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ON THE BORDERLINE?
PEOPLE WITH LEARNING DISABILITIES AND/OR AUTISTIC SPECTRUM DISORDERS IN SECURE, FORENSIC AND OTHER SPECIALIST SETTINGS
CHAPTER TEN CONCLUSIONS
INTRODUCTION
10.1 The different secure environments included in the study have different objectives, or at least a different balance of objectives. They also differ in terms of: the age profiles of the people referred; the nature of the impairment; and the resources or interventions to which they have access. In a number of other ways the approaches these environments adopt to support people, and the problems they face in doing so are not dissimilar.
10.2 Across the different settings, services clearly strive to meet the needs of this group of people: adapting and tailoring services as far as possible. There is evidence of joint working across disciplines at the point of assessment, in service provision and planning for the future. In secure settings for adults, however, this may be limited to those disciplines and agencies 'on site'. Outwith the specialist in-patient units for people with learning disabilities, the involvement of specialists in learning disabilities was the exception rather than the rule, and across all types of unit the involvement of people with expertise in ASD was even rarer.
10.3 The common problems experienced relate to: levels of awareness of learning disabilities and ASD in non healthcare settings; information sharing; of having the resources, such as time, to provide the level of intensive input that some individuals are felt to require; the limits of adaptability in relation to programmes and other interventions; and the limited resources to enable individuals to move on, or to move on with the appropriate level of on-going support. The different environments, including the health care settings, were also aware of the vulnerability of some of this group of people and would seek to protect people who were at risk of being bullied, made fun of, exploited or manipulated or of being abused.
10.4 Although, for illustrative purposes only, chapter 9 sets out a number of notional outcomes, what the study is unable to determine are the actual outcomes for individuals of being identified, or not, as having a learning disability and/or ASD. Certain questions are raised in terms of equity, efficiency and effectiveness. For example, do people with learning disabilities and/or ASD in different types of secure setting have the same opportunities to access specialist resources? Do they have the same opportunities to access these resources as people in the community? Are adapted services as effective for individuals as those that are specifically designed to meet their needs? A more detailed understanding of non-financial (and financial) costs, benefits and outcomes for individuals and for services would be required before these questions can be answered. Nonetheless, the study does suggest action that can be considered at a number of levels.
BRINGING PEOPLE IN FROM THE BORDERLINE
Implications for policy
10.5 There are a number of different policy domains that can touch upon the lives of this group of people to a greater or lesser extent. These include not just health, community care, children's services and education, but also the criminal justice system, in particular SPS, and also other services such as housing. To encourage coherence and consistency of service response there may be scope for greater integration between the different policy initiatives as they affect people with learning disabilities and/or ASD in secure settings. The purpose would not be to create a new or overarching policy, but to make more explicit and clarify the roles and responsibilities of different agencies at national, regional and local levels towards this group of people.
10.6 This enhanced policy coherence and consistency of application across different secure settings may help to further ensure that this group of children, young people and adults, who come within the ambit of The same as you? (Scottish Executive, 2000), also benefit from the principles and processes that the policy sets out. This may also serve to raise awareness, and give a 'name' or identity, to this group of people across the different secure environments. Raising the profile (in a positive sense) may yield dividends in terms of identification at the level of practice.
Service planning issues
10.7 Although the study was charged with enumerating the numbers of people in secure settings, the method specified was more successful in illustrating the problems of identification than in estimating prevalence. It is suggested that there is a need to consider systematic assessments of a sample population using validated methods. This has particular applicability for people with learning disabilities in the context of prisons and secure accommodation, but applies across the board in relation to people with ASD.
10.8 The current study focused on just one point in the pathway, but secure settings are part of a larger system. Although outwith the scope of this study, the findings do raise issues relating to early identification, pre-secure care, including, for example, the role of SERs. This is not just about awareness raising, but also about considering the availability of appropriate alternative, non-custodial disposals. Further consideration could be given to the role and availability of diversion schemes for people with learning disabilities and/or ASD who come into contact with the criminal justice system.
10.9 The Care Pathways Framework (NHS HDL (2001) 9) requires local areas to indicate progress in meeting the policy for mentally disordered offenders. Although planning and service development issues are also beyond the remit of the study, the findings, both in terms of the numbers of people, and the complexity of needs they present, may suggest that some services require to be planned and commissioned on a regional or even a national basis. Planning and commissioning would also need to be tied in to the proposed national forensic managed care network. As part of ensuring on-going responsibility for this group of people there may also be a value in encouraging secure settings to link in to other appropriate planning networks at local level including, for example, partnership in practice agreements.
10.10 At service level, the data suggest that secure settings are not necessarily linked into other networks which could help improve awareness and encourage greater service integration. For people with Autistic Spectrum Disorders, for example, secure settings could consider linking in with initiatives such as the Scottish Service Network for Autistic Spectrum Disorders.
10.11 From the evidence of the study it does not appear that the responsibilities of local area co-ordinators, whose role in managing and co-ordinating the care of people with a learning disability and/or ASD is described in The same as you? (Scottish Executive, 2000) extend to people in secure settings. If their role were to encompass this group of people this might enhance the scope for on-going responsibility and support beyond the secure environment.
Practice issues for secure environments
10.12 A key practice issue is awareness raising among health care, social work, education, social care and security staff, of the possibility of learning disability and/or ASD as an explanation for possible behaviours. This does not imply that everyone becomes an expert in learning disabilities and/or ASD, but that before labelling someone as a "difficult prisoner" or as having "challenging behaviour" they are sensitised to considering other options and routes for referring people on.
10.13 There are currently no routine screening systems for beginning the process of identification, particularly in non-health care settings. Clearly routine screening carries its own risks of false positives and false negatives. There are also ethical dimensions to consider, together with the short term and life-long implications of informing someone in prison, for example, that they may have a learning disability or ASD. There may, however, be scope for more selective screening, where an individual's behaviour is raising concerns. Consideration could be given to the development of simple screening tools for use by non-specialists, such as that developed and described by Hayes (2002). This tool is not intended to diagnose the presence of a learning disability but to identify people who may require further diagnostic assessment.
10.14 There may be greater scope for using existing routes, for example Learning Centres in prisons already screen for adult basic education needs. Teaching staff also have an expertise which could inform early identification. This, however, requires a way of linking the different professions so that education, social work, health centre staff and security staff can co-ordinate and feed in their concerns. Within the secure accommodation units and the State Hospital this is already happening, and not just for people with a learning disability and/or ASD. In the prisons this happens in relation to people who are at risk of suicide or self-harm, or have a mental health problem. While the potentially small number involved does not necessitate replicating, for example, the prison mental health teams, there may be an argument for formalising the role of these teams as a point of co-ordination for this group of people.
10.15 There are also issues around ensuring that any information that suggests the individual does have a learning disability and/or ASD, is appropriately shared with the relevant professionals within the secure setting. Existing models for information sharing, for example those being developed in the context of the Joint Future policy (Scottish Executive, 2000), may help to establish protocols for sharing confidential information.
10.16 Systems of screening need to be supported by access to specialist resources, including speech and language therapy, to assist to identify, assess or diagnose people as well as provide or advise on treatment and support. At present, outwith the healthcare units, few secure environments have routes to learning disabilities services. Although again recommended in the Care Pathways Framework, there may still be scope for clarifying the local care pathways to these services. Specifically in relation to speech and language therapy, the recommendations of the Scottish Executive Review of Speech and Language Therapy (Scottish Executive, 2003) may provide an opportunity for NHS Boards to explore access arrangements to these services by people with learning disabilities and/or ASD in secure settings.
10.17 Single shared assessment as a concept is only beginning to infiltrate some of the health care settings, and is not part of the language of the other secure environments. If, as a model, it is felt to be a more efficient and effective way of working, then there may be scope for considering its applicability and feasibility across the range of secure settings. Nationally this would need to be addressed with SPS, local authorities and the Charitable Trusts responsible for some of the secure accommodation for children.
10.18 There are clearly perceived resource issues relating to service provision both within and outwith the secure environments. These are described in chapter 7. Although not resolving difficulties which need to be addressed on a system wide level, at the level of individual units there may be scope for considering greater input by specialists in learning disabilities, not just as providers but as a resource to advise staff within the secure units. Prisons are familiar with using external agencies to provide services to people within prison. One of the secure accommodation units also described a mental health awareness project that was being provided by an external voluntary agency. It is therefore not such a novel idea to make similar arrangements, where practicable, for people with learning disabilities and/or ASD. This could include not just health care providers, but voluntary organisations that have a specialist knowledge and expertise of working with people with ASD and learning disabilities.
10.19 The availability of resources was also raised as an issue in the context of throughcare and after care planning. Greater involvement by services from outwith the secure environment, although not the whole answer may help to link individuals into networks that will assist throughcare and after care planning and implementation.
10.20 The same as you? (Scottish Executive, 2000) recommends that everyone who has a learning disability should have a Personal Life Plan if they want one. If 'everyone' includes people in a secure setting who have been identified as having a learning disability and/or ASD, then consideration may need to be given to how this can be adapted and implemented.
10.21 The evidence from the study suggests that, within the individual prisons and secure accommodation units, no one post or professional is identified as having responsibility for issues relating to learning disabilities and/or ASD. To help to increase awareness and improve early identification and service response consideration could be given to identifying a key professional at unit level to champion the interests of people with learning disabilities and/or ASD, analogous to the role of the teacher designated to champion the interests of Looked After Children (Scottish Executive, 2001). This was already under consideration in one prison which was planning to use one of its RMHN's as a 'key nurse' in this area. This person could function as a resource within the prison.
Areas for further research
10.22 In addition to a more accurate assessment of the numbers of people with learning disabilities and/or ASD in secure settings, the literature review, described in Chapter 1, and the quantitative and qualitative data collected in the course of the study have highlighted 7 areas where further research may help to inform future service development.
- The literature review found little evidence relating to the numbers and needs of children, young people and adults with ASD who offend or engage in offending behaviour. The difficulties experienced across all settings in the study, both in identifying and meeting the needs of people with ASD suggests scope for further research. This could address not just the numbers of people with ASD in secure settings, but also their routes into these environments, the nature of their offending behaviour, early identification and the specific support needs of this group of people.
- Although the study was only able to identify a small number of children and young people with learning disabilities and/or ASD in secure accommodation, the high proportion of the sample of adults who had been looked after children suggests an area that needs further investigation. Retrospective or longitudinal research could be undertaken to track the pathways of looked after children and young people with learning disabilities and/or ASD to identify the key factors influential on admission to secure settings.
- The literature review found little material comparing the experiences of men and women in secure settings with learning disabilities and/or ASD. The research sample comprised too few women in each of the settings to enable meaningful comparisons. To inform appropriate and gender sensitive service development it is suggested that further evidence is collected comparing the experiences of, and the routes to secure care for men and for women with learning disabilities and/or ASD.
- Neither the literature reviewed, nor the research sample generated evidence to illustrate the experiences of people with learning disabilities and/or ASD from minority ethnic communities who offend or engage in offending behaviour. Exploratory research may be considered to identify issues relating to, for example, early identification, assessment of need, and culturally competent service responses.
- The literature review suggests that the responses to people with learning disabilities and/or ASD who engage in offending behaviours will depend on the context in which the behaviour occurs and whether or not they are known to services. As a result some people will be processed through a criminal justice route, others will be admitted under mental health legislation. Further, people with learning disabilities and/or ASD in secure health care settings will include both offenders (i.e. people who have been charged and sentenced for an offence) and non-offenders. The study suggests there is scope for further in-depth research to obtain a better understanding of the different factors that influence the routes to different secure settings and the subsequent outcomes for people with learning disabilities and/or ASD.
- The focus for the study was largely on issues of process. The research sample however reveals that some people have long histories of institutional care. This suggests that, to break the 'cycles of security' into which some people become fixed, more evidence is needed on the longer term outcomes for people with learning disabilities and/or ASD in secure settings. In addition more needs to be known about the outcomes for the families and informal carers of this group of people.
- Many of the studies reviewed were largely quantitative in approach: the voices of people with learning disabilities and/or ASD and the people who care for and about them are rarely heard. To address the research questions raised by the study there is scope to use more qualitative methodologies - approaches which draw on the experiences and perceptions of people with learning disabilities and/or ASD in secure settings, and that of their families or informal carers.
10.23 The aims of the study were to establish the prevalence of people with learning disabilities and/or ASD in secure settings, the means by which they are identified and their needs assessed and met. The approach adopted for assessing prevalence illustrated the difficulties of identifying people with learning disabilities and/or ASD in these settings, but also meant that it was not possible to accurately assess the numbers in each type of environment. What the study has however yielded is evidence of the complex nature of the needs of this group of people, and the challenges they pose for policy implementation, planning, service delivery and practice.
KEY POINTS
Policy implications
- At policy level it is suggested that there is scope for linking the different policy initiatives as they impact upon people with learning disabilities and/or ASD in secure settings
Planning implications
- In service planning terms secure environments could be linked in to appropriate planning and development networks for people with learning disabilities and/or ASD
- Local area co-ordinators may also have a role in managing and co-ordinating the care of people with learning disabilities and/or ASD in secure environments
Practice implications
- In practice terms there is scope for raising awareness about people with learning disabilities and/or ASD across the different disciplines in non-healthcare settings, including health, social work, social care, education and security staff
- Consideration could be given to the development of a screening tool for use in non-healthcare settings
- There is scope for greater co-ordination of information and assessment, particularly within prison environments. Consideration could be given to introducing a single shared assessment model within secure settings
- Perceived resource constraints were described. These related to the capacity to provide appropriate services within secure environments and to the resources available outwith these settings to provide after care
- There may be scope for greater involvement of, and integration with, specialists in learning disabilities and ASD - statutory and voluntary/independent - not just as service providers, but in an advisory capacity. This includes access to Speech and Language Therapists
- The feasibility of people with learning disability and/or ASD in secure environments having the opportunity to have a personal life plan could be considered
- Within each unit there may be a value in identifying a key person with responsibility for issues relating to learning disability and/or ASD. This could, for example, be a RMHN in a prison, or a designated teacher in a secure accommodation unit
- A number of areas for further research are identified which could assist policy, service and practice development
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