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

CHAPTER SEVEN MEETING ASSESSED NEEDS

7.1 People may have their needs assessed but to what extent do secure settings have access to the resources to meet these needs? This chapter begins to address this question in 2 ways. First, by looking at the perceived appropriateness of the different environments for people with learning disabilities and/or ASD. Second, by describing both the range of services available in each setting and the perceived gaps in the web of care, treatment and support.

THE APPROPRIATENESS OF THE SECURE SETTINGS

The prisons

7.2 SPS is obliged to hold in custody securely and safely all those incarcerated by the Scottish courts. At one, level therefore, whether or not prison is perceived by respondents as an appropriate environment for people with learning disabilities and/or ASD, it is a legal requirement for them to be there if they have been remanded to prison or given a custodial sentence.

7.3 Notwithstanding this legal context, the dominant theme emerging from the recording forms and from discussions in the course of site visits was the perception among prison respondents that, in general, prisons were not the most appropriate place for people with learning disabilities and/or ASD who engage in offending behaviour. But, it was suggested, for some people, in the absence of alternative resources, it may be the only environment.

7.4 A number of respondents suggested that the prison environment can provide a degree of routine and support otherwise lacking for some people. The view was also expressed that a period of imprisonment might help some people to understand the consequences of their offending. On the other hand, the lack of appropriate resources can mean that prisoners with a learning disability and/or ASD are not able to address their offending behaviour: the prisons may contain, but not reduce the risk. Further, individuals who are vulnerable may be held on protection or segregation wings, or locked in their cells for long periods, as in the following example:

"Both [people with learning disabilities] get bullied - their behaviour probably leads to that. For example, X becomes an object of fun..he only knows how to deal with it up to a point, then he doesn't know how to deal with it, which means being up behind his locked door for long periods. It helps to keep him out of trouble, but doesn't provide treatment or support for him."

7.5 Prisons may also struggle within existing resources to meet the individual care needs of someone with a learning disability and/or ASD.

7.6 This sets in context the finding that of the 9 prisoners for whom case recording forms were completed 5 were regarded as inappropriately placed in prison and 8 were considered vulnerable: at risk from bullying, sexual abuse or being manipulated by other prisoners.

Secure accommodation for children

7.7 In the context of secure accommodation for children the concept of 'appropriateness' has 2 meanings. First, whether the structure, function and operation of the unit are appropriate for any child or young person with learning disabilities and/or ASD. Second, whether the unit is appropriate to meet the needs of a specific child or young person with learning disabilities and/or ASD.

7.8 One secure accommodation unit suggested that in terms of the physical environment and the focus and approach of its working methods, it would not be a suitable environment for a child with learning disabilities and/or ASD, particularly if the learning disability was of a severity that the child could not function independently.

7.9 In a second secure accommodation unit it was the specific configuration of the child or young person's needs or abilities that might determine whether the unit was appropriate or not: not the presence of a learning disability and/or ASD, per se.

The State Hospital

7.10 For the State Hospital respondents 'appropriateness' also had 2 dimensions: whether or not the individual requires conditions of high security; and whether the resources available on site were sufficiently adaptable or responsive to the needs of people with learning disabilities and/or ASD.

7.11 Learning disabilities are included within the definition of mental disorder in both the current Mental Health (Scotland) Act 1984, and in the new Mental Health (Care and Treatment) (Scotland) Act 2003. As such the State Hospital as a hospital providing conditions of high security for people with a mental disorder is, in a legal sense, an appropriate environment for people requiring that level of security.

7.12 An on-going issue, however, for the State Hospital is the number of 'entrapped' patients. These are defined by the hospital as people who have been clinically assessed as ready for transfer to a less secure environment but who have been waiting for somewhere to become available for 3 months or more. Data made available by the State Hospital indicate that at the beginning of April 2003, 13 patients of the learning disability service had been assessed as ready to move on. A further 6 restricted patients were awaiting transfer. Of the sample of 11 people for whom case recording forms were completed as part of the study 3 had been assessed as appropriate for moving on but were still waiting for resources elsewhere to become available.

7.13 For a number of the State Hospital respondents, it was not just a question of the appropriateness of the State Hospital for specific individuals, but whether the hospital was an appropriate environment for people with a learning disability and/or ASD per se. This argument was couched in several ways. First, the view was expressed by professionals based on the site that only a small number of people with learning disabilities and/or ASD required the conditions of high security provided by the State Hospital. It was felt that, with appropriate levels of staff and other resources, the majority could be accommodated in local secure units.

7.14 Second, the point was made that many of the activities and therapeutic interventions available on site were designed around the needs of people with mental health problems. Although, as discussed below, more opportunities were being made available through increased specialist input, State Hospital respondents felt that there was not such an immediate linkage with the range of other supports that people with learning disabilities and/or ASD require, including social, educational and housing needs. Meeting the needs of people with ASD was also still felt to pose a challenge.

7.15 A further issue raised by State Hospital staff concerned the mix of people with mental health problems and those with learning disabilities and/or ASD not just on the same site, but in some cases on the same wards. It was suggested that not only may people with learning disabilities be vulnerable to exploitation by other patients on a mixed ward, it may also mean they do not have the same access to specialist resources as people on the learning disabilities unit.

7.16 Some of these same arguments were used both in relation to women on the State Hospital site in general, and women with learning disabilities and/or ASD in particular. It was suggested that the majority of women did not require to be cared for in conditions of high security, but needed "special intensive care".

7.17 On the one hand it was suggested that mixing women with learning disabilities and/or ASD and those with mental health problems on the one ward for women on the State Hospital site meant that women with learning disabilities were not further marginalised or stigmatised. On the other hand, their different care needs could pose significant management problems for the clinical team. As one respondent commented:

"The ward has 12 women who have mental illness and 3 or 4 with a learning disability which pulls the Team apart in terms of skills and models of care. It is difficult in a clinical setting."

7.18 The routes by which women are admitted to the hospital are also dissimilar. Unlike women with mental health problems, women with learning disabilities and/or ASD are far less likely to come through the criminal justice system.

7.19 As a result the State Hospital resources designed with one set of needs and one gender in mind i.e. men with mental health problems, have to be adapted, not just for women, but for women with learning disabilities and/or ASD.

Other health care settings

7.20 Out of a sample of 20 people in in-patient units for people with learning disabilities for whom case recording forms were completed only 4 were felt by staff to be inappropriately placed. Within this group the environment was felt to be producing disbenefits for 2 people either because it was more restricted than the one from which they had been transferred, or because they were learning inappropriate behaviours. The remaining 2 people were felt to be inappropriately placed because of specific needs such as challenging behaviour.

7.21 For one additional person the placement was felt to be appropriate for meeting their healthcare needs and for the managing their challenging behaviour, but because of their autism they were felt to require a placement in a specialist unit.

7.22 Of the 6 people with learning disabilities and/or ASD in the psychiatric units, 4 were felt by staff to not be in the right place. In 2 cases it was stated that this was specifically because the units concerned were not set up for, or staff trained in, learning disabilities. The remaining 2 people were felt to need a different living environment: one in the community and one in a secure but more domestic setting.

7.23 A distinguishing feature of the 2 people for whom the environment of a psychiatric unit was felt by staff to be appropriate was that both had ASD. It is too small a sample to draw conclusions, but it may suggest that in-patient psychiatric units feel they have more to offer people with ASD, particularly Asperger's or high functioning ASD, than they do for people with a learning disability.

Discussion

7.24 The 'appropriateness' of all of the selected secure settings hinges on 2 overlapping dimensions: context and resources. 'Context' relates to the perceived core role or function of the secure setting, and the extent to which people with learning disabilities and/or ASD fit into the institution's 'core business'. The data suggest that there are a number of ways in which people with learning disabilities and/or ASD do not fit in to the secure environments within which they are placed. For example:

• In non-healthcare environments whose 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
• Healthcare settings in which the focus is on mental illness
• People with learning disabilities and/or ASD in a healthcare setting such as the State Hospital which may provide care in conditions of security higher than required
• Women with learning disabilities and/or ASD across all the secure settings for adults
• Children, young people and adults with ASD across all secure settings

On the basis of the evidence it could be argued that across the selected secure settings, people with learning disabilities in general, and women and people with ASD in particular, are on the periphery, or borderline, rather than the central focus of these environments.

7.25 Respondents perceptions of the appropriateness of an environment may also depend upon what is or is not available 'in-house' and what is or is not available outwith the secure setting. For example, respondents described the State Hospital or prison as appropriate in the absence of suitable alternative accommodation outwith these environments: a second best, if not a best fit.

7.26 Given the 'minority' status of people with learning disabilities and/or ASD across the different secure settings, the following sections explore in more detail the resources the different environments can draw upon to meet the needs of this group of people and also the gaps in provision.

MEETING NEEDS IN SECURE SETTINGS: ADAPT TO PROVIDE

7.27 The resources available in each setting include 'direct' services such as the availability of appropriately trained staff, activities and therapeutic interventions, and 'indirect' services, for example, the physical and social environment, the time made available for individuals and the awareness and understanding of staff.

7.28 Within each setting the particular configuration of direct and indirect resources will be distinct, though the needs they address may be similar.

Meeting need in the prisons

Services to meet needs

7.29 A the time of the study all the prisons had a healthcare centre and 11 of the 16 had a mental health team. The mental health teams comprised health care centre staff, for example RMN and RMHN trained nurses, social work staff, prison medical officers and visiting psychiatry. Day care places for vulnerable prisoners were available in 3 prisons, and in the process of being developed in one. In-patient beds, including observation cells in the prison health centre were available in 6 prisons.

7.30 The majority of prison nursing staff, whatever their specialist backgrounds, were employed as practitioner nurses undertaking the range of generic healthcare duties. However, over one-half of the prisons had health care staff with training or expertise in learning disabilities and/or ASD, the majority of whom were nursing staff. Although functioning as generic nurses their specific expertise or skills may still be utilised. One prison, for example, described the RMHN as a "well used resource…able to contact practitioners outside and [know] what questions to ask". Another prison had appointed a number of RMHNs who were not only able to assist in the identification and assessment of people with learning disabilities, but also to work with them and with prison officers to provide support.

7.31 Across the prisons the core direct care for people with learning disabilities and/or ASD was the support provided on a day to day basis by the prison health care staff, whether acting as 'generic' nurses or in their role as members of a prison mental health team. This is illustrated by the case recording form data. Physical health care, for example for epilepsy or asthma, was provided by the prison health care staff. Mental health care needs were being met by members of the health care staff functioning as a mental health team. This care might include one to one counselling or "on going support: brief intervention". For one person whose behaviour included banging on their cell door for 4 to 5 hours nursing staff provided "diversional therapy".

7.32 The procedures relating to ACT, the prison service suicide prevention strategy, had been applied in relation to a number of the sample who had a history of self-harm.

7.33 One prison had set up a day care group run by an OT and a prison officer to help people who find it difficult to understand prison routine. The group included people with learning disabilities.

7.34 To address offending behaviour another prison ran an adapted programme for sex offenders. The programme was intended for people who were unable to take part in the core sex offenders programme STOP, because they had an assessed IQ of less than 80. In another prison the forensic psychologist had undertaken one-to-one work on anger management with 2 women with learning disabilities.

7.35 Social welfare needs were met by the prison social work departments, particularly in terms of planning for liberation, but also, as in one case, for "constant reassurance". In this case the prison social worker was responding to referrals being made by the person "virtually every day". In addition the social worker had had a lot of contact with the community-based social worker for the prisoner's ex-partner.

7.36 The prison based learning centres or education departments were seen as responsible for meeting education/training needs. Within the sample one person whose needs were identified as "structured participation in educational routine" was taking part in education "enjoying mainly creative activities". Although it had not occurred in practice the education centre in one prison described how it would be able to draw on the resources of the parent college's Access Centre if someone with a learning disability needed special input.

7.37 Several prisons described how they would aim to tailor interventions or activities to meet the individual's needs or in ways the person would understand. This is illustrated in the account of one prison health care respondent:

"If [someone has] a learning disability or is vulnerable it can be difficult to find something appropriate. So [we] hold a case conference or identify specific needs and identify appropriate activities e.g. craft shops, specialist painting jobs, physical work placement, simple work placement..so can find a range of individual and structured routines they can cope with and can change activities until we find one thing that suits. [We] can split the routine over a week so they can attend education on some days, work programmes and activities on other days. So routine can effectively become the course of treatment."

7.38 Respondents in 2 other prisons described how people with learning disabilities might be given more "sheltered" jobs such as "passman" or cleaning jobs. These tasks perform the dual function of enabling people to get out of their cells, but also brought the individuals into contact with staff "so they won't be bullied" by other prisoners.

7.39 Indirect resources include accommodating people in protection or segregation wings, or in the health centre, for part or all of the day, if they are unable to cope with a mainstream hall.

7.40 The one 'resource' that respondents across prisons and disciplines felt people with learning disabilities and/or ASD needed was time. Nurses described how they would spend time trying to explain things, or help people, whose retention of information may be poor, to understand things. A social worker described the need for "patience". In one health centre time was seen as perhaps the only specific resource that was made available for people with learning disabilities:

"[Nurses] look after individuals' basic health, attend ACT case conferences, supervise their medication and will see them if they have other problems. But that's it. Otherwise they get the same as other prisoners. But if issues arise they will spend a lot of time with them."

7.41 Another health care respondent suggested that while people with learning disabilities and/or ASD comprised only a small percentage of the total prison population they needed a disproportionate amount of nursing input.

Service gaps

7.42 The problem is that time and patience may be in short supply.

7.43 However committed to meeting the needs of this client group staff within the prisons may face competing imperatives. Health care staff in several prisons commented that the size of the prison population did not give scope for intensive input. One prison healthcare respondent made the point that:

"[Nurses] will spend more time with both men because of their problems. So will their Personal Officers, but it is limited. There may only be 2 nurses on duty to provide for 320 prisoners."

7.44 As this comment suggests, the impact is not just on healthcare staff, but on prison officers. Personal Officers, allocated to convicted prisoners on long sentences for sentence management, may spend longer with someone with a learning disability and/or ASD, but they may also have responsibilities towards 5 other prisoners. Hall, or wing officers, too may have limited capacity to respond to the specific needs of people with learning disabilities:

"There is such a pressure on staff to deliver other things that they can't put in the level of input that people need. So, if they are working with someone who needs constant watching and the staff member has to go off to do something else, then the person may have to be locked up because they don't have that level of resource intensiveness."

7.45 As a result, people with learning disabilities and/or ASD are at risk of losing privileges available to other prisoners, not because of indiscipline, but as a result of needs arising from having a disability.

7.46 The other component of 'time' relates to the length of time people are in prison. For people on remand or short sentences there is even less scope for services to respond. Several people, for example, were described on the case recording form as having a whole range of social welfare and education/training needs but "due to short sentence few can be addressed". For women, in particular, the short time periods they were in prison precluded what could be usefully provided by the different resources such as education, psychology and nursing.

7.47 Respondents also felt that there was a lack of expertise to draw on. Several mental health trained nurses felt that "lacking a background" they did not know what treatment would be useful for a prisoner with learning disabilities. They suggested that this was an area where an RMHN would be helpful. Three people were felt by staff to need input from forensic learning disability nurses to help them address their mental health needs, but this service was not available.

7.48 A further direct care service gap identified was the lack of clinical psychology input both for assessment/diagnosis and for treatment.

7.49 It was not just specialist clinical expertise that was identified as a gap, but a need for greater awareness of learning disabilities and/or ASD across staff groups within the prisons. Several prison health care respondents, for example, made the point that awareness of learning disabilities and/or ASD needed to be greater among prison officers. RMHNs in several prisons described how they would advise hall staff on how to communicate with someone with a learning disability so that they would understand what was expected. Without this level of understanding officers might take "firmer action", or people may become "alienated" by other staff. As commented by health centre staff in one prison:

"The [hall staff] have a difficult enough job but dealing with those that don't learn makes it even more difficult. There is a possibility that the 2 men are alienated by other staff."

7.50 A further service gap relates to the generic programmes used within the prisons to address offending. Using group methods, and written work, the programmes were not suitable for people with learning disabilities (or for people who are unable to read and write). Even the Adapted STOP programme for sex offending was not suitable for everyone. As described by one prison officer:

"One person had a low IQ and was impulsive but had limited retention. It was unfortunate because he was keen, wanted to change, but it proved difficult in practice."

7.51 Other programmes may be available at different times, in different prisons, to address different offence related needs, including, anger management, relationships, alcohol, cognitive skills and the social work programme 'Breaking the Cycle' for sex offenders against children. None, however, was adapted for people with low IQs or who could not read or write.

7.52 Unable to address their offending behaviour, the risk of recidivism may be higher: with implications for the person with learning disabilities and/or ASD and, potentially, for society.

Filling the gaps

7.53 Several prisons referred to the lack of policy or anything "written down" to help them address the specific needs of people with learning disabilities and/or ASD. One health care centre described how they "used mental health care and adapted best principles in relation to the individual". In different ways respondents expressed a need for a defined policy, both as a way of ensuring the availability of resources and to increase awareness across the service.

7.54 A need for specialist input, for example a clinic, or direct links with psychiatric specialists in learning disabilities was felt to be required, and more opportunities for one to one working.

7.55 Respondents in 2 prisons, however, proposed more radical options. Staff in one prison suggested that what was needed was a separate hall within the prison for people with learning disabilities and/or ASD and for people with acquired brain injury. This would have access to different programmes and interventions and have a different regime. In a second prison it was felt that what was needed was a "halfway house" between the conditions of high security of the State Hospital, and local secure units, providing one to one individualised care in a secure environment.

7.56 Both suggestions beg a number of questions, not just practical ones, but also broader questions of social justice and social inclusion for people with learning disabilities and/or ASD. Nonetheless they do reflect the concerns of the respondents about the capacity of the prisons to be able to adapt available generic resources to meet the needs of this 'minority' population.

Meeting needs in secure accommodation for children

Services to meet needs

7.57 Of the 4 secure care units for children responding to the unit recording forms, 3 had staff who were believed to have training or specialist expertise in learning disabilities. This included a clinical psychologist and educational psychologist, a forensic psychiatric nurse and 2 teaching staff.

7.58 Data from the unit recording forms, case recording forms and site visits to 2 secure accommodation units suggest that to meet the specific needs of children or young people with learning disabilities and/or ASD the secure accommodation units would draw on generic or adapted generic resources, modifying what was already available rather than drawing in specialist learning disability services. For example, there is no reference to referrals to community learning disability teams. Modification or adaptation would also extend to 'indirect' resources such as time and styles of interaction.

7.59 In relation to mental health needs, for example, the approach might include referral to a CPN, psychiatrist or community mental health team, as well as additional care staff supervision. For example, one secure accommodation unit described allocating 3 staff to work with one young person with learning disabilities and mental health needs as a way of trying to establishing communication with the individual.

7.60 To meet physical health care needs, the secure units would use in-house health care such as the unit's nurse, or a local health centre, or make a referral to a "paediatrician with responsibility for looked after children". One nurse commented that although in terms of health care tasks, such as the administration of medication, what they did was no different, they did give "special attention" to the children with learning disabilities and/or ASD. The nurse gave them more time to help them "work through their fears".

7.61 To meet educational and offending-related needs 'tailor made' packages or one to one working were described.

7.62 The approach to children with learning disabilities and/or ASD therefore appears to be one of 'mainstreaming', albeit within the segregated environment of secure accommodation. Within the expressed ethos that "every young person is an individual" the needs of a person with learning disabilities and/or ASD may be regarded as no greater, or no more complex than that of any other young person referred to the secure accommodation unit. One member of care staff remarked:

"All the young people exhibit unpredictable behaviour with some violence or aggression, in some cases worse than those with learning disabilities. Someone with a learning disability would not be treated any different, the care plan is geared towards the young person, their own strengths and needs."

7.63 The question that remains is whether the apparently limited input from specialists in learning disabilities or ASD has implications for the child or young person in both the short and longer term. In the short term there may be scope for specialists to provide advice or consultation on the management of challenging behaviours. In the longer term staff commented on the lack of equivalent resources available to people once they leave the supportive environment of the secure accommodation unit. Linking a child or young person with learning disabilities and/or ASD with local specialist resources may help to facilitate continuity of care.

What is needed

7.64 The service gaps identified by the secure accommodation units included the level of resource available for intensive and one to one working.

7.65 As in the context of the prisons the need to adapt programmes was raised. For the secure accommodation units, though, this means not just adapting programmes for people with learning disabilities, but for younger people in general. One secure accommodation unit in the sample had been awarded funding specifically to develop programmes for adolescents.

7.66 The third gap identified by the secure units was the reduction in the level of therapeutic input for people once they moved on:

"The problem [we are] creating for the future is that we are able to bring young people up to a level of stability to the degree that we can produce measurable change. But it falls to bits whey they leave because they are moving to environments which are not similarly therapeutic."

Meeting needs in the State Hospital

Services to meet needs

7.67 As might be expected, there is a concentration of expertise available on the specialist ward for people with learning disabilities on the State Hospital site. A clinical nurse specialist in learning disabilities (CNS) and a Clinical Psychologist specialising in learning disabilities had recently been appointed to the clinical team. The Consultant Psychiatrist, OT and social worker covering the ward were both specialists in learning disabilities. The number of nurses on the ward with RMHN training was, however, comparatively low, comprising only 5 to 6 out of a complement of 26. The majority of nursing staff were RMN trained. Plans were in place to increase the number of learning disability trained nursing staff. Respondents described the "challenge" of trying to recruit people with this expertise prepared to work in a high secure setting and a "mental health context".

7.68 In addition to the specialist ward the Consultant Psychiatrist, Clinical Psychologist and CNS also provided a service to the women's ward and rehabilitation unit, both of which support people with learning disabilities and/or ASD. It was, however, suggested that "there is no proper support for staff" on the other State Hospital wards which have patients with learning disabilities and/or ASD.

7.69 Historically, the hospital-wide Patient Activities and Recreation Service (PARS) has tended to gear its activities towards the predominantly male population with mental health problems. It was though, increasingly tailoring services to the needs of people with learning disabilities and women both at a group and individual level. PARS vocational unit staff were also contributing to individual treatment plans in ways that had not occurred in the past.

7.70 The Psychological Therapies Service also provides a hospital wide service, but like PARS has tended to gear this towards people with mental health problems. In response, adapted programmes had been developed and were being run by staff on the specialist ward for people with learning disabilities. The first set of adapted programmes focused on sex offending and anger management. Dialectical Behaviour Therapy had also been introduced, initially on to the women's ward, to address self-harming behaviour. The programme is suitable for men and women with learning disabilities.

7.71 A 'positive programme approach' was beginning to be developed both on the specialist ward and on the women's unit. Following a visit to the US to look at the Institute of Applied Behaviour Model employed by LaVigne and colleagues (1989) it was hoped to adapt this model to meet the behaviour-related needs of one person.

7.72 Interviews with key workers and with individual patients did reinforce the sense of people being engaged in a range of different activities: work related, social, educational and therapeutic. As described by one person interviewed:

"I work in the patients' shop, in the garden, woodwork, arts and crafts and school."

7.73 Case recording form data gives a more detailed picture of how secure settings attempted to meet the needs of individuals with learning disabilities and/or ASD

7.74 Physical health care would be "monitored" and needs met by the on-site health centre. Although "well-served" the view was expressed that the service was "not necessarily sensitive to learning disabilities". Recognising that the health care needs of people with learning disabilities are "unique" the specialist ward was looking at ways of improving the service.

7.75 Beyond reference to the role of clinical teams or the "special service of the State Hospital", little information was provided on the mental health needs of people with learning disabilities and/or ASD or on service responses. It may be that in this context such needs are regarded as self-evident, or not distinguished from the range of clinical needs an individual may present, including offending behaviours.

7.76 To meet the range of offence and other behaviour-related needs reference was made to the psychological therapy groups. Difficulties were, however, experienced in relation to meeting the behaviour-related needs of one person in the sample who had autism.

7.77 A similar comment was made in relation to meeting the social welfare needs of a patient with autism. In other ways social welfare needs, including, for example, family contact were felt to be "fully met".

7.78 Although patients had access to on site education services to meet education or training needs the service does not include specialist teachers. The perception held by some healthcare staff was that the service struggled to meet the needs of people with learning disabilities and those with autism.

Service gaps

7.79 To meet the "unique" needs of people with learning disabilities and/or ASD the State Hospital had augmented specialist services and sought to adapt generic resources. Respondents, however, drew attention to what they saw as continuing service gaps or obstacles to meeting needs. Some of these barriers relate to what can be made available on the State Hospital site, others reflect what is, or is not, available for people outwith the State Hospital.

7.80 As a ward for 26 people the specialist unit for people with learning disabilities was felt to be too large. This raised "living together" or risk related issues. This, it was suggested, was compounded by the comparatively low staff patient ratio of 5:26. Both this ward and the ward for women also had to combine the potentially competing functions of admission, continuing care and discharge preparation.

7.81 The combination of people with learning disabilities and/or ASD with people with mental health problems on site and in wards was described above in the discussion concerning the appropriateness of the environment. What it has meant is that site-wide 'generic' services have had to be adapted to meet the needs of people with learning disabilities and/or ASD.

7.82 As was suggested in the context of physical health care and education/training needs there may be limits to adaptability for people with learning disabilities in general, and those with ASD in particular. For example, a class may attempt to teach people how to tell the time to individuals who have no concept of time.

7.83 Even where generic services are adapted they may not be so readily available to people with learning disabilities and/or ASD on some of the mental health wards.

7.84 In terms of social welfare needs, structural factors may impede greater involvement of families. At a strategic level it was suggested that the very fact of being on the State Hospital site meant that access to family and carer involvement was not as high as the service would like for people with learning disabilities and/or ASD. At a practical level, financial constraints may limit family and carer contact. Although funds are available one relative described the financial drain of visiting, particularly since funds for petrol money appeared to have been reduced. For people coming from Northern Ireland the barrier may be raised further by the discretionary nature of payments from the Social Fund to meet travel expenses.

7.85 The perceived service gaps outwith the State Hospital reflect the lack of resources, or an infrastructure, to which people who no longer require to be cared for in conditions of high security can move. The perceived need was not just for an appropriate physical environment, but an appropriate therapeutic and social milieu. The view was expressed by State Hospital respondents that people moving to local secure units may have fewer activities and services available to them than is available on the State Hospital site.

What is needed

7.86 State Hospital staff felt that what was required was a range of resources outwith the hospital providing: an appropriate level of security; access to a range of activities and interventions; linked with a range of housing, education, training and employment resources. This, it was suggested, would not only provide opportunities for people to move on from the State Hospital, but also prevent people being admitted to the hospital in the first place and acquiring the stigma which may exacerbate their social exclusion.

Meeting needs in other health care settings

Services to meet needs

7.87 The in-patient units for people with learning disabilities have a range of specialists in learning disabilities on which they can draw including O.Ts, speech and language therapists, physiotherapists and art therapists. Some staff in these units also have forensic expertise or training.

7.88 By comparison, the unit recording form information provided by the psychiatric units appeared to suggest that the resources available to people with learning disabilities and/or ASD on these units were much more limited. However, analysis of the case recording forms illustrates the diversity of resources which the psychiatric units drew on to meet the needs of specific individuals.

7.89 In learning disability and psychiatric units physical health care needs would be met by ward medical and nursing staff, GPs or specialists such as dieticians. Learning disability units also referred to the availability of well women's clinics, specialist women's health and men's health screening and health promotion.

7.90 People in both types of unit were identified as having mental health needs, including problems relating to alcohol abuse. In learning disability units resources to meet these needs included use of medication, 24-hour supervision, or referral to specialist resources such as a local alcohol misuse service. The psychiatric units would draw on ward medical and nursing staff, as well as referral to specialists in, for example, Cognitive Behaviour Therapy (CBT). One unit described as a resource the specific practices they employed with one person "Uniformity of approach: not invading personal space".

7.91 To meet offending or other behaviour related needs the learning disability units would use a combination of protective and therapeutic approaches. For example, the response to the physical, mental health and offending-related needs of one person was "24-hour supervision to ensure the safety of others". In other cases the service responses included "structured programme of activities". In several cases the protective and the therapeutic were combined; "MDT [multi-disciplinary team] ensure treatment/therapeutic programmes in place to ensure person and others' safety".

7.92 On the basis of a very small sample the response of the psychiatric units to offending and other behaviour-related needs was very individualised. The responses ranged from referral to a specialist learning disabilities group, making available psychology, CBT and group work, and, in one case, joint working with a care manager and voluntary organisation to undertake offence specific work together with a "multi-agency communication and support package".

7.93 For people on both the learning disability and psychiatric units the common social welfare needs identified by staff were isolation and being misplaced.

7.94 For some people on the learning disability units isolation arose from limited family contact. It is not known, how, if at all, this need was being met. For 5 people the social welfare need was for a community-based placement, or 'step down resource'. These resources were not currently available for any of this group.

7.95 For people with learning disabilities and/or ASD in the psychiatric units isolation and being misplaced take on a different meaning. For one person with learning disabilities the 2 were combined insofar it was felt that the individual needed to be with a "peer group of similar ability". Although attending a therapeutic group for people with learning disabilities on another unit it was felt that this person needed a "range of social and leisure opportunities with more suitable people".

7.96 For one person with ASD on a psychiatric unit whose social welfare needs included domestic skills acquisition as well as social isolation, a social care worker had been made available together with involvement in a social group for autistic people.

7.97 A number of people in the learning disability units had identified education/training needs. These were met by OTs, a day hospital and ward staff. In a number of cases this was in the context of a perceived lack of community based education opportunities.

7.98 For people in the psychiatric units the identified education need was for a structured daily programme. This was met by OT led activity programmes or, in one case, a correspondence course. For one person with ASD the identified language and communication difficulties were met by "staff experienced/trained in ASD".

Service gaps

7.99 Just on the basis of the unit and case recording forms it is apparent that the perceived service gaps or obstacles to meeting needs mirror those identified by State Hospital respondents.

7.100 As already noted for a number of people in the learning disability and psychiatric units the significant 'gap' identified by respondents was the lack of appropriate supported 'step down' or community based accommodation In effect this is the second pressure point along the care pathway for people with learning disabilities and/or ASD in secure in-patient care. For some people the absence of move on resources may mean that at some point they are re-routed to a mental health pathway: an environment which may be able to provide care, treatment and support, but which staff may feel leaves the individual socially isolated.

7.101 Other gaps identified by the learning disability and psychiatric units gaps included the lack of interventions and opportunities specifically geared to the needs of people with learning disabilities and/or ASD. For example, to address alcohol misuse, or provide adult education and work opportunities. These problems can be compounded for people with ASD.

7.102 Even where resources are available the extent of input available may be circumscribed in terms of, for example, the number of clinical psychology sessions available or the amount of funding available for social care support for someone placed on a psychiatric unit.

EXAMPLES OF PRACTICE

7.103 Across the secure settings the key strategy for meeting the needs of people with learning disabilities and/or ASD is to adapt whatever is available. Since the study does not address outcomes it is not possible to assess how successful these strategies are. It is though possible to identify examples or accounts of practice that illustrate a sensitivity to individual needs.

• One prison described how they would try and test out different activities until they found something that suited the individual and with which they could cope
• One secure accommodation unit allocated 3 staff to one person to develop a relationship and establish communication
• In relation to people with ASD on the specialist State Hospital unit for people with learning disabilities nursing, OT and PARS staff were working together jointly to develop individualised programmes of activity
• One in-patient unit for people with mental health problems described a joint package of care involving the ward and primary health care staff, criminal justice social work and voluntary organisations to support someone with ASD. The package, which involved the use of CPA included a discharge plan put in place jointly with the local autistic society

DISCUSSION

7.104 This overview does not do justice to the efforts of the secure settings to meet the very specific needs of people with learning disabilities and/or ASD. Nonetheless, 3 very clear themes emerge which suggest that meeting these needs poses a challenge for all the units, with implications for the individuals for whom they are responsible.

7.105 First, with the exception of the learning disability specific units, people with learning disabilities in general and ASD in particular do not fit easily into what is perceived to be the core business of the different secure environments. There is a pervading sense that somehow people with learning disabilities and/or ASD would have their needs better addressed 'somewhere' else. The perceived inappropriateness of the environment stems, on the one hand, from a lack of available and appropriate resources to meet the specific needs of this 'minority' group. On the other hand the nature of the environments can make the individual vulnerable to exploitation, abuse or bullying from their non-disabled peers and/or leave them socially isolated.

7.106 This sense of 'otherness' is compounded in relation to people with ASD, in relation to whom even the learning disability units may be struggling to adapt services.

7.107 Adult women with learning disabilities and/or ASD also emerge as a minority within a minority for whom there may be even fewer options than for men.

7.108 A second theme, following on from the first, was the perceived lack of resources outwith the secure settings, either to prevent admission to a secure unit, or provide a move on or 'step down' resource for someone who no longer requires the level of security of a particular setting, or has come to the end of a sentence or order. When implemented in May 2006 sections 264 - 271 of the new Mental Health (Care and Treatment) Scotland Act 2003 will provide people with an opportunity to appeal against being detained at a level of security greater than required. This may create a further pressure to develop alternative community based services.

7.109 For people in prison or on a hospital or restriction order, or on remand and not convicted, the significant issue may be the availability of support on liberation. The following chapter pursues this in more detail.

7.110 The third key theme is the way in which, within the resources they have available the different settings respond to the individual needs of people with learning disabilities and/or ASD. The data suggest 3 strategies are employed: bringing in or deploying specialists in learning disabilities; fitting people into 'generic' resources; or adapting 'generic' resources. 'Generic' here refers to the services available to the majority population.

7.111 The first strategy is one to which secure settings appear to have least frequent recourse. Outwith the learning disability-specific units and the State Hospital it is not surprising that few of the units have in-house or visiting specialists. Although people may be referred to specialists for assessment/diagnosis or with a view to transfer, there does not appear to be any on-going dialogue with specialist agencies or providers. The one exception was in relation to an individual with ASD in a psychiatric unit. In this instance the unit drew in the expertise of the local autistic society.

7.112 Adapting 'generic' resources, such as programmes to address offending or to meet education, activity or social needs is the most frequent strategy across the units. Here a number of units appeared to be innovative in putting together programmes or packages that were responsive to group or individual needs. There is also a case for saying that by adapting what is available, rather than providing something 'special', the individual is not further excluded. The difficulty is knowing how successful, in terms of outcomes such approaches are. A similar argument can be made in relation to the use of 'generic' resources, such as in-house or site wide education services or giving people less complex tasks.

7.113 Few of the resources described were felt by respondents to be able to meet the specific needs of people with ASD.

7.114 The accounts of the ways in which different settings attempt to meet the needs of people with learning disabilities and/or ASD raise a number of issues. First, the evidence raises questions concerning equality of access to resources. This applies not only to what is available to people within different types of secure setting, but also how this compares with what is available to people with learning disabilities and/or ASD in the community. Second, there are questions about the outcomes the different settings are able to effect. If, for example, the prisons do not have the resources to help people with learning disabilities and/or ASD to address their offending behaviour does this increase the likelihood of the person re-offending and returning to prison? Third, the findings suggest that there is a risk that in seeking to protect people with a learning disability and/or ASD in environments not geared to their needs that individuals may experience indirect discrimination or even potential infringements of their rights. For example, by depriving someone of opportunities for freedom of association in a prison because of their need for supervision or because they may be vulnerable to bullying; or caring for someone in a health care setting in conditions of higher security than they need because of the lack of appropriate services to enable them to move on; or keeping someone in a closed prison while in custody rather than moving them to an open prison which may not have the resources to care or protect them. These are questions which are beyond the scope of the study to answer, but which may require further consideration at policy, planning and service levels.

KEY POINTS

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 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. As a result people with learning disabilities and/or ASD may find they are locked in their cells for periods to ensure they are protected, they may also 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 reduction in the 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 and/or ASD 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. For staff, however, the significant gap identified was the perceived lack of appropriate community-based facilities for people to move on to 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 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

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