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

CHAPTER TWO STUDY DESIGN AND METHODS

AIMS AND OBJECTIVES

2.1 The 2 core aims of the research were to:

• Explore the number of people in secure settings in Scotland who are known to have a learning disability and/or Autistic Spectrum Disorders (ASD)
• Explore the means used to identify, assess need and provide services for people with a learning disability and/or ASD in secure settings.

2.2 To meet these aims the detailed objectives were to:

• Identify the numbers of people with a learning disability and/or ASD in secure settings
• Describe the ways in which people are identified
• Explore the ways in which people are assessed
• Explore the health, welfare and educational services available to meet people's needs
• Explore procedures for release/discharge planning
• Identify gaps in services
• Identify examples of practice
• Explore the views and experiences of detained people with a learning disability and/or ASD
• Explore the perceptions of the families of people with learning disabilities and/or ASD in secure settings.

2.3 To both describe the numbers, needs of, and service responses to, people with learning disabilities and/or ASD in secure settings, and to explore and explain the factors which influence the processes for identifying, assessing and meeting the needs of this group of people, the study comprised 2 stages. Stage one comprised a quantitative scoping exercise across a range of secure settings in Scotland. Stage 2 adopted a qualitative case study approach focusing on 7 settings.

STAGE ONE: SCOPING EXERCISE

Stage One: Scoping pro-forma

2.4 The scoping exercise comprised 3 pro-forma for completion by each of the identified secure units in Scotland. The purpose behind the pro-forma was to obtain a snapshot of the numbers of people currently accommodated with a learning disability and/or ASD, the methods available for identifying and assessing the needs of this group of people, and the services available.

2.5 The 3 forms comprised:

• A Unit Profile Form. This was concerned with background information about the secure setting including the function of the unit, the level of security and staffing.
• A Unit Recording Form. This form focused on the numbers of people currently in the setting with a learning disability and/or ASD, and the ways in which people are identified, assessed and their needs met.
• Individual Level Case Recording Forms. Following the completion and return of the unit recording form anonymised case recording forms were sent to the units for completion for a sample of individuals. The case recording forms provided background information on the characteristics and needs of individuals. They were also a way for describing how unit level processes for identifying, assessing and responding to need were applied in individual cases.

2.6 To reflect the different environments the unit profile and unit recording form were adapted for each of the 3 settings: in-patient units, prisons, and secure accommodation for children. The core questions however, remained the same. The case recording form was standard across all 3 settings, with some questions included for completion 'as appropriate' to the setting.

2.7 A covering letter and guidance notes accompanied the forms. The guidance notes addressed the criteria for including people for the purposes of the unit and case recording forms. These criteria are reproduced in figure 2.1. A brief description of some of the characteristics associated with people with learning disabilities and autistic spectrum disorders was also provided ( see Annex 1). Respondents were, however, discouraged from actually undertaking assessments solely for the purposes of the research.

2.8 The covering letter recommended that the forms were filled in collaboratively with other disciplines/professions.

2.9 Unit profile and unit recording forms together with guidance notes were sent to identified key informants in all units in February 2003. Respondents were given 2 weeks to complete and return the forms.

2.10 Case recording forms were sent out when the earlier forms, indicating the number of people with learning disabilities and/or ASD currently in the unit had been returned. A 3-week response time was provided.

Stage One: Unit sampling

2.11 The Scottish Executive specification for the research required that the study include the 16 prisons in Scotland, the 11 wards on the State Hospital site and the 6 secure accommodation units for children in Scotland.

2.12 The tender submitted proposed extending the sample for stage one of the study to include secure in-patient accommodation. The focus was intended to be those in-patient units providing a 'step-down' from (or potentially step up toward) the State Hospital. Because of the difficulties of defining 'secure' in a hard and fast way the sample was subsequently further extended to include not just 'forensic' units, but also units accommodating people with learning disabilities and/or ASD with offending/offending behaviour or who were a risk to themselves and/or others. This includes some units for people with 'challenging behaviour'. It also includes 2 Intensive Psychiatric Care Units (IPCU).

2.13 For the prisons and secure accommodation for children a 'unit' comprises the whole institution. For the State Hospital and in-patient accommodation a 'unit' comprises the wards providing care in a secure, forensic or other specialist setting for people with a learning disability and/or ASD. The numbers of units included within stage one of the study are indicated in table 2.1.

Table 2.1 Stage One: Secure settings by type

Stage One: Individual case recording form sampling

2.14 Case recording forms (CRFs) were designed to provide anonymised information on a sample of children, young people or adults, who met the study criteria for inclusion (see above). To provide a sample of people from each of the different types of unit without also overburdening staff in specialist learning disability units a 2-track sampling strategy was developed.

2.15 In relation to the prisons, secure accommodation units for children and psychiatric units and wards forms were distributed for completion for each individual currently resident who had been identified as having a learning disability and/or ASD.

2.16 In relation to the specialist in-patient learning disability units only a sample of wards was selected. In addition to the specialist learning disability ward on the State Hospital site, these units were selected on the basis of information collected from the unit profile and recording forms which suggested that they were a 'step down' from the State Hospital. Within each of these wards a case recording form was to be completed for every fourth person on the current ward list.

Stage One: Distribution and response rate

2.17 Prison pro-forma were distributed to the Governors in Chief. Pro-forma for the secure accommodation for children and in-patient units were distributed to identified key informants.

2.18 The number of forms distributed and completed by type of unit is illustrated in table 2.2.

Table 2.2 Distribution and response rate for unit forms and case recording forms by type of secure setting (including pilot forms returned)

Note
⁽¹⁾ Four CRFs were returned blank: 3 because people had moved on; one because, after further discussion within the prison, the person concerned was felt to have a learning difficulty rather than a learning disability. A further 7 CRFs (6 from one prison) were completed but not received by the project

2.19 Given the number and length of the forms, the response rate is very high, and, in the case of the case recording forms would have been higher if 7 completed forms had been received by the project.

2.20 What did become apparent was that despite respondents being encouraged to complete the forms collaboratively rarely did this appear to occur. In the prisons, for example, the majority of forms were completed by health centre staff. Arguably, within a prison context, these professionals would be key to the process of identifying and assessing people with a learning disability and/or ASD. However, social work staff may also be aware of individuals who may not be known to the health centre. This potentially underestimates the numbers of people identified. Indirectly it also points to the limits to joint working and information sharing in these environments.

Stage One: Social Enquiry Report analysis

2.21 Prior to sentencing courts can, and under certain circumstances are required to request social work departments to prepare a Social Enquiry Report (SER) on an individual. Potentially these can be a way of flagging up early on that a person has a learning disability and/or ASD. The case recording forms included questions aimed at identifying whether an SER had been prepared, whether respondents had had sight of the report and whether the reports had indicated whether the individual had a learning disability and/or ASD. To supplement this data a sample of 16 SERs prepared over a 12-month period by 2 local authorities were reviewed.

STAGE TWO: CASE STUDIES

Stage Two: Case study objectives

2.22 The objectives of the case study stage of the project were 2-fold:

• To provide an overview, building on the information collected in the course of the scoping exercise, of the mechanisms for identifying, assessing and supporting people with learning disabilities and/or ASD in 7 secure settings
• To explore, through interviews with people with learning disabilities and/or ASD, keyworkers and, where appropriate, families, their perceptions and experiences of the ways in which secure settings identify and are able to respond to need.

2.23 Using a semi-structured interview approach the aim was to explore the perceptions of 3 groups:

Service managers in each institution
Service level staff including health (medical, nursing, psychology and PAMs), social work/social care, education and security staff
The person with a learning disability and/or ASD, their key worker and (where appropriate) members of their family

Stage Two: Design

2.24 Based on the project's core themes of identification, assessment, service response, service gaps and forward planning 5 topic guides were developed:

User Topic Guide
Keyworker Topic Guide
Family/Welfare Guardian Topic Guide
Service Managers' Topic Guide (including one especially adapted for the State Hospital)
Service Level Staff Topic Guide

Stage Two: Sampling

Unit sample

2.25 The specification for the project required the inclusion of 7 units as case studies including: The State Hospital; Rossie and St Mary's Kenmure secure accommodation units for children; and 4 prisons to be selected on the basis of the findings from the scoping exercise, but to include establishments holding women, young offenders, sex offenders and prisoners serving short sentences.

2.26 Using the data supplied on the unit recording forms 3 State Hospital wards were selected for more detailed study:

• Cromarty Ward, for people with learning disabilities
• Earn Unit, comprising rehabilitation flats, including provision for 4 people with learning disabilities and/or ASD
• Alexandra Ward, the one female ward on the site, accommodating both women with mental health problems and those with learning disabilities and/or ASD

2.27 The 4 prisons were selected on the basis both of the criteria indicated above plus they currently contained people who were believed to have a learning disability and/or ASD. These comprised:

• HMP Edinburgh - Male young offenders (remand and convicted); male adult offenders (remand and convicted). This prison was used to pilot the interview schedules
• HMP Cornton Vale - Female young offenders (remand and convicted); female adult offenders (remand and convicted)
• HMP Perth - Male young offenders (remand and convicted); Male adult offenders (remand and convicted)
• HMP Peterhead - Male, adult convicted sex offenders

Person-centred samples

2.28 From the case recording form sample it was proposed to identify a small number of individuals with a learning disability and/or ASD (who were aware of their diagnosis) to obtain a more detailed analysis of individual experiences. It was intended to interview the individual, their key worker, and where appropriate, members of their family. While it was hoped to use criteria to 'select' the sample, in terms, for example, of diagnosis and gender, in practice, the limited numbers of people identified in some settings did not make this practicable.

2.29 Nine 'users' were interviewed, including one woman. Six key-workers took part in a telephone interview. A total of 6 relatives were approached to take part in a telephone interview, but only one agreed to take part. To protect the anonymity of relatives sealed letters were addressed and sent by the secure settings. It is therefore not known why the majority did not respond. The sensitivity of the subject matter may be one explanation.

Stage Two: Obtaining informed consent

2.30 Ethical approval was obtained from the Multi-Centre Medical Research Ethics Committee for Scotland, and from 5 Local Medical Research Ethics Committees.

2.31 As part of ensuring informed consent on the part of individuals with a learning disability and/or ASD, consent forms, information sheets and a covering letter were designed to be as easily understandable as possible. Advice on the wording and layout of the consent form was also obtained from a speech and language therapist via a Research Advisory Group member. To meet the requirements of Section 5 of the Adults with Incapacity (Scotland) Act 2000 (AWIA) an information sheet and assent form were designed for the appropriate proxy. A letter, information sheet and consent form were also developed for relatives.

2.32 To protect the anonymity of people who did not want to take part a 2-step procedure for obtaining consent was developed and implemented. Key workers were supplied with the consent forms and accompanying documentation and asked to go through these with the individual concerned. If the individual then agreed to take part the researchers were informed. In the course of the site visits the individuals were invited to be interviewed. Before the interview commenced the consent form was again discussed with the individual who was given an opportunity at that point to either consent or withdraw.

DISCUSSION

Ensuring informed consent.

2.33 A number of authors have commented on the ethical difficulties, including ensuring informed consent, of involving people with learning disabilities in research (Brown and Thompson, 1997; Stalker, 1998). As described above, a rigorous procedure was adopted by the study to enable people to consent or withhold their consent from taking part in the research. On each occasion consent was given by the users approached (no one refused). However, a lingering doubt remains as to how much people really understood what 'research' was, or what this project in particular, was seeking to achieve. This doubt was fuelled by misunderstandings, despite repeated assurances on the part of the researchers, that the interview was part of a parole or transfer process, or would effect their own circumstances.

2.34 In addition, as noted by Hayes (2002, in Lindsay, 2002) this is very much a 'captive' audience. In this respect giving key workers (and this could be a social care worker, a nurse, or a personal officer in a prison) the task of first contact can have both advantages and disadvantages. On the one hand the people approached could withhold consent without being made known to the researchers. On the other hand, the environment may compel people to feel they have to take part. The procedure for going over the consent form again with the individual, prior to starting the interview does, however, provide another opportunity for people to withhold their consent.

2.35 These difficulties should not, however, be regarded as insurmountable, or a reason for not including people with learning disabilities and/or ASD in research such as this. It is important that people with learning disabilities and/or ASD are given a voice to describe their experiences and express their perceptions and views.

Estimating prevalence

2.36 It was not proposed in either the research specification issued or the research tender submitted to undertake assessments across a sample population to identify the prevalence of learning disabilities and/or ASD. As noted above, respondents were asked to indicate those people for whom an assessment/diagnosis had been made, or whose past histories, strongly suggested a learning disability and/or ASD.

2.37 Discussions with units in the course of distributing and discussing the pro-forma and during site visits, raised questions as to the complete accuracy of the numbers, particularly outwith health care settings. First, despite encouraging disciplines and professions to collaborate in completing the forms, this does not appear to have occurred routinely. As already noted this may reflect existing patterns of joint working and information sharing. It may also reflect the realities of these environments that make it impractical to expect this level of collaboration outwith day to day practice.

2.38 Second, discussions also revealed that within prison environments in particular the numbers of people formally identified may only be a proportion of the people who are 'known' or believed to have a learning disability and/or ASD but who have, to the knowledge of respondents, never been formally assessed. As a result, while the figures identified may appear low, they may be an accurate picture of people formally assessed, but an underestimate of a larger group of people with learning disabilities and/or ASD.

2.39 As discussed in chapter 1, there are difficulties in defining 'learning disability' and assessing prevalence. These difficulties may be magnified in relation to adults with ASD.

2.40 To try and estimate the numbers beyond those who have been formally assessed or diagnosed as having a learning disability and/or ASD using the type of indirect method employed in the current study may risk the inclusion of people who, for example, are unable to read or write for a multitude of reasons, or who are affected by a history of drug or alcohol misuse, or who have a range of behavioural problems. To ensure a more reliable estimate of prevalence may therefore necessitate systematic assessment of a sample population using validated methods.

2.41 The figures indicated in the following chapters can therefore be regarded as indicative of the numbers assessed as having a learning disability and/or ASD, rather than definitive of the prevalence rate of all people who, if assessed, may be found to have a learning disability and/or ASD. The research is therefore not a prevalence study.

• The study comprised 2 stages: A quantitative scoping exercise across 57 secure settings; and qualitative case studies of 7 units
• 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. SERs 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 of the study comprised in-depth analysis of 7 settings through interviews with service managers, staff, people with learning disabilities and/or ASD, and their key workers. One relative also took part in an interview
• The study draws attention to the difficulties of ensuring informed consent on the part of people with learning disabilities and/or ASD to participate in the research
• The design and methods employed established the numbers of people identified or assessed as having a learning disability and/or ASD across the different the secure settings. The perception was held, particularly by prison staff and managers, that there was, in addition, an indeterminate number of people who had a learning disability and/or ASD who had not been identified. This meant that it was not possible to determine prevalence rates

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