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

CHAPTER FOUR HOW MANY PEOPLE?

HOW MANY PEOPLE?

4.1 One of the main aims of the research was to estimate how many people were currently accommodated in the selected secure settings. The literature review ( chapter 1) underlined the difficulties of measuring prevalence: different measuring tools and different criteria generate different results. Health and social care policies as well as criminal justice policies will also influence prevalence rates making comparison across and within countries difficult. These complexities are compounded in relation to people with autistic spectrum disorders, particularly adults (MRC, 2001; PHIS, 2001).

4.2 The approach used in the current study, described in chapter 2 was to ask respondents in each secure setting how many people were currently resident who had been formally assessed or diagnosed as having a learning disability and/or ASD, or whose past histories strongly suggested the person has a learning disability and/or ASD. This approach relies heavily on the ways in which people are identified. As discussed in chapter 3, although there are a number of different mechanisms or processes that may assist to identify people, they can be ad hoc and unconnected, leaving some people to fall between service 'nets'. It is against this background that the numbers identified in the course of the scoping exercise have to be interpreted and understood. Table 4.1 summarises the responses for each type of secure setting.

Table 4.1 Number of people assessed/diagnosed as having a learning disability and/or ASD by type of secure setting

Note
⁽¹⁾Described as 'ASD other' on the pro-forma

4.3 The method used by the research revealed a total sample of 216 people with learning disabilities and/or ASD in secure, forensic or specialist settings. Not surprisingly, the in-patient units for people with learning disabilities account for the lion's share.

4.4 Only a very small proportion of the total identified had a diagnosis of ASD only i.e. did not also have a learning disability. If people with ASD 'only' and those with a 'dual' diagnosis of learning disabilities and ASD are combined they comprise just under 20% of the total sample.

4.5 Focusing on specific settings, the data suggest that out of an average daily prisoner population of 6475 (Scottish Prison Service, 2003), only 19, or around 0.3% were identified as having a learning disability and/or ASD. This proportion, which includes people with ASD, is lower than Gunn et al's (1991) comparatively low estimate of prevalence of 0.4% for sentenced adult males with a learning disability. Further, the numbers of those identified are not distributed evenly across the estate: half of the prisons had no-one currently who met the study criteria. Of the remainder one prison alone accounted for 6 out of the 19.

4.6 The secure accommodation units, too, appear to have identified only a small proportion of children with a learning disability and/or ASD. Although 2 units did not complete the study's forms, informal discussions with these units suggest that neither had children or young people who met the criteria at that time. On this basis only 3% of children or young people, out of an estate of 96 places, were identified as having a learning disability and/or ASD.

4.7 A small, but, in policy terms, significant number of people were also identified in psychiatric in-patient units. This includes Intensive Psychiatric Care Units (IPCU), the mental health wards on the State Hospital site, and psychiatric units including those which, formally at least, specifically exclude people with learning disabilities.

ISSUES ARISING FROM THE NUMBERS OF PEOPLE IDENTIFIED

4.8 Table 4.1 raises 3 issues. First, the apparently small proportion of people across the prison estate identified as having a learning disability and/or ASD. On the one hand, the data suggest that there are few people with moderate to severe learning disabilities within prison settings. On the other hand, discussions with respondents as the study's forms were being returned and subsequently in the course of site visits suggest that this figure may represent only a proportion of a larger number of people with learning disabilities and/or ASD throughout the prison estate. This includes people who are informally 'known' or believed to have a learning disability, but who have not been formally assessed or diagnosed, or not known to have been formally assessed. The comparatively high number of people identified in one prison where the forms were completed by a nurse with specialist qualifications in learning disabilities appears to confirm that the numbers are an under-estimate. As described in chapter 3, there is a lack of systematic information available to the prisons to more accurately assess the numbers involved. In one unit, for example, health care staff described how they might "hazard a guess" that someone had a learning disability, but there may be nothing in their casenotes. In another unit the comment was made on a unit recording form that "it would be difficult to get this accurately without trawling through the notes of everyone ever in".

4.9 Using specifically defined inclusion criteria and a reliance on the knowledge base and familiarity of respondents with the prison population, the research has been unable to pin down this apparently floating population beneath the surface. As suggested in chapter 2, to inform strategic policy there may be an argument for assessing a sample population with validated tools in order to be able to estimate more accurately the prevalence of learning disability and/or ASD among the prisoner population. In terms of operational policies and practices, as chapter 3 has argued, there are issues around accurate screening and identification, including information sharing and joint working within these settings.

4.10 Second, although only a small proportion of children and young people were identified by the secure accommodation units for children, from interviews and discussions there is not the same sense of the figures representing a small proportion of a larger pool of people with learning disabilities and/or ASD. Potentially there may be others who are unidentified, particularly given the multiple needs that children referred to secure care often present. A respondent in one secure accommodation unit also felt that the number of children with Asperger's syndrome was not really known. The perception among respondents, however, was that those with a learning disability and/or ASD would either be identified before admission to the secure setting, and, in the case of one unit "are not ordinarily taken", or would be identified through assessments once admitted.

4.11 The third issue raised by table 4.1 is the small, but not insignificant number of people identified as having a learning disability and/or ASD accommodated in secure, forensic or other specialist in-patient settings for people with mental health problems. Several factors may account for this finding.

4.12 First, a number of people within the sample had both a learning disability and a mental health problem. It may therefore not be inappropriate for someone to be placed on a psychiatric unit. Second, inconclusive or inaccurate diagnosis at the time of admission may result in people being "misplaced". For example, one person was admitted to a forensic psychiatric in-patient unit with a diagnosis of "chronic schizophrenia". It was the unit which, following assessment, identified the person as having a learning disability.

4.13 A third reason may be the lack of appropriate alternative facilities. This may result, for example, in someone requiring secure care being accommodated "inappropriately" on an IPCU.

4.14 On the State Hospital site, the one female ward cares both for women with mental health problems and those with learning disabilities. Earn Unit, a rehabilitation ward on the hospital site accommodates 4 people with a learning disability moving on from the specialist learning disability ward, together with 14 people with mental health problems.

4.15 The issues of service delivery and of service gaps raised by this use of psychiatric resources are addressed in chapter 7 below.

KEY POINTS

• 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 the questions raised earlier concerning the processes for identifying and assessing children, young people and adults prior to and post-admission to a secure setting

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