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

CHAPTER THREE IDENTIFYING PEOPLE IN SECURE SETTINGS

BEING MADE AWARE: MECHANISMS FOR IDENTIFYING PEOPLE

3.1 The study objectives included establishing the numbers of people with learning disabilities and/or ASD in secure settings and describing the ways in which people were identified. The 2 objectives are inextricably linked. To set in context the numbers of people identified it is necessary to understand the mechanisms and processes of identification in each of these settings.

3.2 'Identification' has been taken here to include:

• Tools or processes used to formally assess or diagnose someone as having a learning disability and/or ASD
• Other assessments or processes which may serve as an initial screening or alert that someone may have a learning disability and/or ASD
• The ways in which this information is made available to inform action or formal assessment

3.3 Combining these 3 different elements the first stage unit recording forms asked each setting to indicate the means by which they would become or be made aware that someone had a learning disability and/or ASD. Table 3.1 illustrates the mechanisms within each type of setting.

Table 3.1 Means for being made aware that someone had a learning disability and/or ASD by type of secure setting

Note
⁽¹⁾Units could indicate more than one mechanism

3.4 On this basis it would appear that the prisons have access to a number of different sources of information, including health, social work and educational records as well as through referrals to specialists. One mechanism that features less frequently is identification through routine health checks on admission. This is surprising given that all prisoners on admission are given a health check that includes current and past mental and physical health. The 'other' ways include information provided to prison health centres by external agencies or legal agents, referrals from other prison staff, families and even 'self referral'.

3.5 The secure accommodation for children similarly has to hand a number of sources that could alert the unit to the possibility that a young person has a learning disability and/or ASD.

3.6 'Identification' takes on a different cast in the health care settings compared with the prisons and children's units. For the in-patient units with an assessment function 'identification' is fundamental to their role. As one specialist learning disability unit commented, "We would often make the diagnosis following assessment". Outwith the admission/assessment units people will have largely been referred from other in-patient units. As a result people will have been identified as having a learning disability and/or ASD prior to referral.

3.7 Not surprisingly, medical records are pre-eminent as a source of information for the in-patient units. Of lesser significance, particularly for the learning disability in-patient units are social work records and educational assessments. Referral on to other specialists also does not feature very highly. Again this may reflect the fact that a number of units are, or have, the specialist resources to which people are referred for assessment and diagnosis.

PROCESSES OF IDENTIFICATION

3.8 This overview of mechanisms suggests that each of the different types of settings has access to a range of health, social work and educational resources that might alert them to the possibility that someone has a learning disability and/or ASD. The value of these information sources is, though, dependent upon whether the learning disability and/or ASD is specifically identified and the extent to which this information is shared with service providers. Drawing on data obtained from case recording forms, in the course of site visits and from the Social Enquiry Reports (SERs) reviewed, it is possible to get a better sense of how identification processes operate in practice: what information is available, at what stage and to whom.

3.9 The data suggest there are 3 'stages' or 'triggers' to identification: information made available at the point of referral or admission, for example in Social Enquiry Reports (SERs); identification in the course of routine or other assessments following admission; and identification in response to problems or concerns arising.

Background information at the point of referral or admission

Social Enquiry Reports

3.10 For people entering secure settings via a criminal justice route SERs prepared for the courts by criminal justice social work departments are a key potential source for identifying early on that someone has a learning disability and/or ASD.

3.11 A review of 16 SERs across 2 local authority criminal justice social work departments revealed how the reports can be used to both indicate to the courts that the person has been assessed as having a learning disability, and the implications of this in relation to the index offence, risk of re-offending and disposal options. One SER, for example noted that:

"X is diagnosed as being learning disabled: assessment of the latter indicates he is considered to be well below average intelligence. Consequently he has limited verbal, cognitive and intellectual functioning."

3.12 In relation to another person the SER author concluded that "X could not survive within a prison environment and would be vulnerable to exploitation and scapegoating due to his limited ability and lack of awareness". These examples may be atypical of SERs in general. The 2 local authority areas are served by a Forensic Community Mental Health Team with a learning disabilities and mental health remit that has actively sought to increase awareness among criminal justice teams. Nonetheless, they illustrate the potential for SERs to be a useful tool both for the courts and for the secure settings if a custodial disposal is pursued.

3.13 However, SERs are only mandatory under certain circumstances if, for example, a custodial sentence is being considered for someone aged under 21 years. As a result, not everyone will have an SER. Further, the SER, or the information it contains may not be shared with, or made available to those responsible for the person's care. This is suggested by table 3.2. Drawing on the case recording forms the table shows how many people in each setting were believed to have an SER or similar report prepared for the courts and whether the person completing the case recording form had seen this report.

Table 3.2 Whether an SER or similar report was prepared for the court and whether seen by respondents: case recording form sample

Note
⁽¹⁾Missing data means that columns will not total to the number of cases

3.14 Two people in the prison sample gave consent to the research having access to social work reports. Of these, one had an SER relating to the index offence. Although not seen by the researchers, discussion with the person's key worker revealed that reference was made in the report to the person's learning disability. Ironically in this case, there was some doubt as to whether the person actually had a learning disability. Of the 4 State Hospital patients in the sample who had been admitted via the criminal justice system and gave permission for the researchers to access social work reports, only one had an SER, written in the 1970's.

3.15 The fact that SERs for people coming through a criminal justice route are not mandatory solely for social or welfare reasons may therefore limit their scope as an early warning system.

3.16 The other key finding is that, even when prepared, this information is not necessarily shared with or within the secure settings, particularly, it appears with health care staff whether in prison or hospital.

3.17 One team of community based criminal justice workers described a risk alert system. If someone with a learning disability for whom they had prepared an SER were given a custodial sentence the court social worker would be informed. The court social worker would notify the relevant prison social work team.

3.18 The possibility that people would still fall through the net was, though, suggested in the course of site visits to several prisons. One prison based criminal justice social work team described how they would get copies of SERs for people going out on licence, otherwise the reports would be kept with the prisoner's warrant in the prison general office. Health care staff in another prison also pointed out that the SER would accompany the warrant, and while social work may have sight of it, it would not automatically be available to health care staff at admission. The social work department would only pass it on to the health centre if they felt it was necessary.

3.19 In the course of data collection for the study it was also found that SERs may not be made available routinely to the social work staff within a secure health care setting.

3.20 Even if the documentation is made available, social work staff in one prison pointed out that the SER authors would not necessarily know if someone had a learning disability and/or ASD. Unless an assessment was initiated or undertaken previously they may not have information on, for example, IQ level that would enable them to state that someone had a learning disability. They may instead use ambiguous expressions like "low average ability". This does in itself raise a question about the role and responsibilities of SER authors in recommending to the court the need for specialist assessment.

3.21 In effect, SERs are a useful means for early identification, but only if the information is available to the authors and this is subsequently noted and shared.

Pre admission identification

3.22 In addition to SERs a number of other pre-admission mechanisms could assist early identification, including assessment by the secure unit prior to admission and referral information.

3.23 The State Hospital specialist unit for people with learning disabilities and the women's ward would undertake assessments of individuals prior to admission. This would primarily involve psychiatric and nursing staff but, if informed, the hospital based social workers would also aim to be involved in these pre-admission assessments.

3.24 One secure accommodation unit anticipated that a child or young person with a learning disability and/or ASD of a severity that they could not cope independently would be identified in the course of a pre-admission planning meeting or at the point of referral.

3.25 Nonetheless, in the course of site visits both secure accommodation units suggested that, in practice, little information might accompany a child or young person. While a background report might be available for a child referred through the Children's Hearings, there may be a 6-week delay before receiving a report on someone remanded to the secure accommodation unit through the courts. As one staff member commented:

"..the young people sometimes come straight in off the streets..Sometimes we receive paperwork, but this is rare, the kids just arrive, about 50% of them come from the courts. If it's their first time caught then there is no paperwork."

3.26 One team of psychologists based in a secure accommodation unit referred to the "impossibility" of getting a Record of Need from "outside".

3.27 Even if a social work report is available it may be incomplete: secure accommodation units had found that sections of the Looked After Children documentation had been left blank. In one secure accommodation unit 2 respondents felt the need to check the validity of any information that was supplied, on the basis that "sometimes social work are selective about the information they supply, they angle it to get what they want". Where claims of a learning disability or ASD were made, the unit psychologist would try to obtain more information.

3.28 But the issue is not just the availability of information, but, more fundamentally, whether the children or young people were actually identified pre-admission as having a learning disability and/or ASD. A member of staff in one of the secure accommodation units suggested that some children and young people were admitted who did not appear to have a learning disability but this was revealed through testing. The implication is that it is not children and young people with moderate to severe learning disabilities or ASD who are slipping through, but those with borderline or mild learning disabilities and/or ASD: children whose behaviours may have been interpreted as "attitudinal" rather as resulting from a learning disability and/or ASD.

3.29 The 3 case examples of children and young people in secure accommodation included in the study are indicative of the difficulties of early identification. Despite 2 of the children having a Record of Need and all 3 having a Future Needs Assessment, only one person had been identified as having a learning disability prior to admission to the secure accommodation unit.

Identification following admission to a secure setting

3.30 Even if relevant information is missing or unavailable at the point of admission or referral, at various stages at, or after admission, opportunities exist in the routine processes used by secure settings to assess people's needs that could act as further triggers to identification. This section focuses on the use of these processes for identifying whether someone may have a learning disability and/or ASD. More detailed examination of assessments of need, post identification, are discussed in chapter 7 below.

Post admission identification in health care settings

3.31 As noted above, identification in the health care settings is of a different order compared with the secure accommodation units and prisons. The sample of health care settings for people with learning disabilities included secondary or tertiary services to which someone already identified as having a learning disability and/or ASD would be referred for specialist assessment or treatment, or because they required a level of security not available in another health care environment.

3.32 People referred to specialist psychiatric units, including mental health wards on the State Hospital site, may only be identified as having a learning disability and/or ASD following admission and assessment. It was suggested, for example, that despite the State Hospital care pathway for assessment that there could still be gaps in the process.

3.33 Across healthcare settings people with ASD in particular may go unidentified. Studies undertaken in English secure hospitals in the 1990s found that only a proportion of those identified in the course of the research had actually been diagnosed as having ASD (Scragg and Shah, 1994; Hare et al, 1999). It is possible that a similar situation pertains across the Scottish hospitals. One State Hospital respondent, for example suggested that the number of people across the hospital with ASD was not known.

Post admission identification in secure accommodation for children

3.34 Within the secure accommodation units multi-agency and multi-disciplinary case conferences are held 72-hours after a child or young person is admitted and then again at 14 days. These provide an opportunity for information gathering and information sharing between the referrer and the secure accommodation unit and within the unit. They were described by one respondent as a chance to "tease out educational/psychological issues and social concerns".

3.35 The secure accommodation units described a range of psychological, educational and health assessments that would be undertaken in respect of all children or young people referred. Potentially these provide another opportunity for early identification. Education tests will identify how far children and young people have developed in terms of their education. On their own, however, the tests may not be able to distinguish between a child with dyslexia, one who has missed out on their education, or someone with a learning disability.

3.36 It was indicated in one secure accommodation unit that the unit psychologist would see all new admissions. In addition, preparatory to undertaking offending based programmes the psychologists undertake IQ and psychometric tests. Again this has the potential to identify a child with a low IQ.

3.37 Secure accommodation units could also refer children or young people to other specialists. For all 3 young people for whom a case recording form was completed this was one of the ways in which the learning disability/ASD was assessed.

3.38 The data from the case recording forms and site visits suggest that, post referral, the units' education, health, social care and psychology professionals work together. But even with this level of joint working and the mechanisms in place, some people may slip through. One secure accommodation unit, for example, acknowledged that there may be more people with Asperger's than they were aware of.

3.39 To provide more systematic 'baseline' data the psychologists supporting one secure accommodation unit were proposing to undertake an audit to establish baseline information, of which learning disability/ASD would be one component.

Post admission identification in prisons

3.40 Within the prisons there are at least 5 formal mechanisms which could trigger identification: In the course of the reception assessment; through routine health checks on admission; educational assessments; and psychological assessments preparatory to undertaking offence-related programmes. In addition, for convicted prisoners, the SPS sentence management process includes a risk and needs assessment. The focus is on addressing offending behaviour and minimising the risk of re-offending. However, the process of assessment and consultation with the different disciplines and staff may open up a further opportunity for identification.

3.41 Reception managers who allocate people to particular halls or wings on admission made the point in one prison that although they assessed residential care need, or suicide risk, they were not routinely screening for learning disability and/or ASD at this early stage. Furthermore, they did not have "a set of tools or system" to be able to identify people and assess the degree of impairment. They suggested that the availability of these tools at the reception stage might prevent people "slipping through the net".

3.42 All new prisoners undergo a routine health screening on reception to the prison. Undertaken initially by a nurse, the screening is followed up after 24-hours by a medical assessment by the prison medical officer. For 5 of the 9 people for whom case recording forms were completed the routine health check was one of the ways in which the individual's learning disability and/or ASD was identified. However, current procedures for routine screening may be limited as a means for identifying people with learning disabilities and/or ASD. First, information on past hospitalisation may not be available at this early stage. Further, the process relies on self-report, but some people will not know, or will not wish to admit they have difficulties. One nursing assistant described how, in relation to one individual with learning disabilities they had had to do "detective work" to obtain information. Mirroring the reference made by the reception managers to the lack of screening tools this nursing assistant posed the question "what could you ask of a person that would identify learning disabilities?".

3.43 Adult Basic Education assessments undertaken by prison Learning Centre staff to assess learning skills are a further potential trigger for identifying difficulties. But these can be something of a "blunt instrument" unable, on their own to distinguish someone with "lapsed skills", dyslexia or learning disabilities.

3.44 Prison based forensic psychologists, responsible for setting up and evaluating offence based group programmes will undertake assessments, including IQ to establish someone's suitability for a specific programme, but would not routinely be referred someone as part of a process of identifying learning disabilities. One commented: "People with learning disabilities and/or ASD don't really come to the attention of forensic psychologists". One prison's experience was that obtaining an assessment by a clinical psychologist could be delayed by a lengthy waiting list.

3.45 The sentence management process requires a risk and needs assessment to be completed by a trained residential officer within 6 months of sentence. A multi-disciplinary case conference is then held and an action plan developed. Unit managers in one prison suggested that if problems were identified in the course of the assessment a referral could be made to the visiting psychiatrist.

3.46 Within the prisons there are a number of different resources using different means and with different purposes that could potentially flag up or trigger the need for further assessment. But, as with the secure accommodation units, the different elements do not necessarily add up to a whole system. In part this may be because within the prisons no one 'provider' was seen as having responsibility specifically for screening for learning disabilities and/or ASD.

3.47 Perhaps as a corollary of this, information sharing is limited and unsystematic between the different service elements. This has already been touched upon in the context of SERs, but is perpetuated post admission. Interviews in the course of site visits suggest that prison education departments might identify someone as having a problem but not necessarily have a route to pass this on to other agencies such as social work or psychology; prison forensic psychologists would not necessarily have case-specific links with clinical psychologists; prison health care centres and criminal justice social work teams may not initially share information. For the purposes of identification each may have pieces of information but the systems in place do not appear to encourage joining these up until something occurs or the person poses a management problem.

Responsive identification

3.48 The previous sections have described the opportunities available in each type of setting for identifying someone as having a learning disability and/or ASD. What becomes apparent from the data, particularly in the context of the prisons, is that in some cases despite these formal routes identification can still almost be by chance: in response to concerns or issues arising. The triggers here may be more 'informal': the "instinct" of a prison based nurse, or teacher, or a hall officer knowing when something is not right, for example if someone cannot comprehend instructions or has "unusual" behaviour. One open prison described how they picked up that someone had "slight autistic tendencies" because of his behaviour in the communal dining room. To minimise the risk of bullying from other prisoners the person was referred back to the more restrictive environment of a closed prison but one with a health care unit. In another prison the healthcare team included a number of RMHN-trained nurses who were able to draw on their expertise to identify people who might not otherwise be identified.

3.49 Such 'informal' mechanisms are important as a source of identification, but unreliable. Several respondents felt that, in a prison context, people with a learning disability may be less easily identifiable than, for example, someone with a psychosis. Managers in one prison questioned how skilled the staff would be in identifying a problem if someone was not "forthcoming".

3.50 Both informal and more formal mechanism may be moot for people on remand or those on short sentences: people who may "come in and go out". Comments of an anecdotal nature suggest that some at least of these are on a revolving door of breach of the peace charges, prison and discharge, subsequently re-offending and returning to prison. Although believed to have a learning disability they may have never been formally assessed.

ASSESSING/DIAGNOSING LEARNING DISABLITIES AND/OR ASD

3.51 The previous sections have described the formal and informal routes and mechanisms by which the different secure settings can become aware that someone has a learning disability and/or ASD. These include assessment procedures intended for other purposes but which may pick up the need for a specialist assessment to be undertaken. Questions included on both the unit and case recording forms indicate the specialist tools available 'in-house' to formally assess or diagnose someone as having a learning disability and/or ASD post-admission.

3.52 The data suggest that for formal assessment or diagnosis tools were less significant than professional expertise. For example, 3 of the 9 people in prison for whom case recording forms were completed were assessed by a clinical psychologist using a version of WAIS (Weschler Adult Intelligence Scale), a validated tool for assessing for learning disabilities. But in these and other cases assessments by prison medical officers and psychiatrists were combined with more informal methods: "RMHN and RMN nursing staff identified quite quickly, but without formal assessment".

3.53 None of the secure accommodation units for children had access to specialist in-house tools for formally identifying if someone had a learning disability and/or ASD. However, of the 3 young people identified by one of the secure units, 2 had been assessed using WAIS III. A psychiatrist and an educational psychologist had assessed the third person. In another secure accommodation unit referrals for assessment would be made to the visiting clinical forensic psychologist.

3.54 Where formal assessment was undertaken on the in-patient units WAIS III tended to be used. One patient on a psychiatric unit was assessed using Nylander's Screening Questionnaire for ASD in psychiatric patients. The case recording forms also reveal however, that tools would not always be used but assessments undertaken by a range of specialists.

3.55 The specialist learning disability unit on the State Hospital site noted that 'screening' would be undertaken prior to admission to the ward. Another ward on the site indicated that the unit "would refer to learning disability specialists within hospital e.g. CNS [clinical nurse specialist in learning disabilities]".

3.56 One in-patient unit for people with learning disabilities did not use an "exact screening tool", but described a team screening coupled with pre-admission screening information. Psychology, nursing, medical/psychiatric assessments would be included.

3.57 On the basis of the data 'tools' for formal identification may be less significant than staff in the different settings knowing and having access to professionals who do have the relevant experience and expertise.

3.58 The one area where such expertise may be lacking is in identifying and diagnosing ASD. Several clinicians referred to their own lack of expertise in the area and the lack of specialist expertise generally.

EXAMPLES OF PRACTICE

3.59 The study found a number of examples of practice aimed at improving systems for identifying people with learning disabilities and/or ASD in secure settings . These include:

• The SERs reviewed within 2 local authority areas. These illustrate the role the reports can play in alerting not just the courts, but also the secure settings to which people may be referred that the individual has a learning disability and/or ASD
• The proposed audit of children's needs in one secure accommodation unit
• One prison respondent stressed the importance of providing staff with information to improve their confidence in managing people. In this establishment a prison officer who has a child with Asperger's syndrome would attend a case conference for someone with Asperger's. The officer would be in a position to describe the presentation of someone with this syndrome "officer to officer".

DISCUSSION

3.60 From this analysis of the mechanisms and processes for identifying someone as having a learning disability and/or ASD 4 key findings emerge.

3.61 First, people may be referred to secure accommodation without having been previously identified as having a learning disability and/or ASD. The Scottish Executive care pathways framework (NHS HDL (2001) 9) indicates the need for access to specialist and generic mental health and learning disability services prior to, and at the different stages of contact with the criminal justice system. Yet, for those coming through criminal justice routes in particular, the data from the study raise questions about the procedures in places to ensure early identification. This has policy and practice implications that go beyond the scope of the current study.

3.62 Second, the prisons and secure accommodation for children do not undertake initial screening specifically for learning disabilities and/or ASD. Nonetheless, each setting has a number of different assessment processes that could flag up the need for more formal assessment or diagnosis. In effect, the need may be not for more screening tools, but enhanced awareness of the possibility of learning disability and/or ASD as an explanatory variable, and the availability of referral routes for specialist assessment.

3.63 Third, across settings, people with an ASD in particular may go unidentified. Resources in terms of both tools and expertise appear to be in short supply.

3.64 The need for information collected through different routes to be made available to, or shared with, those who have a role in providing care, treatment and support for individuals in each setting is fundamental. The data suggest that at this early identification stage information may not be shared across boundaries.

3.65 In this context 'slipping through the net' may take on a different meaning. In environments where there are a number of comparatively discrete 'nets', for example, community based social work, criminal justice social work, health care and education services, prison or secure care based health, education and social work services as well as custodial services, then without a more systematic approach to information sharing or a single provider with responsibility, the risk of people falling between nets may be high. This may be particularly the case for people on remand or in secure settings for short periods.

3.66 As a result at any one time across the different secure settings the population may comprise:

• Children, young people and adults who have been appropriately identified as having a leaning disability and/or ASD
• People who have not been formally diagnosed or assessed but 'known' or believed to have a learning disability and/or ASD
• Children, young people and adults with a learning disability and/or ASD who have not been identified
• Potentially, too, there may be people who are inappropriately identified as having a learning disability/and or ASD

3.67 Arguably, it is those who are not identified who are the most concern. For individuals it may mean not having access to the same range of 'in-house' resources as others because they are not tailored to their needs. It may mean not having access to appropriate after care, with implications for re-offending and re-admission. For people in prison it may mean being disciplined for breaching rules they do not comprehend, or losing out on privileges such as a tobacco allowance because they are unable to complete the required form. An individual may also be exposed to bullying or manipulation by peers: not just in the prisons, but also in the secure accommodation units for children and in forensic psychiatric inpatient units. As managers in one prison commented: "Because only 2 have been identified they don't pose a management problem for the prison. But there may be problems that the prison doesn't know about".

KEY POINTS

• The data suggest that there are 3 'triggers' for identifying people within the secure settings: information made available prior to or at referral, for example, SERs; 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'

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