people with a learning disability and behaviour that challenges.

6.2.4. Economic evidence statements

There is evidence that young people with a learning disability and behaviour that challenges in transition to adult services incur considerable costs associated mainly with informal care and residential service use, and in a lesser degree with health and other social service use. There is wide variation in the cost of transition services per supported person across the UK, which is driven by the professional mix in the transition team and the coordination of services. However, there is no evidence on the cost effectiveness of different models of transition for people with a learning disability and behaviour that challenges.

6.2.5. Recommendations and link to evidence

See section 6.4 for recommendations and link to evidence relating to this section.

6.3.1. Clinical evidence

No RCTs met the eligibility criteria for this review. The GDG therefore selected an existing systematic review of non-randomised studies as the basis for this section of the guideline: Macdonald 2013 (MacDonald & McGill, 2013). The systematic review included 14 studies: Baker 1998 (Baker, 1998), Browning-Wright 2007 (Browning-Wright et al., 2007), Crates 2012 (Crates & Spicer, 2012), Dench 2005 (Dench, 2005), Freeman 2005 (Freeman et al., 2005), Gore 2011 (Gore & Umizawa, 2011), Grey 2007 (Grey & McClean, 2007), Kraemer 2008 (Kraemer et al., 2008), Lowe 2007 (Lowe et al., 2007b), McClean 2005 (McClean et al., 2005), McClean 2012 (McClean & Grey, 2012), McGill 2007 (McGill et al., 2007), Reid 2003 (Reid et al., 2003) and Reynolds 2011 (Reynolds et al., 2011). Although the systematic review allowed for any type of study design, all included studies were repeated measures. A summary of the included review can be found in Table 28.

Table 28

Study information table for the systematic review included in the review of training and education programmes.

All included studies were published in peer-reviewed journals between 1998 and 2012 and specifically involved training in PBS. Of the 14 included studies, 4 were from Ireland, 5 from the USA, 3 from the UK, 1 from Canada and 1 from Australia.

Six of the included studies focused on staff outcomes, 4 focused on service user outcomes and 4 focused on both staff and service user outcomes. Studies that focused only on outcomes for families and carers were excluded, although some studies that focused on staff and family/carer outcomes, as well as the other outcomes of interest, were included.

Further information about both included and excluded studies can be found in Macdonald 2013.

As a result of considerable differences between the studies, including the length of training and outcome measures used, no meta-analysis was possible. A narrative synthesis of the evidence was, therefore, applied.

6.3.2. Economic evidence

No studies assessing the cost effectiveness of training and education programmes for health and social care professionals and carers of people with a learning disability and behaviour that challenges were identified by the systematic search of the economic literature undertaken for this guideline. Details on the methods used for the systematic search of the economic literature are described in Chapter 3.

6.3.3. Clinical evidence statements

6.3.4. Economic evidence statements

There is no evidence on the cost effectiveness of training and education programmes for health and social care professionals and carers of people with a learning disability and behaviour that challenges.

6.4.1. Organising effective care

6.4.2. Understanding learning disabilities and behaviour that challenges

6.4.3. Delivering effective care

6.4.4. Staff training, supervision and support

6.4.5. Link to evidence across all topics

6.4.6. Research recommendations

1. Does providing care where people live compared with out-of-area placement lead to improvements in both the clinical and cost effectiveness of care for people with a learning disability and behaviour that challenges?
2. What factors (including service organisation and management, staff composition, training and supervision, and the content of care and support) are associated with sustained high-quality residential care for people with a learning disability and behaviour that challenges?