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ON THE BORDERLINE?
PEOPLE WITH LEARNING DISABILITIES AND/OR AUTISTIC SPECTRUM DISORDERS IN SECURE, FORENSIC AND OTHER SPECIALIST SETTINGS

CHAPTER ONE INTRODUCTION AND BACKGROUND

INTRODUCTION

1.1 The same as you? the review of services for people with learning disabilities, published in 2000, included as one of its recommendations:

The Scottish Executive should commission research into the number of people with learning disabilities in prison or in secure accommodation and the arrangements for assessing and providing them with care (Scottish Executive, 2000)

1.2 This arose from the review's concern that there was insufficient information on the numbers, needs and vulnerabilities of people with learning disabilities and/or autistic spectrum disorders (ASD) in prison and secure accommodation.

1.3 To begin to piece together a picture of the numbers of people with learning disabilities and/or Autistic Spectrum Disorders (ASD) accommodated in secure settings, the means by which they are identified, and their needs assessed and met, the Scottish Executive Health Department commissioned the 11 month study which forms the basis of this report.

1.4 For the purposes of the project secure accommodation comprises the State Hospital at Carstairs, the 16 prisons in Scotland, the 6 secure accommodation units for children and 24 secure, forensic or other specialist in-patient settings for people with learning disabilities and those for people with mental health problems.

1.5 The study was concerned with children, young people and adults with learning disabilities and those with ASD. The defining characteristics the study took as being associated with learning disabilities and with ASD are described in Annex 1. People with learning disabilities have a significant, life long condition that started before adulthood, that affected their development and which means they need help to: understand information; learn skills; and cope independently (Scottish Executive, 2000; Holland et al, 2002). The characteristics associated with ASD, including autism and Asperger's syndrome are: difficulty with understanding verbal and non-verbal communication; difficulties with social relationships and understanding social behaviour; and ritualistic behaviour or obsessional interests (Wing, 1996). Some people can have both a learning disability and ASD.

1.6 Although the study itself is set within the policy context of the review of services for people with learning disabilities, the different secure settings are shaped by other policy influences which may impact upon the ways in which they are able to respond to the needs of people with learning disabilities and/or ASD. This opening chapter begins by sketching out these different policy influences. This is followed by a summary of themes drawn from a review of literature. The literature review provides an evidence base against which to compare the research findings.

POLICY CONTEXT

1.7 The study focuses on a number of quite distinct secure settings: prisons, high secure in-patient care, specialist in-patient care for people with learning disabilities and those with mental health problems and secure accommodation for children. Each has different core objectives, or a different balance of objectives, for example, custodial, therapeutic and/or protective. The idea of a 'secure setting' is therefore, in many respects, an artificial construct. Further, the study combines a focus on both learning disabilities and ASD as well as on children, young people and adults. As a result different policy streams will be influential on the different settings and the people for whom they provide a secure environment. To begin to identify the 'bridges' between these different streams policies and initiatives have been grouped into 3 categories:

• Overarching policies and initiatives with implications for people with learning disabilities and/or ASD
• Specific policies and initiatives with implications for children and young people, including those with learning disabilities and/or ASD, who require secure accommodation
• Policies and initiatives with implications for adults with learning disabilities and/or ASD who offend or whose behaviour puts them at risk of contact with the criminal justice system

Overarching policies and initiatives with implications for people with learning disabilities and/or ASD

'Universal' policies

1.8 At a universal level, human rights legislation, disability discrimination legislation and social justice and social inclusion policies, all have implications for people with learning disabilities and/or ASD. They may take on a particular resonance in this context both while people are in secure settings and when they move on.

Mental health legislation

1.9 The current Mental Health (Scotland) Act 1984 and the Mental Health (Care and Treatment) (Scotland) Act 2003 both include learning disabilities within the definition of mental disorder. When implemented the new legislation will have implications both for people with learning disabilities and/or ASD and for services. Changes introduced by the new Act include: the extended role of Mental Health Officers, including the preparation of reports for offenders subject to a compulsion order; the capacity for individuals to challenge continued detention at a level of security they are assessed as no longer requiring; the role of the Mental Health Tribunal, including its role as an appeal mechanism for mentally disordered offenders; and the right to advocacy.

1.10 The main provisions of the new Act will become effective in April 2005. The right of appeal for patients detained in excessive security will be implemented in May 2006.

Adults with Incapacity (Scotland) Act 2000

1.11 The Adults with Incapacity (Scotland) Act 2000 (AWIA) enables decisions to be made on behalf of adults who lack the legal capacity to do so themselves due to either mental disorder or an inability to communicate. As in the case of mental health legislation 'mental disorder' includes learning disabilities. Of particular relevance in relation to people with learning disabilities and/or ASD in secure settings is part 5 of the legislation which deals with decisions relating to medical treatment and research, and part 6 which makes provision for intervention orders and guardianship orders relating to financial and/or welfare decisions. Part 6 supersedes arrangements for guardianship, tutors, and curator bonis, previously contained in the Mental Health (Scotland) Act 1984. The Criminal Procedure (Scotland) Act 1995 has also been amended to reflect the arrangements for welfare guardianship introduced by the AWIA.

1.12 Both the Mental Health (Care and Treatment) (Scotland) Act 2003 and the AWIA are based on sets of principles that encourage consideration of issues of benefit, least restrictive intervention, non-discrimination and participation. As fundamental principles they are therefore applicable to all those who come within the scope of the respective legislation, including people with learning disabilities and/or ASD in secure settings.

Reviews of services for people with learning disabilities and/or ASD

1.13 In addition to the legislative context the key policy statement, and the one which provides the framework for the study which follows is The same as you?, the review of services for people with learning disabilities published by the Scottish Executive in 2000. For the current study 3 elements of the review have particular significance. First, the 7 values and principles the review embodies. Set out in Figure 1.1, one of the questions the study raises is how these are, or can be applied in secure settings: not just health care settings, but environments such as prisons.

1.14 Second, the inclusion in the review of both people with learning disabilities and those with ASD as well as children and adults. The inclusion of children implies that secure accommodation comes within the remit of the policy. The inclusion of people with ASD is particular salient in environments where this group of people may comprise a minority within a minority.

1.15 Third, a number of the specific recommendations made in the review are of particular relevance. The recommendation to close long stay hospitals for people with learning disabilities by 2005 has a number of implications. As discussed in chapter 7, the prisons felt that hospital retraction had meant that in the apparent absence of alternative forms of support prison had become the only option for some people. For people in hospital who have been assessed as continuing to need 24-hour supervision in a secure environment the data suggest that retraction for some may be experienced as being moved from one hospital to another.

1.16 The review's recommendations for health board and local authority Partnership in Practice agreements, the appointment of local area co-ordinators, the options for individuals to have personal life plans, and the setting up of a Scottish service network for people with autistic spectrum disorders should all provide opportunities for ensuring on-going responsibility for children, young people and adults who enter secure environments. As the following chapters demonstrate, however, these mechanisms do not yet feature in the descriptions given of the processes of identification, assessment, service provision and after-care for this client group.

1.17 A further initiative specifically concerned with improving services for people with learning disabilities and/or ASD is the national review of the contribution of all nurses and midwives to the care and support of people with learning disabilities, Promoting Health, Supporting Inclusion (Scottish Executive, 2002c). The review specifically draws attention to the needs of children in secure accommodation and people with learning disabilities in prison. The review emphasises the importance of ensuring "that their everyday and special needs are appropriately addressed" (p.41). Although not specific to these 2 groups of people, the review's proposals to enhance the skills of non-specialist learning disability nurses and to improve access to appropriately trained specialist nurses at local and regional levels have particular saliency. As discussed in chapter 7, in the prisons and secure accommodation, responsibility for the care of children, young people and adults with learning disabilities falls heavily on largely 'generic' health care staff, with little direct input from learning disability specialists.

Single shared assessment

1.18 Among its recommendations the Scottish Executive Joint Future Group (2000) proposed the introduction of single shared assessment: a mechanism for streamlining and co-ordinating needs assessments across and within disciplines and agencies. Although a 'generic' initiative, the introduction by April 2004 of single shared assessment across all community care groups will impact upon people with learning disabilities and/or ASD in the community. What cannot be predicted is the extent to which it is applied in relation to people in secure settings. Chapter 6 below suggests that single shared assessment has yet to fully enter the consciousness of these environments.

Policies and initiatives with implications for children and young people, including those with learning disabilities and/or ASD who require secure accommodation

For Scotland's Children

1.19 Of the policies and initiatives aimed at children the baseline is perhaps For Scotland's Children published in 2001 (Scottish Executive, 2001a). In response to concerns that current children's services were poorly integrated and that some children were 'invisible' to services, the report sets out an Action Plan covering 6 areas including preparation of a joint children's service plan, inclusive access to universal services, co-ordinated needs assessment, co-ordinated interventions and targeted services. It is outwith the scope of this study to assess the extent to which these objectives have been implemented in ways which include children with learning disabilities and/or ASD in general, or those in secure accommodation in particular. The aims, however, are not dissimilar to those set out in The same as you? (Scottish Executive, 2000).

Looked After Children

1.20 The Children (Scotland) Act 1995 provides the legislative framework for local authority responsibilities toward looked after children.

1.21 Children and young people can be admitted to secure accommodation on remand or following conviction under the Criminal Procedures (Scotland) Act 1995. The other route is via provisions in the Children (Scotland) Act 1995. Under the Act children may be referred through the Children's Hearings on a Place of Safety Warrant for up to 22 days, or under a supervision requirement valid for up to 3 months. In addition a child may be kept in secure accommodation for 72 hours on an interim placement. Section 70 (10) of the Act sets out the criteria for admission to secure accommodation i.e. that the child:

• having previously absconded, is likely to abscond unless kept in secure accommodation, and if he absconds it is likely that his physical, mental or moral welfare will at risk; OR
• is likely to injure himself or some other person unless he is kept in such accommodation

1.22 A Secure Remedy (Scottish Office, 1996) reviewed the role, availability and quality of secure accommodation in Scotland. Its recommendations include improving co-ordination of assessment and information sharing, the development of needs led programmes of care, treatment and education for each child, agreed standards between local authorities for arranging after care and education for children leaving secure care, consideration of staffing levels and staff training, consideration of the design and physical environment of the secure units. In addition the report proposed that there should be further research in to the mental health needs of children in secure accommodation. The report also recommended that units develop plans for dealing with challenging behaviour. The report does not, however, refer to the specific needs of children and young people with learning disabilities and/or ASD in secure care.

1.23 To address the after care needs of looked after children, including those in secure accommodation, Sections 17 and 29 of the Children (Scotland) Act 1995 sets out the duties on local authorities in terms of preparing a child for a time when they are no longer 'looked after' and in relation to people above school leaving age. In response to research on the poor outcomes for young people leaving care a report from the Working Group on the Throughcare and Aftercare of Looked After Children in Scotland made a number of recommendations for improving arrangements and services (Scottish Executive, 2002d). These include ensuring a throughcare and aftercare plan and a nominated key worker/adviser for all young people leaving care. For young people with learning disabilities and/or ASD, however, the issue may not be leaving care, but of transitions between children's services and adult services, or between local authority and health care services. How these transitions are managed is discussed in chapter 8 below.

Learning with Care

1.24 Guidance to the Children (Scotland) Act 1995 states that "children who are looked after should have the same educational opportunities as all other children for education, including further and higher education, and access to other opportunities for development" (quoted in Learning with Care, Scottish Executive (2001b)). The inspection report Learning with Care on the education of looked after children, however found variations across local authorities in the extent to which these objectives were being met. The report also highlighted the consequent educational disadvantage experienced by looked after children. Following the report local authorities were set targets for improving the educational attainment of looked after children including: ensuring they receive full time education; have a care plan which addresses educational needs; and there is a teacher designated to champion the interests of these children.

1.25 Again, although not a specific focus of the initial report or the subsequent recommendations, children and young people with learning disabilities and/or ASD in secure accommodation may be doubly disadvantaged: both in being 'looked after' and in having specific learning and educational needs. The ways in which secure accommodation units attempted to cope with these needs are described below in chapter 7.

Additional Support for Learning

1.26 Future educational provision for children with special needs, including those with learning disabilities and/or ASD in secure accommodation, will be informed by the proposals set out in the Education (Additional Support for Learning) Bill, published in October 2003. The bill anticipates replacing the current Record of Need system with a new duty on local authorities to identify and assess children with additional support needs (ASN) and provide them with individually tailored education packages.

Youth Justice

1.27 Throughout the course of the research project a number of policies and initiatives were launched focusing on youth justice. These include: Scotland's Action Plan to Reduce Youth Crime 2002 (Scottish Executive, 2002e); the 10 point plan proposed by the Ad Hoc Ministerial Group on Youth Crime (Scottish Executive, 2002a); and the publication of a set of National Standards for Scotland's Youth Justice Services by the Improving the Effectiveness of the Youth Justice System Working Group (Scottish Executive, 2002b). The proposed national standards include, as one objective "To target the use of secure accommodation appropriately and ensure it is effective in reducing offending behaviour". During the course of the research the Secure Accommodation Advisory Group also made public its 2001 interim report on the use and development of secure accommodation (Scottish Executive, 2003a).

1.28 To implement the proposals a number of new funding streams have been made available including: the Youth Crime Prevention Fund, the Youth Justice Teams Fund and the Intensive Support Fund. The latter aims to increase the level of community based supervision of young offenders and improve support for those returning to their communities from secure accommodation.

1.29 Across these initiatives the common themes are early intervention/prevention, responding to offending behaviour, tackling the effects of youth crime on individuals and communities and preventing re-offending. All of these have potential implications for children and young people with learning disabilities and/or ASD who engage in offending behaviour. In the context of the research, however, the 2 key themes are the expansion of the secure estate and the emphasis on programmes to prevent offending and re-offending.

1.30 In March 2003 proposals to create an extra 29 secure accommodation places were announced. In addition to improving the geographical spread across Scotland, the aim is to provide a wider range of accommodation including dedicated places for girls and women and support for young people with mental health problems. At this stage it cannot be predicted what effects, if any, the dual approach of targeted use and the expansion of the estate will have on the referral of young people with learning disabilities and/or ASD. As indicated in chapters 3 and 4 below, at present the numbers identified are extremely small. It is possible that improved identification, particularly of children and young people with ASD may create a demand for further specialisation across the expanded estate, analogous to the increased provision for those with mental health problems.

1.31 To prevent youth offending and re-offending the different initiatives emphasise the role of programmes or interventions targeted at offending behaviour. Objective 2 of the proposed national standards, for example, seeks to "Improve the range and availability of programmes to stop youth offending" (Scottish Executive, 2002b). This extends to improving the range of programmes provided in secure accommodation. Chapter 7 below, however, suggests that unless these programmes can be tailor made or re-designed they may prove to be less than effective in helping children and young people with learning disabilities and/or ASD who engage in offending behaviour.

Policies and initiatives with implications for young people and adults with learning disabilities and/or ASD who offend or whose behaviour puts them at risk of contact with the criminal justice system

Health, Social Work and Related Services for Mentally Disordered Offenders in Scotland (NHS MEL (1999)5)

1.32 For adults with learning disabilities and/or ASD who engage in offending behaviour the key policy document is NHS MEL (1999) 5 Health, Social Work and Related Services for Mentally Disordered Offenders in Scotland. This sets out the roles and responsibilities of statutory agencies to meet the care, treatment and security needs of people with mental health problems, learning disabilities or a personality disorder who come into contact (or are at risk of contact) with criminal justice services. The policy excludes children on the basis that the needs of children and adolescents "are very specific and every effort should be made so that they are dealt with separately" (p.4).

1.33 The pattern of future services proposed specifically for people with learning disabilities include a range of accommodation with different levels of security including secure, semi-secure, potentially lockable, and staffed community accommodation, as well as input from a range of health, social work and voluntary sector providers. Recognising the vulnerability of people with learning disabilities in prison, the review recommends the availability of diversion schemes when appropriate.

1.34 Following a review of the implementation of the policy, the Scottish Executive issued a care pathway framework to enhance integrated working between the different agencies at different stages of an individual's route through the criminal justice, health care and social work systems (NHS HDL (2001) 9). The need to improve the integration of the different elements of the service system also emerged from a consultation focusing on the governance and accountability of the State Hospitals Board. Plans are now in progress to set up a national forensic managed care network.

Criminal justice legislation and sex offending

1.35 Other legislative changes or policy initiatives whose impact upon people with learning disabilities and/or ASD who engage in serious offending behaviour is untested include the Criminal Justice (Scotland) Act 2003. This introduces the Order for Lifelong Restriction for serious offenders and sets up a Risk Management Authority. This legislation builds on the work of the Expert Panel on Sex Offending (Scottish Executive, 2001c) and the MacLean Report on Violent and Sexual Offenders (Scottish Executive, 2000). Specifically in the context of sex offending, an expert group was set up in March 2003 to consider how agencies can work better together to manage the risk presented by sex offenders. As described in chapter 5, a number of people within the sample for the study had engaged in offending of a sexual nature.

Scottish Prison Service policies

1.36 Within the prisons 2 policies are of specific relevance to understanding the resources available to support people with a learning disabilities and/or ASD in secure settings. First, the SPS Positive Mental Health Strategy (2002a) sets out objectives for responding to the mental health needs of prisoners and creating an environment which enhances positive mental health. Key to realising these objectives is the role of prison based multi-disciplinary mental health teams. Among the target groups identified are people with "cognitive impairments" including those associated with a "learning disability". The policy recognises, however, that some areas are not yet fully addressed and require further needs analysis and research. Learning disability is specifically included as one such area.

1.37 The second policy of relevance is the SPS Sentence Management Process (2002b). This is a system of assessment, action planning and interventions geared towards reducing an individual's offending behaviour. At a number of points in the following chapters it is suggested that as a process it provides an opportunity to identify or flag up needs relating to an individual's learning disability and/or ASD. However, because of the limited scope for tailoring interventions, the view was also expressed by research respondents that the process may have only a limited impact on reducing offending behaviour among this group of people.

Discussion

1.38 There is no one policy encompassing children, young people and adults with a learning disability and/or ASD whose behaviour or welfare needs may lead them on the pathway to secure care. What this overview illustrates is the range of well-developed policies that impact, to a greater or lesser degree, on this "unique" group of people, either because they have a learning disability or ASD, because they are children or because they are adults who engage in offending behaviour.

1.39 It is not that these different policies are in conflict. In a number of respects they in fact overlap in their core objectives or the mechanisms they propose to meet these objectives. But to what extent are policies intended for people with learning disabilities and/or ASD translated or adapted for implementation into secure environments such as prisons or secure accommodation for children? On the other hand, how flexible and adaptable can policies intended to inform the structure and functions of secure settings be to meet the specific needs of the small numbers of people with a learning disability and/or ASD?

1.40 Some of these questions are addressed in the following chapters. But what the policy overview does suggest is the need not just for a care pathway for individuals, but a policy pathway to map the points of connection.

LITERATURE REVIEW

Issues of method

1.41 One of the specific objectives of the research was to review the literature on people with learning disabilities and/or ASD in secure settings, summarising the main findings and highlighting any gaps in information.

1.42 As with the policy context, identifying research relevant to the study meant following a number of quite different lines of enquiry. Search terms included 'service' terms, for example, prison, secure care, special hospital, approved schools and forensic; 'status' terms such as prisoner, detained, probation, convicted, remand, children, young offender; coupled with 'clinical' terms including learning disability, mental retardation, intellectual disability, autism/autistic and Asperger's syndrome. The 2 inclusion criteria for the literature review were that the studies were specifically concerned with, or specifically included, people with learning disabilities and/or ASD, and, were set in, or addressed some issue relating to the security of the environment or the need for security.

1.43 Even narrowing down the review to these 2 criteria was not without its difficulties. The concept of 'security', for example, is difficult to pin down, including as it does relational, physical and procedural dimensions (Vaughan, 2002). Although not watertight, for the purposes of the literature review 'secure settings' comprised: prisons, in-patient care providing a level of physical and/or relational security over and above or instead of a locked door and secure accommodation for children. The user information sheet developed by the research project to describe to potential interviewees what the study was about summarises these different environments as "places where people can't just go out when they want to".

1.44 The concept of learning disability is also fluid. First, there are the different terms used, for example, intellectual disability, learning difficulty, mental retardation, to describe what may or may not be a similar set of attributes. Second, the measures used to assess these attributes, and the cut off points used to distinguish between people with and without learning disabilities make comparison difficult. The most frequently cited cut off point is an assessed IQ of 70 or below, but some services determine their own thresholds. Third, the use of different tools and measures for estimating incidence and prevalence in different environments also undermines the scope for comparison.

1.45 Whether someone is defined as an 'offender' may not just be dependent upon notions of intent, or the assessed capacity to tell right from wrong (Holland et al, 2002). Other factors, such as service responses may determine whether similar behaviours are processed via the criminal justice system or contained within service systems (Lyall et al, 1995).

1.46 Each of these 3 definitional problems have implications not just for the literature review, but for the research as whole in terms of the range of healthcare environments included ( chapter 2), the ways in which people are identified ( chapters 3 and 4), and the routes by which people arrive in the different settings ( chapter 5).

Emerging themes

1.47 Despite the difficulties of definition and comparison 9 key themes emerged from the literature reviewed.

• The under-identification of people as having a learning disability and/or ASD among those who come into contact with the criminal justice system. Petersilia (2000) and Flynn and Bernard (1999) point to the difficulties the police and others in the criminal justice system have in recognising that someone may have a learning disability, particularly where this is mild or borderline. Even in clinical settings the findings from a number of settings suggest that among trained professionals outwith specialist services there may not be an awareness, knowledge or consideration of the possibility of a diagnosis of learning disability or, in particular, of ASD (Gunn et al, 1991; Scragg and Shah, 1994; Hare et al 1999; Siponmaa et al, 2001)
• Studies focusing on prison populations have found only very small proportions of people with an IQ of less than 70. However, the different methods employed, populations sampled, together with contextual factors such as criminal justice policies, mean that there is no one figure that can be used as a benchmark. For example, estimates for remand prisoners range from 2.0% to 5.0% (Woods and Mason, 1998; Holland et al, 2002). For sentenced prisoners the prevalence rate can vary widely from 0.4% of adult males (Gunn et al, 1991) to 28.8% (Murphy et al, 1999).

  Even if the proportion of people with an IQ of less than 70 is small, there is felt to be a high proportion of people with low educational levels. A study of remand prisoners in Scotland, for example, found that only 0.3% of the sample had an IQ below 70. In total, however, 11% had an IQ of 80 or below (Davidson et al, 1995). Murphy et al (1995) and Winter et al (1997) both found that although very small proportions had an IQ of 70 or below there were men among their sample prison populations who were likely to have major difficulties with adaptive behaviour or who were very vulnerable psychologically.

  Where identified those in contact with the criminal justice system tend to have mild or borderline learning disabilities (Cullen, 1993; Thomas and Singh, 1995; Clare and Murphy, 1998; Petersilia, 2000; Mason and Murphy, 2002). This has implications for early identification.

  No studies were found indicating the prevalence of ASD among young offenders or adults committed to prison. Murrie et al (2002), however found that people with Asperger's syndrome in forensic settings have little or no experience of drug or alcohol misuse and little or no prior contact with the criminal justice system

• Studies suggest comparatively high proportions of people with mild or borderline learning disabilities in forensic/secure in-patient settings (Kearns and O'Connor, 1988; Puri et al, 2000; Alexander et al, 2002)
• The socio-demographic characteristics and life circumstances of people with learning disabilities and/or ASD in secure settings reveal a multiply deprived group of people. Many will have experienced abuse or disrupted early lives, poverty, unemployment, prior institutionalisation and contact with statutory services (Winter et al, 1997; Flynn and Bernard, 1999; Glaser and Deane, 1999; Simpson and Hogg, 2001; Alexander et al, 2002; Holland et al, 2002). A number will also have alcohol and drug related problems (Winter et al, 1997; Glaser and Deane, 1999)
• A high proportion of people with learning disabilities in secure settings have been found to also have a diagnosable mental illness (Alexander et al, 2002; O'Brien, 2002).

Research has pointed to the vulnerability of young people with learning disabilities to the risk factors implicated in mental illness (Foundation for People with Learning Disabilities, 2002; PHIS, 2003). Young offenders are also vulnerable to mental health problems (Mental Health Foundation 2002) as are 'Looked after Children' (ONS, 2003). As a result children and young people with learning disabilities and/or ASD in secure settings, particularly as a result of their offending behaviour, may be particularly vulnerable to mental health problems

• The routes to secure settings may be contingent not upon behaviours per se, but on factors such as whether or not they are known to services. If known to services carers may be reluctant to call the police. If they are not known then they may be referred to the criminal justice system (Lyall et al, 1995; Clare and Murphy, 1998; Flynn and Bernard, 1999)
• Whether in forensic/secure in-patient settings or in penal settings, people with learning disabilities and/or ASD can be differentially disadvantaged. Higher proportions who have not committed offences have been found to have been admitted to these specialist settings, compared with people with mental health problems (Woods and Mason, 1998). They may also have longer average lengths of stay in these secure settings (Butwell et al, 2000). In the prisons, people with learning disabilities may not be able to take part in programmes and this may limit their opportunities for early release. They may find it more difficult to understand the prison rules, which may also mean they are involved in more incidents within prisons. People in prison may also be particularly vulnerable. But, if accommodated in segregation or protection units this may further limit their opportunities to take part in education or other activities (Gunn et al, 1991; Davison et al, 1994; Flynn and Bernard, 1999; Glaser and Deane, 1999; Petersilia, 2000)
• People with learning disabilities and/or ASD who offend, or engage in offending behaviours fall between different service stools: between prison and in-patient care; between health and social work responsibilities; between learning disability and mental health services (Winter, 1997; Coid, 1998; Smith, 1998; Murphy, 2000; Purie, et al, 2000).

  Children too can be caught on the edge of service systems, Kurtz et al (1998) describe how specialist services can lack confidence in dealing with children in secure settings who have mental health problems: child and adolescent psychiatrists feel they lack confidence in dealing with violent behaviour; forensic psychiatrists lack experience in dealing with children and families. The authors argue the case for specialist resources for consultation and training to support children in secure settings with mental health problems. Further evidence is needed to establish whether the same applies to children with learning disabilities and/or ASD in secure accommodation

• Other studies have found that services are not always available, or not available in ways that meet the needs of this group of people (Clare and Murphy, 1998; Coid, 1998; Smith, 1998; Purie et al, 2000; Barron et al, 2002; Murrie et al, 2002). A consistent argument is that because of their specific treatment and therapeutic needs as well as the management issues they pose people with learning disabilities and/or ASD accommodated in existing secure in-patient care or in prisons need specialist services (Mayor et al, 1990; Holland, 1991; Thomas and Singh, 1998; Murphy and Fernando, 1999; Puri et al, 2000).

  Specifically in relation to people with ASD in secure in-patient settings, Hare et al (1999) comment that although people with ASD comprise only a comparatively small proportion of the special hospital population (in England), they pose particular management, treatment and placement problems

1.48 From the literature reviewed people with learning disabilities and/or ASD present a distinctive set of needs. Although possibly having mild or borderline learning disabilities, their backgrounds suggest personal experience of multiple deprivation. A number may have co-morbid mental health problems and or needs relating to substance misuse. The borderline nature of their impairment may mean they go unidentified: if identified, however they may fall between service responsibilities. Wherever they end up, and by whatever route, the likelihood is that services may be struggling to meet the particular combination of therapeutic, treatment and management needs they present. As a result they may be both vulnerable and differentially disadvantaged. In the prison context in particular this may mean, as Petersilia comments:

"It appears that offenders with mental retardation do more time, do harder time, and get less out of their time, and are more likely to be returned to prison after release than person's who are not mentally handicapped." (1997, in Linhorst et al, 2002, p.41)

Gaps in the evidence base

1.49 Despite the fairly extensive literature identified and reviewed a number of gaps in the evidence base are apparent. The picture is still, in some respects, incomplete. In particular the missing pieces include:

• Limited evidence relating specifically to people with ASD who offend or engage in offending behaviour
• Limited evidence relating specifically to the experiences of, and responses to, children or young people with either learning disabilities and/or ASD in secure settings
• Few studies comparing the experiences of, and the routes to, secure care for men and for women with learning disabilities and/or ASD in secure settings
• Limited evidence on the experiences of people with learning disabilities and/or ASD from minority ethnic communities who offend or engage in offending behaviour, or their routes to secure settings
• Very little research comparing the care pathways of offenders and non-offenders to secure in-patient settings, and the long-term outcomes for individuals
• Beyond issues of recidivism there is little evidence exploring the outcomes for people with learning disabilities and/or ASD in secure settings and the people who care for and about them
• The majority of studies are quantitative. A study by Flynn and Bernard (1999) was one of the few identified that gave a voice to people with learning disabilities in secure settings. More qualitative work needs to be undertaken to explore the experiences and perceptions of people with learning disabilities and/or ASD in secure settings, and that of their families or informal carers.

1.50 The following chapters describe the findings from the research that begins to fill some of these gaps. But much has still to be learned.

STRUCTURE OF THE REPORT

1.51 The research design and methods are described in the next chapter. This is followed by a discussion in chapter 3 of ways in which people in the different secure settings are identified as having a learning disability and/or ASD. This sets in context the findings presented in chapter 4 on the numbers of people with learning disabilities and/or ASD in each setting at the time of the study. The characteristics of a sample of this group of people are described in chapter 5. These characteristics provide a framework for understanding the processes of identification, assessment, service delivery and throughcare and after care planning described in chapters 6, 7 and 8. Chapter 9 discusses the emerging themes and issues. These inform the conclusions set out in chapter 10.

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