High Cost Residential Placements for Adults with Intellectual Disabilities

Background Concern has been expressed repeatedly about the cost and quality of residential placements for adults with learning disabilities and additional needs. This study sought to identify characteristics of the highest cost placements in the South‐East of England. Method Lead learning disability commissioners in the South‐East of England were asked to provide information about the five highest cost residential placements that they commissioned for adults with learning disabilities. Results The average placement cost of £172k per annum disguised wide variation. Individuals placed were mainly young and male with high rates of challenging behaviour and/or autism spectrum disorder. Most placements were in out‐of‐area residential care. The highest costs were associated with hospital placements and placements for people presenting challenging behaviour. Conclusions Young, male adults with learning disability, challenging behaviour and/or autism continue to receive very high cost residential support, often in out‐of‐area residential care. There remains limited evidence of plans to redirect resources to more local service developments.     

Community‐based Residential Supports for People with Intellectual Disabilities and Challenging Behaviour: The Views of Neighbours

Background The issue of the views of neighbours of community‐based residential supports for people with intellectual disabilities and challenging behaviour has not been examined till date. This study looks at the views of neighbours of two types of community‐based residential supports: non‐congregate settings where the minority of residents have challenging behaviour; and congregate settings where the majority of residents have challenging behaviour. Materials and methods A self‐completion questionnaire was used to collect information on contact between neighbours, residents and staff, and the views of neighbours. Information was also collected by semi‐structured interview with service staff on the characteristics of settings. Results Sixty‐four questionnaires were returned. Contact between neighbours and service users was limited for both types of setting, with two‐thirds of neighbours not knowing any service users by name, and a third having had no active contact with service users. Neighbours of non‐congregate settings were more likely to think that community care was a ‘good policy’ (76%) than neighbours of congregate settings (53%) and to believe that there were benefits to the neighbourhood from having the group home in the area (46% versus 29%) but these differences were not significant. Contact with people with intellectual disabilities was associated with more positive attitudes to community care and specific characteristics of the settings. Conclusions Contact between neighbours and people with severe intellectual disabilities and challenging behaviour is limited. However, the majority of neighbours are positive about community care and the problems reported by neighbours are predominantly minor. The results point to the key role that contact plays in fostering positive attitudes. Findings regarding differences between congregate and non‐congregate settings are limited by the small number of responses from neighbours of congregate settings.     

Psychiatric in‐Patients Away From Home: Accounts by People With Intellectual Disabilities in Specialist Hospitals Outside Their Home Localities

Background This study reflects a growing concern with the placement of people with intellectual disabilities and complex mental health problems in out of area placements at a distance from their families and communities. Materials and methods We interviewed service users (n = 17) living in out of area in‐patient psychiatric units using a semi‐structured interview as part of a service user consultation process. The questions addressed safety and security, food, facilities, day time activities, education, opportunities for socialization, clinical, cultural and religious needs, carer involvement and access to information. Service users were also asked where they would prefer to live if they were to leave the hospital. Results Although there were some positive stories, service user responses suggested limited opportunities for engagement in therapeutic or educational experiences, for building supportive relationships with staff or other residents, for developing religious and cultural identities or for enhancing family relationships. Conclusions Whilst many of the issues raised by participants will be familiar to critics of institutional care, being placed at a distance from home is likely to put an additional strain on relationships with family members and limit opportunities to engage in practices valued by specific ethnic minorities. Commissioners and managers of community intellectual disability services should bear in mind the perspective of service users with complex mental health needs, and take seriously the drawbacks in placing individuals out of area.     

Mainstream In‐Patient Mental Health Care for People with Intellectual Disabilities: Service User,Carer and Provider Experiences

Background Government guidelines promote the use of mainstream mental health services for people with intellectual disabilities whenever possible. However, little is known about the experiences of people with intellectual disabilities who use such services. Materials and Methods Face‐to‐face interviews with service users, carers and community nurses were completed and analysed on a case by case basis using interpretative phenomenological analysis. The results were followed up in focus groups with service providers. Results Positive aspects included the provision of respite, particularly for carers, and good basic care. These were outweighed by a perception of the admission as disempowering and lacking in flexible treatment provision. Accessing help emerged as a major problem, as well as the prospect of staff neglecting the specific needs of people with intellectual disabilities. Conclusions While there were some indications of improvements in line with recent policies and guidance, mainstream services seem a long way off realizing aims of easy accessibility, person‐centred practices and active partnership with intellectual disability services.     

The Impact of Service User Cognitive Level on Carer Attributions for Aggressive Behaviour

Background This study was designed to test the hypothesis that carer attributions for aggressive behaviour vary according to a service user's severity of intellectual disability. Methods Forty‐two residential care staff participated in an investigation examining the effects of the level of a service user's intellectual disability on causal attributions for their aggressive behaviour. Equal numbers of participants were assigned to either a ‘mild disability’ or a ‘severe disability’ condition and required to read a vignette depicting a service user with aggressive challenging behaviour. The service user's cognitive abilities were experimentally manipulated across conditions, whilst the behaviour described remained unchanged. Participants were required to make attributions along Weiner's (1980 ) dimensions of locus, stability and controllability, and in accordance with five prominent models of challenging behaviour ( Hastings 1997b ). Results The service user depicted in the mild disabilities condition was perceived to have significantly greater control over factors causing the aggressive behaviour than the service user in the severe disabilities condition. Participants in the severe disabilities condition considered the aggression to be significantly more challenging. Learned behaviour and emotional causal models of aggressive behaviour were favoured, whilst the physical environment account was seen as least appropriate. Additionally, the biomedical model was rated as significantly more applicable in the severe disability condition than in the mild disability condition. Conclusions Implications for staff and service users are discussed. In particular, the relationship between staff causal attributions for challenging behaviour, their emotional responses and willingness to engage in helping behaviour is explored.     

Transitions: Placing a Son or Daughter with Intellectual Disability and Challenging Behaviour in Alternative Residential Provision

Introduction The timing of moves to alternative care has implications for the effective support of people with intellectual disabilities and their families. Essex et al. (1997 ) proposed three transition profiles: ‘normative’, ‘stress process’ and ‘postponed’. The applicability of these profiles to people with intellectual disabilities and challenging behaviour was tested. Methods Qualitative analysis of interviews with families of 13 males and five females aged between 11 and 35 years, who had left home, was undertaken. Results Few people moved due to ‘normative’ family life cycle changes. The majority left because of family difficulties (‘stress process’). This model was elaborated and three transition routes described: ‘forensic’– involving police contact (actual/potential), ‘family’– reflecting problems in the family and ‘service’– deficits leading to placement out of district. Conclusions This research suggests that people (particularly young men) with intellectual disabilities and challenging behaviour enter statutory care earlier than their counterparts, and people with different levels of intellectual and physical disabilities follow different transition routes.     

Referrals to an Intellectual Disability Psychotherapy Service in an Inner City Catchment Area – A Retrospective Case Notes Study

Background The aims were to identify referral characteristics and outcomes for people with intellectual disabilities referred to a psychodynamic psychotherapy service. Materials and Methods A retrospective case notes review of anonymized data relating to 100 sequential patient episodes. Results A total of 81 people out of 100 with a range of intellectual disabilities from mild to severe were assessed as suitable for therapy; 66 were eligible for individual, art, or group therapy. Common reasons for referral were: trauma/abuse, bereavement, depression and challenging behaviour. Many people had more than one cause for referral and/or co‐morbid psychiatric diagnoses. Indicators of success included: increased daily living skills, improved confidence, self‐esteem and behaviour, and finding employment. Conclusions This study confirms findings from other studies that psychotherapy is possible in people with mild to severe intellectual disability with clinically recorded outcomes ranging from reductions in problem behaviours to getting a job.     

Identity Conflict in People with Intellectual Disabilities: What Role do Service‐providers Play in Mediating Stigma?

Background This study explores the relationship that the people with an intellectual disability have with their ‘learning disabled’ identity and the influence of intellectual disability services on this relationship. Methods Information was collected using three methodologies: (1) audit of referrals to a community psychology service for people with intellectual disabilities; (2) service‐users focus group; (3) survey of the attitudes of intellectual disability service‐providers. Results The results indicate that the conflict about an intellectually disabled identity may be an area of unmet need in services for people with intellectual disabilities. Conclusions There is a need for careful consideration of the ways in which this identity is managed by service‐providers.     

Quality of Life for the Camberwell Cohort

Background Despite the acknowledged difficulties of measuring satisfaction for people with intellectual disabilities, the current study examined the quality of life (QoL) of the Camberwell Cohort, a total population sample of people with severe intellectual disability and/or autism [ Wing & Gould, Epidemiology and Classification, 9 , 1979, 11 ]. Methods The Lifestyle Satisfaction Scale (LSS) [ Harner & Heal, Research in Developmental Disabilities, 14 , 1993a, 221 ] was combined with selected questions from the Quality of Life Questionnaire Schalock & Keith 1993 , Quality of Life Questionnaire, IDS Publishing Corporation, Worthington and conducted with 12 people with intellectual disabilities and 72 proxy respondents. Results Inter‐rater reliability on overall score was available for 10 participants and was acceptable with a Spearman’s Rank order correlation co‐efficient over 0.8. There were no significant differences between the scores of proxies and service users on the domains of the LSS. The sample of service users who completed the interviews was too small to allow further detailed analysis of their responses. However, responses from the proxy interviews indicated that there were no differences in life satisfaction between those socially impaired and socially able. However those with autism were reported to be less satisfied on Community Satisfaction while those with challenging behaviour had lower scores overall and specifically on Community Satisfaction. Those with an IQ below 50 had lower scores overall, than those with an IQ above 50 and specifically on Recreation Satisfaction. Linear regression analysis on total QoL score indicated that only three variables seemed to be important in predicting proxy QoL scores: challenging behaviour at Time 3, IQ at Time 3 and independent living skills at Time 1. Conclusions Despite the difficulties encountered, this study provided some support for the widely help belief that QoL is lower for those with intellectual disability and for those with challenging behaviour.     

End‐of‐Life Care for People with Intellectual Disabilities: Paid Carer Perspectives

Background Little is known of paid carers’ perspectives when caring for people with intellectual disabilities at the end‐of‐life. Materials and methods Sixty four individuals from intellectual disability services took part in 12 focus groups. Interviews were analysed using framework analysis. Results Participants wanted to provide palliative care and felt the experience enriched practice. However, they were inadequately prepared to meet need and this often led to staff stress. A number of issues appeared to heighten stress: situations when end‐of‐life care decision making was challenging, when staff felt ‘pushed out’ by relatives and when staff did not have sufficient support or time to provide care or mourn the loss of service users. Conclusions The study describes issues which contribute to the development of staff stress when providing palliative care and draws attention to areas where strategies should be developed in order to improve the quality of care provided to people with intellectual disabilities.     

Services for People with Mild Intellectual Disabilities and Challenging Behaviour: Service-user Views

Twenty-six people with mild intellectual disabilities and challenging behaviour, who had all been service-users at a specialist, hospital-based unit, were interviewed after they had left the service for an average of four and a half years, about their current quality of life and their memories of the service. On the whole, people were still living in the community though many had had a large number of placement moves (and some had returned to hospital or prison). The service-user's overall quality of life in their current placement was as good as that of the general population in the less restrictive environments but fell increasingly short of this standard as the placements became more restrictive. Even in the best placements people's social relationships appeared impaired when compared to the general population. With respect to their memories of the specialist service, it appeared that, despite the time period, service-users had a clear memory of the service, appreciated many aspects of it (such as the help staff provided, the therapy and education), were divided about some aspects (such as having to be in hospital, being detained under the Mental Health Act 1983, taking medication) and had very strongly negative feelings about aspects of the care which directly restricted their liberty (such as the locking of the front door, the use of restraint and seclusion). It is argued that there may be a need to re-think services for service-users with challenging behaviour and mild intellectual disabilities.     

The Development and Utility of a Program Theory: Lessons from an Evaluation of a Reputed Exemplary Residential Support Service for Adults with Intellectual Disability and Severe Challenging Behaviour in Victoria,Australia

Background Adults with severe challenging behaviour can achieve good ‘quality of life’ outcomes in small supported accommodation services. Yet, the research indicates that they typically experience poorer outcomes than other adults with intellectual disability. This raises questions about the degree to which research has informed program design and implementation. Methodology Data from an evaluation of a residential support service outlines a program theory for supporting people with intellectual disabilities and severe challenging behaviour. Results One aspect of the program theory, the practice framework, which details how support staff should interact with service‐users, is illustrated through documentary, observational and interview data. Conclusions Policy and practice should be informed by the knowledge we have about what works. Describing a program theory demonstrates the utility of developing a program theory for human service organizations and underscores the value of practitioners being familiar with the findings of relevant, good‐quality research.     

Staff‐Averse Challenging Behaviour in Older Adults with Intellectual Disabilities

Background People with intellectual disabilities are increasingly reaching older adulthood. Little is known about age‐related change in the prevalence of challenging behaviours among older adults with intellectual disabilities. Materials and method The frequency and severity of staff‐averse challenging behaviours of 132 older adults with intellectual disabilities was assessed through informant ratings on the Inventory of Client and Agency Planning at two time points 8–10 years apart. Results There was an intraindividual decline in the frequency and severity of challenging behaviour using both lenient and more restricted definitions of challenging behaviour. There was a low prevalence but high comorbidity of severe challenging behaviour. Level of mental retardation and adaptive behaviour were related to the frequency and severity of challenging behaviour. Conclusions An understanding of age‐related intraindividual change in challenging behaviour has implications for staff wellbeing and optimizing the care of older adults with intellectual disabilities.     

Investigating Burnout and Psychological Well‐Being of Staff Working with People with Intellectual Disabilities and Challenging Behaviour: The Role of Personality

Background The present research extended previous research by broadening the dimensions of personality traits, and focusing on burnout and psychological well‐being among staff working with people with intellectual disabilities and challenging behaviour. Methods This is a cross‐sectional survey in which 103 staff completed questionnaires measuring clients’ challenging behaviour according to staff perception, as well as staff burnout, psychological well‐being and personality traits. Results Regression analyses showed that staff perception of challenging behaviour predicted burnout. Controlling for challenging behaviour, three personality traits (neuroticism, extraversion and conscientiousness) predicted burnout and psychological well‐being. Conclusions Personality traits can affect the degree of burnout and poor psychological well‐being that staff may experience. Staff should be informed about the role that their personality traits can play in their well‐being. Training programmes for staff should incorporate the complex relationship between personality traits and well‐being. Further studies should aim at identifying other personality traits that could increase or decrease resilience of staff working in this area.     

Screening for Psychiatric Disorders in a Total Population of Adults with Intellectual Disability and Challenging Behaviour Using the PAS‐ADD Checklist

Background Previous research has suggested a variety of possible relationships between the presence of symptoms of psychiatric disorder and challenging behaviours in people with intellectual disability. This study explores this relationship in a total population sample of adults with challenging behaviour. Materials and Methods Over 800 service settings in a defined geographical area were screened to identify individuals with challenging behaviour. Detailed behavioural data, Psychiatric Assessment Schedule for Adults with a Developmental Disability (PAS‐ADD) checklist and Adaptive Behaviour Scale (Part 1) scores were collected on 76% of the 930 adults identified. Results Just under 17% of participants reached threshold scores on one on more subscales of the PAS‐ADD checklist. There was some evidence of increasing behavioural severity being associated with increasing psychiatric symptoms. There were no associations between specific forms of challenging behaviour and individual symptoms. Conclusions The data would appear supportive of previous suggestions that it is unlikely that the majority of challenging behaviours in adults with intellectual disability are underpinned by psychiatric disorder.     

Assessment of Anger in People With Intellectual Disabilities

This paper examines the link between a self-report Anger Inventory (Benson & Ivins, 1992) and incidents of challenging behaviour by people with intellectual disabilities. Records of challenging behaviour were kept by significant others while the people with intellectual disabilities themselves were asked to complete the Anger Inventory on a number of different occasions. The inventory was used to evaluate and follow up the impact of an anger management group, and in some cases other associated interventions. Data are presented on five individuals for time periods of between two and three years. Visual inspection of the data suggests a degree of correspondence between the levels of challenging behaviour reported by staff and scores reported on the Anger Inventory by participants and this relationship is confirmed statistically. The implications of these results are discussed.     

Out-of-area placements in Scotland and people with learning disabilities: a preliminary population study

People with learning disabilities have a different pattern of disease from the general population and high health needs that are frequently unidentified and unmet. Many require responses from general and specialist health services. A picture is emerging of some people with learning disabilities, often with complex care needs, moving from their home area on what is being termed, out-of-area placements, to receive specialist care. However, within the learning disability population, limited research has been undertaken and the impact on health services is unknown. Data were collected from health and social care providers to identify people with learning disabilities moving in and out of services across Scotland. Further data about the consequences and impact of out-of-area placements were gathered in one geographical area using focus group methodology. The results suggest that people with learning disabilities are moving in, out and across Scotland, often as a result of breakdown of local care arrangements or because of lack of specialist resources. Planning, service development and effective communication need to be in place to address the needs of this increasing and ageing population.     

Service User Outcomes of Staff Training in Positive Behaviour Support Using Person‐Focused Training: A Control Group Study

Background Effectively supporting individuals with intellectual disabilities who display challenging behaviours continues to be a priority for service providers. Person‐focused training (PFT) is a model of service delivery which provides staff with skills in functional assessment and intervention development. Existing longitudinal data from a study of 138 cases suggest that implementation of staff‐developed behaviour support plans through PFT is effective in reducing challenging behaviour in approximately 77% of cases [McClean et al.Journal of Intellectual Disability Research (2005) vol. 49, pp. 340–353]. However, no control group was used in this study. Method The current study involves the use of a control group of individuals with challenging behaviours matched against those selected for PFT over a 6‐month period. Groups were matched on type of challenging behaviour, duration of challenging behaviour, gender and level of disability. Information on the frequency, management difficulty and severity of challenging behaviour was collected pre‐ and post‐training using the Checklist of Challenging Behaviours (CCB) for both groups. Observational data were collected for the target group alone. Rates of psychotropic medication were tracked across the training period. Results Significant reductions in the frequency, management difficulty and severity of challenging behaviour were found for service users in the target group but not in the control group after 6 months. No significant changes were found in the use of psychotropic medication for either group over the 6‐month period. Conclusion Overall results suggest that PFT is an effective model for providing support to individuals with challenging behaviours.