ON THE BORDERLINE? PEOPLE WITH LEARNING DISABILITIES AND/OR AUTISTIC SPECTRUM DISORDERS IN SECURE, FORENSIC AND OTHER SPECIALIST SETTINGS
CHAPTER NINE DISCUSSION
9.1 Before drawing together the emerging themes it is necessary first to reiterate the boundaries of the research. First, the study was neither an evaluation nor an inspection, it was a scoping exercise, mapping out at one point in time how many people with learning disabilities and/or ASD were in different types of secure setting in Scotland, their characteristics, their needs and the ways in which these needs were met.
9.2 Second, the focus across the different settings: the prisons, secure accommodation for children, the State Hospital and secure in-patient units, was primarily on one point along the service pathway - the secure setting itself. It touches upon, but does not explore in depth the decisions and processes which propel a person to a secure environment and the outcomes for individuals, their families and the communities of which they are a part.
9.3 Further, in a context in which the identification of people was one of the research questions, the approach adopted to estimate the numbers of people in these settings both exposes the difficulties and demonstrates the implications. The perception expressed by respondents was that the low numbers identified across the prisons and in secure accommodation may be just a proportion of a larger number of children, young people and adults with learning disabilities and/or ASD in these environments.
9.4 Within these boundaries of scope and method the study has nonetheless raised a number of significant policy and practice issues and questions with implications for people with learning disabilities and/or ASD in these settings and for the services which seek to be responsive to their needs.
ON THE BORDERLINE?
9.5 The metaphor of people on the borderline was used in chapter 7 to describe where people fit in terms of these different environments. The sense of this group of people being on the edge, or periphery, or of not quite belonging recurs again and again.
9.6 A number of different policy streams will impact upon the experiences of this group of people. Some policies will affect this group because they are looked after children, others because they have a learning disability, or because they have ASD, others because they are adults with a learning disability and/or ASD who engage in offending behaviour. In effect, children, young people and adults with learning disabilities and/or ASD who require security to keep them, and/or others, safe do not exist as a specific policy group. This may mean that policies specifically targeted at people with learning disabilities and/or ASD are not consistently applied across secure settings. This is not because these policies are not relevant but because they do not extend to, or are not adapted for, the different environments within which people find themselves. The recommendations within The same as you? (Scottish Executive, 2000), for example, may just not have common currency within the prisons or secure accommodation units for children.
9.7 Reflecting this parallel, rather than cross-cutting policy framework, is the sense that people within this group fall between different service stools: between health, social care and criminal justice pathways; between mental health and learning disability services; between 'mainstream' and 'forensic' services.
9.8 Falling between service and agency responsibilities, contingent upon age, or type of behaviours, or diagnosis may result in some individuals being cared for at levels of security higher than required, or not having the opportunity to access relevant specialist services, or being released from prison without appropriate support available in the community.
9.9 Along the dimension of capacities and abilities this group of people present distinctive management, treatment and therapeutic needs. For those with mild or borderline learning disabilities it may mean the needs stemming from their disability are not identified and they are labelled as a 'difficult prisoner' instead. But, even when identified their level of disability is such that they may still not be able to participate in mainstream or generic programmes or group interventions designed for a non-learning disabled majority.
9.10 At the same time a number of people combine behaviours which make them both a high risk to others as well as being 'at risk', either from self-harm or from abuse by others within the secure setting.
9.11 As a result, in a number of ways, people with learning disabilities and/or ASD are perceived as not fitting in with the core business of the secure environments within which they are placed: in non-healthcare settings, for example, where core functions such as providing custody, addressing offending behaviour or providing a secondary education are designed around the needs of the majority population who do not have a learning disability and/or ASD; or in healthcare settings in which the prime focus is on mental health; or people with ASD in in-patient units for people with learning disabilities. Particular groups: women with learning disabilities and/or ASD across all the secure settings for adults; and children, young people and adults with ASD across all settings, may carry the additional burden of being a minority within a minority.
PROCESSES AND OUTCOMES
9.12 To begin to think what this means for people with learning disabilities and/or ASD in these environments figure 9.1 summarises the range of different approaches to identification, assessment and care planning, service provision and after care planning within and across the different secure settings.
Figure 9.1 Summary of approaches to identification, assessment and care planning, service provision and after care planning within and across different types of secure setting
- Pre-admission identification
- Identification at admission
- Identification post admission
- Responsive identification
- Not identified
Assessment and care planning
- Specialist assessment for people with learning disabilities and/or ASD
- Additional assessments of abilities, capacities, needs
- No assessment
- Single shared assessment
- Independent assessment, but collated to inform care planning
- Independent assessment, uncoordinated, number of different care plans put in place by different professions
- Mainstream generic resources
- Adapted generic resources
- Specialist resources
Throughcare and aftercare planning
- 'Formal' arrangements for throughcare/after care planning
- 'Informal' arrangements for throughcare/after care planning
- No arrangements
- Multi-disciplinary and multi-agency throughcare/after care planning (including external agencies)
- Multi-disciplinary and multi-agency throughcare/after care planning (in-house professions/agencies only)
9.13 Individual factors relating to level and type of risks posed, routes to secure care and the statutory context will be influential on where, and why people enter any particular secure setting, and the planning processes in place for when they are ready for release or discharge. Once in the setting, however, service-specific processes, and the extent to which they can be responsive to the specific needs and capacities of people with learning disabilities and/or ASD will impact upon: whether and at what stage a person is identified as having a learning disability and/or ASD; whether or not they have access to appropriate specialist expertise to assess their needs and capacities; whether and to what extent resources can be tailor-made to respond to meet their identified needs and capacities; and, for those who are not under a statutory order on release/discharge, whether or not prior to leaving a secure setting plans are put in place to ensure that when they do move on they have access to appropriate support.
9.14 Although not a study of outcomes the comments made by respondents, particularly in the context of throughcare and after care planning, suggest that the experiences of individuals beyond the secure setting may be as variable as those relating to the process elements. Drawing on these comments Figure 9.2 illustrates some of the possible 'outcomes' for people moving on from a secure environment. Again these reflect both individual and service or resource related factors.
Figure 9.2 Possible after care 'outcomes'
- Person is enabled to move on to an environment of lesser security or with appropriate support in the community
- Person is unable to move on/be transferred because resources outwith the secure setting are unable, unavailable or unwilling to accept them
- On discharge/release person leaves secure setting with insufficient support
- On discharge/release person leaves secure setting unsupported
- On discharge/release person chooses not to take up the service/comply with statutory requirements
9.15 In an attempt to bring together the process elements and after care outcomes figure 9.3 describes a number of scenarios. These scenarios are not mutually exclusive, nor are they intended to cover all possible permutations, including those relating to statutory requirements. Further, no assumptions are made in terms of the clinical needs, assessed risks or qualitative outcomes for individuals. Rather the figure attempts to do 3 things.
9.16 First, the scenarios illustrate some of the different approaches to identification, assessment and care planning, service delivery and after care. Scenario 1 describes an environment where an individual is identified, is involved in, and experiences a co-ordinated needs assessment, in response to which they have access to a range of appropriate services and resources. Throughcare and after care planning are similarly co-ordinated, and include internal and external agencies and professionals, as well as the individual, their advocate and their family, as appropriate. In scenarios 2 and 3, following identification, an individual experiences a co-ordinated assessment. Generic or mainstream resources are adapted to meet their needs. Different professions within the setting might take on responsibility for contacting resources outwith the secure setting to arrange support preparatory to the person moving on. In scenario 3, however, the individual chooses not to take up the after care options, or, if released under an order is unable to comply with statutory requirements. Scenario 4 represents a situation where assessments are uncoordinated and mainstream resources cannot be adapted to meet the needs of the individual. Scenario 5 represents a situation where an individual is not identified and is unable to participate or make use of mainstream resources: the immediate and longer-term needs relating to their learning disability and/or ASD are neither assessed nor addressed.
9.17 Second, the figure aims to underline how each of the different elements from identification through to after care need to be available, appropriate and in balance, within and beyond the secure settings. In effect, although fundamental as a starting point, no matter how joined up or co-ordinated processes of identification, assessment and planning are they may have limited impact on the individual if the appropriate resources to meet assessed needs are not available or accessible while the person is in a secure environment or when they move on. Without this balance between the elements there is a risk of people falling through, or between, service responsibilities.
9.18 If scenarios 1, 2 and 3 are less than optimum in terms of either process and/or outcome, then 4 and 5 come close to being the worst case scenarios along both dimensions. People who, in reality, fall within these latter groups, as study respondents suggest some do, are among the most vulnerable, either because they are unidentified and their needs not addressed, or because they do not 'fit' and are unable to be appropriately supported within secure or community settings. As a result they may find they are caught up on a 'revolving door' between the community and a custodial environment.
9.19 Finally, the figure begins to suggest how, for people with learning disabilities and/or ASD in secure settings, the combination of complex individual need and lack of clear service responsibility or policy focus across settings, may conspire together to exacerbate the exclusion of a group of people already on society's margins.
Figure 9.3 Illustrative scenarios
After care outcomes
Person is identified, experiences a co-ordinated assessment, a package of interventions or programmes is put in place and implemented. Throughcare and after care plans are developed, jointly involving the secure setting and external agencies and professions, the individual and their advocate, their family as appropriate.
The person is unable to move on/be transferred because resources outwith the secure setting are unable, unavailable or unwilling to accept them
Person is identified, person experiences a co-ordinated assessment, generic resources are adapted to assist the individual. Prior to discharge health, social work, or education professionals make contact with providers/agencies outwith the secure setting.
The person subsequently moves on to an environment of lesser security or with appropriate support in the community
As scenario 2
Person chooses not to take up the service/is unable to comply with statutory requirements
Person is identified and assessed by a number of different professions. Resources cannot be adapted to meet the individual's needs.
Prior to discharge health, social work, or education professionals make contact with providers/agencies outwith the secure setting.
Person is discharged/released but resources outwith secure setting are unable to provide sufficient support for the person
Person is not identified as having a learning disability and/or ASD. While in the secure setting they are unable to participate in programmes or activities.
On release person leaves secure setting unsupported
- 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 the 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