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

EXECUTIVE SUMMARY

INTRODUCTION AND BACKGROUND

• The same as you? the review of services for people with learning disabilities published by the Scottish Executive in 2000 recommended that the Scottish Executive should commission research into the numbers of people with learning disabilities in prison or secure accommodation and the arrangements for assessing and providing them with care. In response the Scottish Executive Health Department commissioned the study which forms the basis of this report.
• For the purposes of the research secure accommodation comprises the State Hospital, 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.
• The study was concerned with children, young people and adults with learning disabilities and those with Autistic Spectrum Disorders (ASD). The defining characteristics the study took as being associated with learning disabilities and with ASD are described in Annex 1.
• Different policy streams can affect people with learning disabilities and/or ASD in different secure settings. These include: overarching policies and initiatives such as mental health legislation; policies with implications for children and young people, including those with learning disabilities and/or ASD who require secure accommodation; and policies 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.
• A literature review undertaken as part of the study revealed the definitional and methodological difficulties associated with measuring the prevalence of people with learning disabilities and/or ASD in secure settings.
• Nine key themes emerged from the literature reviewed including: the under-identification of people as having a learning disability and/or ASD among those who come into contact with the criminal justice system; the multiply deprived backgrounds of this group of people; the risk of some people in this group falling between service and policy responsibilities.
• To inform policy and practice development research needs to be undertaken in a number of areas. In particular more needs to be understood about people with ASD who offend or come into contact with the criminal justice system. Research is also needed which compares the routes to, and the experiences of, men and women with learning disabilities and/or ASD in secure settings and of people from minority ethnic communities. The outcomes for people with learning disabilities and/or ASD in secure settings also need further investigation.

STUDY DESIGN AND METHODS

• The study comprised 2 stages. The first stage involved a scoping exercise across 57 secure settings: identifying the numbers of people with learning disabilities and/and or ASD in each of the settings and the services available. The brief for the research project specified the need to include at this stage all 16 prisons in Scotland, the 11 wards on the State Hospital site and the 6 secure accommodation units for children. In addition the researchers included 24 hospital in-patient units selected because they accommodated people with learning disabilities and/or ASD who had offended or engaged in offending behaviours, or who were a risk to themselves and/or others.
• The first stage involved the completion by the selected units of 3 forms: a unit level profile; a unit level recording form; and individual level case recording forms. Social Enquiry Reports (SERs) prepared by criminal justice social workers in 2 local authority areas were also reviewed.
• The response rate to this stage was extremely good: 52 units returned unit profile and unit recording forms - a response rate of over 90%. Over two-thirds of the case recording forms distributed were completed and returned.
• The second stage involved an in-depth investigation of 7 secure settings. The research brief indicated that this stage should include the State Hospital, St Mary's and Rossie secure accommodation units for children and 4 prisons. The 4 prisons were selected by the researchers to ensure that the sample included establishments holding women, young offenders, sex offenders and prisoners serving shorter sentences. Each of the prisons selected had someone currently resident who was believed to have a learning disability and/or ASD. In each setting interviews took place with service managers and staff and, where possible, people with learning disabilities and/or ASD. One relative also took part in an interview.
• The design and methods employed established the numbers of people identified or assessed as having a learning disability and/or ASD across the different secure settings. The perception was held, particularly by prison staff and managers, that there was, in addition, an indeterminate number of people who may have a learning disability and/or ASD who had not been identified. This meant that it was not possible to determine prevalence rates.

IDENTIFYING PEOPLE WITH LEARNING DISABILITIES AND/OR ASD IN SECURE SETTINGS

• The data suggest that there are 3 'triggers' for identifying people with learning disabilities and/or ASD within the secure settings: information made available prior to or at referral; information collected in the course of routine assessments following admission; and information collected or assessments undertaken in response to problems or concerns arising.
• The value of pre-admission information depends upon whether people have been identified prior to referral as having a learning disability and/or ASD and whether this information is available to the secure setting.
• Post admission, the secure settings described different routine assessment mechanisms and processes which, though not specific to screening for, or identifying, whether someone has a learning disability and/or ASD, could flag up the need for specialist assessment. This requires people to be aware of learning disabilities or ASD as a possible explanation for someone's behaviour or responses.
• Assessment tools for identifying someone as having a learning disability and/or ASD may be less significant than access to professionals with specialist expertise in these areas.
• The use of tools and the availability of expertise in assessing or diagnosing ASD appears to be limited.
• The data suggest that the range of different agencies and professionals within and outwith the secure settings may not necessarily result in improved identification but, in some cases at least, a risk of people slipping between the different 'nets'.

HOW MANY PEOPLE?

• A self-completion pro-forma distributed to secure settings asked respondents to indicate the numbers of people currently accommodated who had been formally assessed or diagnosed as having, or were strongly believed to have, a learning disability and/or ASD. This yielded the following numbers of children, young people or adults with a learning disability and/or ASD in each of the secure settings:

  19 people across the 16 prisons in Scotland
  3 children or young people across the 6 secure accommodation units in Scotland
  26 people accommodated in the specialist ward for people with learning disabilities on the State Hospital site
  19 people accommodated in selected secure, forensic or other specialist settings for people with mental health problems, including 9 wards on the State Hospital site
  149 people in selected secure, forensic or other specialist settings for people with learning disabilities

• Although across the prison estate only a small number of people were formally identified, the perception among prison respondents was that this represented only a proportion of a larger number of prisoners who had a learning disability and/or ASD, but who had not been identified, assessed or diagnosed
• The figures underline questions concerning the processes for identifying and assessing children, young people and adults prior to and post-admission to a secure setting.

PEOPLE IN SECURE SETTINGS: CHARACTERISTICS, HISTORIES, RISKS AND VULNERABILITIES

• The sample of 49 for whom case recording forms were completed comprised a white, predominantly male population.
• The majority of the sample had a learning disability only, 4 people had an ASD, and 7 both learning disabilities and an ASD.
• The majority of the sample for whom information was available had an assessed IQ of between 60 - 70. Eight people had assessed IQs of over 70, and 9 had IQs under 60. The majority of the latter were in learning disability units.
• At least 24 people also had mental health problems. Among the prison population this tended to be depression. People in learning disability units tended to be diagnosed as having psychotic illnesses.
• A number of people also had chronic physical health conditions. Communication difficulties were noted in relation to 28 people.
• Available information on past histories indicates that the majority of people had been in local authority care at some time. A large proportion had been in-patients of learning disability or psychiatric units at some time in the past. Across the sample 19 people had had periods in both learning disability and psychiatric units.
• Lengths of stay were variable in and across the secure settings, though for adults in prison these tended to be shorter on average than in healthcare settings. The young people had been in secure accommodation for between one year and 20 months.
• Information on index offence and risks posed to others indicate that a number of the sample had committed quite serious offences, including sexual offences, culpable homicide and fire raising. Others may not have been convicted but were at risk of engaging in offending behaviour.
• The sample was also a vulnerable group of people. A number of people with learning disabilities and/or ASD were considered by staff within the units to be at risk of self-harm. People were also felt to be at potential risk from other residents. The possible risks identified by staff included being ostracised, bullied or exploited.
• A number of people had been assessed under the Adults with Incapacity (Scotland) Act 2000 ( see 5.63). Independent Advocacy was believed to be accessible to the majority of the sample in healthcare settings and secure accommodation, although not everyone had an advocate. None of the prison sample had an independent advocate.
• The key features distinguishing the profiles of the adults in the different environments include the IQ levels of individuals, the nature of co-morbid mental illness and the routes to the different types of setting. In other respects adults in different types of secure environment shared similar characteristics.

ASSESSMENT OF NEED AND CARE PLANNING

• Comparing across the settings, the secure accommodation units for children had access to the widest range of contributors to assessment from both within and outwith the units.
• Within the prisons, there is evidence of multi-disciplinary input but the range of resources appears more circumscribed. There also does not appear to be a systematic approach to actively involving users in the assessment process.
• The State Hospital and the learning disability and psychiatric units appear to have a broad range of assessment resources to draw upon. These are largely internal to the units.
• Both in relation to the State Hospital units and the in-patient units for people with learning disabilities, there may be a lack, in one form or another, of external voices to contribute to assessments. This includes independent advocacy or relatives, where appropriate.
• Co-ordinating assessments may be a single or joint responsibility. Recording mechanisms too, may be a single set of notes or profession specific.
• Risk assessments tend to be based on professional expertise or generic tools.
• The majority of people in the sample had some form of needs-led, if not person-centred, care plan.
• Care plans prepared by the State Hospital and secure accommodation for children had the dual purpose of informing current activities and interventions and planning for the future. Within the prisons the focus at the care planning stage tended to be more on the here and now.
• From the descriptions of assessment and care planning it would seem that a number of recent relevant policy initiatives, including single shared assessment, personal life plans and the involvement of local area co-ordinators do not yet have currency within the secure settings in which people with learning disabilities and/or ASD may find themselves.

MEETING ASSESSED NEEDS

Appropriateness

• The perception among prison-based professionals interviewed was that, in general, the prisons were not an appropriate environment for people with learning disabilities and/or ASD. The view expressed was that the prisons had neither the resources nor the expertise to meet the needs of this group of people.
• The responses of professionals within 2 secure accommodation units suggest that different units use different criteria upon which to judge the appropriateness of the environment for children or young people with learning disabilities and/or ASD. These criteria may relate to the severity of the disability or a child or young person's particular combination of needs.
• The State Hospital respondents suggested that very few people with learning disabilities and/or ASD required conditions of high security. To meet the needs of this group of people efforts had been made by the hospital to enhance the service through the appointment of additional specialists and by adapting programmes.
• Women in general, and women with learning disabilities and/or ASD in particular were felt to be inappropriately placed in the high secure environment of the State Hospital. The need to mix women with mental health problems and those with learning disabilities on the one women's ward was also felt to be less than satisfactory.
• The majority of people in the in-patient learning disability units were felt to be appropriately placed. There were, however, a small number who were felt to need 'step down' or community placements.
• People with learning disabilities and/or ASD on psychiatric units were felt to be inappropriately placed either because of the lack of specialist skills available or because they too required a community placement.

Resources

• Within the prisons the resources to meet the needs of this group of people included the time made available by staff, particularly health care staff, and the attempts to find activities to engage them and with which they could cope.
• There, were though limits to what the prisons could provide. Respondents described how, if staff were not available, people with learning disabilities and/or ASD may have to be locked in their cells for periods to ensure they were protected. It was also suggested that, in the absence of appropriate resources, people with learning disabilities and/or ASD may not have an opportunity to address their offending behaviour.
• To meet the needs of children and young people in secure accommodation the approach was to adapt generic resources including teaching, programmes and health care. There was little evidence of direct input from specialists in learning disabilities and/or ASD.
• Gaps identified by the secure accommodation units included resources for intensive input, the need to adapt programmes, and the reduced levels of support available to young people when they move on from the units.
• Within the State Hospital the specialist unit for people with learning disabilities, the women's unit and rehabilitation unit had access to psychiatric, psychological, nursing and social work expertise in learning disabilities. Hospital wide services including the Patient Activity and Recreation Services were increasingly tailoring services to meet the needs of people with learning disabilities and/or ASD. Adapted psychological intervention programmes had recently been developed and introduced.
• For State Hospital respondents the perceived obstacles to meeting the needs of people with learning disabilities on the site included: the high number of people accommodated on the one ward for people with learning disabilities and/or ASD; the need to support both people with mental health problems, who form the majority, and people with learning disabilities and/or ASD on the same site, and in some cases on the same wards; and the use of some generic services which may be less sensitive to the needs of this client group. The significant gap identified, by staff was the perceived lack of appropriate community-based facilities to enable people to move on from the State Hospital.
• In-patient learning disability units had access to a wide range of professionals with specialist learning disability expertise.
• Although not drawing on the same range of specialists, the psychiatric units appeared to have developed very individualised packages, including social work and voluntary organisation input.
• One service gap identified by learning disability and psychiatric units was the lack of appropriate accommodation to enable people to move on.

Three themes emerge from the overview of ways in which the settings meet the needs of people with learning disabilities and/or ASD.

• First, that people with learning disabilities in general, and women and people with ASD in particular, do not fit easily into what is perceived by respondents to be the core business of the different secure environments.
• Second, respondents perceived there to be a lack of appropriate resources outwith the secure settings.
• Third, different strategies are used to respond to the needs people present: using specialist resources; using generic resources; and adapting generic resources.

MOVING ON: THROUGHCARE AND AFTER CARE

• For people in prison arrangements for throughcare and after care are contingent on whether they are remand or sentenced, and, if sentenced, the length of sentence and/or whether they will be going out on licence or under a supervision order.
• For people on remand and those eligible for voluntary after care, arranging support on release is a largely informal process involving prison healthcare or social work staff making contact with outside agencies on behalf of the person.
• 'Formal' mechanisms for after care and throughcare planning include the criminal justice social work led process for people going out on licence and the health care led Care Programme Approach.
• The formality of the process for people going out on licence may ensure continuity of care, but may place requirements on an individual that they are unable to fulfil. The informal approach for people who are not under licence may mean they do not receive follow up or support in the community, potentially increasing the likelihood of re-offending.
• The secure accommodation units for children appear to be forward focused and proactive in planning for throughcare and after care. There is also an emphasis on multi-disciplinary and multi-agency working, involving unit based and external professions and agencies.
• Discharge planning for people on the State Hospital site was multi-disciplinary but primarily involved professionals from within the hospital.
• In the few cases where discharge planning was in progress for people on in-patient units outwith the State Hospital there appeared to be greater involvement by external agencies and services.
• Respondents felt that one of the fundamental barriers faced by people ready to move on from healthcare settings was the lack of appropriate resources beyond the secure setting, including a range of types of accommodation and activities and interventions.
• Community-based health and social care resources may also be reluctant to take on responsibility for people, particularly those moving from the State Hospital. State Hospital staff suggested that local units may feel they do not have the capacity to cope with the risks someone poses.
• Interviews with people with learning disabilities and/or ASD revealed their hopes and aspirations but also their frustrations as they wait for appropriate places to become available so they can move on.
• The lack of integrated care networks, clarity of agency responsibilities and a perceived lack of appropriate resources can have a number of implications for people with learning disabilities and/or ASD in secure settings. Some people may have to wait a number of years before they are able to move; some may have to move to units even further away from their family and friends; the risk of recidivism may increase when people move out of prison without timely and appropriate support. For people in the community inadequate or inexperienced support may mean admission or re-admission to the State Hospital.
• A number of recent policy initiatives may assist to break down some of the barriers encountered by people in secure settings. This, however, hinges on the preparedness of 'external' agencies to accept responsibility for these individuals, and the capacities and confidence of mainstream services to respond to their complex needs.

DISCUSSION

• The evidence from the study suggests that children, young people and adults with learning disabilities and/or ASD could find themselves on the 'borderline' not just in terms of the ways in which their capacities and abilities are defined, but in policy and service terms. As a result they may be perceived as not fitting in with what providers see as the core business of the different secure environments. Some people, particularly women and people with ASD may be doubly on the margins.
• To begin to understand the implications for people with learning disabilities and/or ASD the different approaches to identification, assessment and care planning, service provision and after care planning are summarised. Drawing on the comments of respondents a range of possible outcomes for people beyond secure care are described. A number of illustrative scenarios are presented to suggest that unless these different elements of the process are in place, appropriate and in balance, some people may become 'entrapped' within a secure environment while others may find themselves on a revolving door between community and custody.

CONCLUSIONS

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 - 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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