Self‐Harm Among People with Intellectual Disabilities Living in Secure Service Provision: A Qualitative Exploration

Background Research into self‐harm among people with intellectual disabilities has focused predominantly on high frequency internally maladaptive behaviour among people whose disability is severe or profound. Research into different forms of self‐harm, such as cutting or burning the skin, found in those with mild intellectual disabilities; especially those living in secure accommodation, has largely been neglected, although there has been recognition of its impact on individuals and staff working in this field. This study aimed to address this issue through exploration of the experiences and understanding of self‐harm among people with intellectual disabilities living in secure accommodation. A second aim was to explore experiences of interventions associated with this behaviour. Method and Results Semi‐structured interviews were carried out with nine people who self harm, have intellectual disabilities and had been placed in secure accommodation. Interpretative Phenomenological Analysis yielded three master themes. The first related to the interpersonal context of self‐harm and included sub themes relating to past experiences of abuse and loss, and current issues of control and protection. The second master theme related to the emotional experience of self‐harm, which varied throughout the process of self‐harm and was characterized by anger, frustration, hopelessness, relief, guilt and regret. The third master theme related to the management of self‐harm. Participants had experience of helpful individual and collaborative strategies, as well as interventions that were experienced as controlling, unhelpful or ridiculing. Conclusion Emerging themes are considered in relation to the wider‐self‐harm literature and current psychotherapeutic models. A number of limitations to the study are noted and the use of this methodology with people with intellectual disabilities was discussed.     

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.     

Patterns of Risk in Adult Protection Referrals for Sexual Abuse and People with Intellectual Disability

Background Adult protection monitoring data held by local authorities in England provide opportunities to examine referrals for alleged sexual abuse for people with intellectual disability to identify patterns of risk. Methods Adult protection monitoring data collected by two local authorities was analysed, with referrals for alleged sexual abuse compared to referrals for other types of abuse for people with intellectual disability and the wider research evidence. Results Over a fifth of referrals related to alleged sexual abuse, with two‐thirds of these for women. Sexual abuse was confirmed in just over a quarter. Similarities were found with the findings of Brown et al. (Mental Handicap Research, 8 , 1995:3) across a range of key characteristics. Conclusions Adult protection monitoring data can be used to provide risk management information on the sexual abuse of people with intellectual disability. To maximize its potential, detailed case characteristics need to be included and attention given to improving comparability between databases.     

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.     

Individual Characteristics and Service Expenditure on Challenging Behaviour for Adults with Intellectual Disabilities

Background English policy argues that people with intellectual disabilities should be supported in their local communities. There is considerable evidence that this aspiration is not being achieved. This paper seeks to look at the subsection of people with intellectual disabilities who have expensive care needs because of challenging behaviour, to identify the decision‐making processes that have led to current service provision and expenditure and to suggest improvements. Materials and Methods We carried out a survey within five North London boroughs to investigate the characteristics of a cohort of people with intellectual disabilities and challenging behaviour in high‐cost accommodation (over £70 000/annum). Postal questionnaires and face‐to‐face interviews were conducted with stakeholders with intellectual disabilities and patterns of current costs were estimated from existing data provided by the commissioning authorities in the five boroughs. Results Two hundred and five individuals with intellectual disabilities and challenging behaviour were identified. They were accommodated in placements provided by 97 separate providers, both in and out‐of‐area. Those more likely to be placed out‐of‐area were younger, had multiple health problems, significant challenging behaviour and mental health problems including autistic spectrum disorders. The local community intellectual disabilities teams identified a number of difficulties in meeting the needs of those service users. Conclusions Expenditure on all placements for service users with intellectual disabilities is significant. There is a notable lack of investment in local service development. A coherent approach is required, often across service boundaries. The authors suggest a model for targeted investment aimed at supporting effective local services, and reducing the need for and expense of out‐of‐area placements.     

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.     

Representation of People with Intellectual Disabilities in a British Newspaper in 1983 and 2001

Background Media representation of people with intellectual disabilities may contribute to general perceptions held about them and reflect changes in policy and service provision. Materials and Methods Articles from The Guardian newspaper in 2001 were analysed and compared to a previous analysis of material published in 1983. Results There was much more coverage of people with autism or Down syndrome than expected from their actual frequency in the British population of people with intellectual disabilities. Newspaper reports continued to be about children more often than expected when about autism or Down syndrome, but not when about people with other intellectual disabilities. Medically related representations were less than in the past but juxtaposition with other client groups continued. More ‘people‐first’ terminology was now used except in respect of people with autism. Articles systematically under‐represented complexity and severity of need. Conclusions Policy and service changes may have contributed to the decline of medically‐ and child‐related representations within non‐specific intellectual disabilities. The continued over‐representation of children in articles about autism and Down syndrome, and the generally increased reference to people with those syndromes, suggests growing differentiation within the population of people with intellectual disabilities. The focus on people with less severe or complex disabilities echoes criticisms of Valuing People.     

Sexual Offending Theories and Offenders with Intellectual Disabilities

Background There have been limited theoretical developments with respect to sexual offending by people with intellectual disabilities [ Lindsay (2005) Mental Retardation, Vol. 43, pp. 428–441 ], especially when compared with the development of theories for mainstream sexual offenders. This paper aims at examining a range of theories in their application to sexual offenders with an intellectual disability. Method and Results Three levels of theory are discussed. These include multifactor theories, discussed in the light of a recent model proposed by Lindsay for sexual offenders with intellectual disabilities, as well as single‐factor theories associated with socio‐affective functioning and an offence process theory, the self‐regulation model of relapse prevention. Finally, a recent theoretical development called the ‘integrated theory of sexual offending’ (ITSO) is discussed and applied to sexual offenders with intellectual disabilities. This theory combines theories from all three levels in an effort to provide a comprehensive explanation of the aetiology and maintenance of sexual offending. Conclusion Theories at all three levels, as well as the ITSO, appear to have relevance to sexual offenders with intellectual disabilities. Some tentative suggestions are made for future research to assist in the application of theory to this client group. It is argued that a more complete understanding of theory in relation to this client group will lead to the development of more effective intervention programmes.     

Investigating Sexual Abuse: Findings of a 15‐Year Longitudinal Study

Background There is a lack of longitudinal large‐scale studies of sexual abuse in intellectual disability services. Such studies offer opportunities to examine patterns in disclosure, investigation and outcomes, and to report on incidence and trends. Methods All allegations of sexual abuse (n = 250) involving service users as victims or perpetrators of sexual abuse over a 15‐year period in a large Irish community‐based service were analysed based on the data extracted from extensive contemporaneous case notes. Results Victims or families were the most common concern raisers of abuse. Following multidisciplinary investigation, almost half (47%) of all allegations of sexual abuse were confirmed (n = 118). In confirmed episodes, more than half the perpetrators were adolescents and adults with intellectual disabilities, while almost a quarter were relatives. The most common type of abuse was sexual touch, although 31% of episodes involved penetration or attempted penetration. The most common location was the family home, followed by the day service and public places. A notable feature was the variation in the incidence of abuse over the study period, largely caused by episodes of multiple abuse. Conclusions The incidence of confirmed episodes of sexual abuse of adults with intellectual disabilities may be higher than previously estimated. There is an urgent need for statutory guidelines, which require reporting of adult abuse, and provide protection for bona fide whistle blowers, similar to existing child protection legislation.     

‘Diagnostic Overshadowing’ Amongst Clinicians Working with People with Intellectual Disabilities in the UK

Background Mental health problems are known to be hard to recognize in people with intellectual disabilities. One factor that may contribute to this is the diagnostic overshadowing bias, which describes the tendency of the clinicians to overlook symptoms of mental health problems in this client group and attribute them to being part of ‘having an intellectual disability’. Although a small amount of research has investigated this in the USA, very little has taken place in the UK. Materials and methods Two clinical vignettes were produced. Both described identical clinical problems, except that one vignette described a man with an IQ of 58 and impaired social functioning (i.e. an intellectual disability) and one a man with an IQ of 108 and normal social functioning (i.e. non‐intellectually impaired). Psychiatrists (n = 274) and clinical psychologists (n = 412) throughout UK were randomly assigned to either the low IQ or normal IQ condition, and sent a corresponding clinical vignette. Results One hundred and thirty‐three psychologists and 90 psychiatrists responded. Diagnostic overshadowing did appear to be present. Clinicians were more likely to recognize a range of symptoms in those with IQs in the normal range than those with intellectual disabilities. Furthermore, psychiatrists appeared more likely to make this error under some circumstances than clinical psychologists. Conclusions Diagnostic overshadowing may contribute to the difficulties that mental health professionals commonly experience in identifying mental health problems in people with intellectual disabilities. However, the methodology commonly used in this type of research has a number of weaknesses, and would benefit from an alternative approach.     

The Prevalence of Psychiatric Disorders among People with Intellectual Disabilities: An Analysis of the Literature

Background It has often been stated that the prevalence of psychiatric disorders in people with intellectual disabilities is greater than it is in the population as a whole. Method The epidemiological studies on psychiatric disorders in people with intellectual disabilities were reviewed. Results There is evidence that the prevalence of psychiatric disorder is greater in children with intellectual disabilities, compared with children with normal IQs, that it is higher in both adults and children with severe intellectual disabilities compared with people with mild or no intellectual disability and that the rate of problematic behaviour is higher in both adults and children having intellectual disabilities, than in their non‐disabled peers. Conclusions There is no sound evidence that the prevalence of psychiatric disorders in adults with mild intellectual disability is greater than in the population as a whole.     

Profiling the Sexually Abusive Behaviour of Men with Intellectual Disabilities

Of a total of 120 men with intellectual disabilities who were referred for sex education, 75 had allegedly perpetrated some form of sexual abuse. Presented here is a statistical analysis of the offences that these men committed and the responses they received. The most common victims are shown to be people with intellectual disabilities, women staff, children and women in the general public. Variation is found between the nature of the offences across victim groups, with people with intellectual disabilities being on the receiving end of the most serious forms of assault Seriousness of the assaults was also found to be dependent on the ability of the perpetrator. The responses to the men were not found to be correlated with the nature of the sexual abuse but to whom was abused: the abuse of children and women in the general public giving rise to the strongest responses. Protection of victims from subsequent abuse was also related to this specific variable: here people with intellectual disabilities and women staff gained the least protection. Attempts to isolate predictive factors of abusive behaviour proved unsuccessful. For example, abusers and non-abusers within the sample had experienced sexual abuse themselves at similar rates. The study draws attention to the high proportion of men receiving intellectual disability services who appear not to have intellectual disabilities and the poor level of risk management of men with histories of sexually abusing.     

Residential Provision for Adult Persons with Intellectual Disabilities in Ireland

Background The type of accommodation provided for persons with an intellectual disability is a major indicator of the social policy for this client group. This is likely to vary within and across countries; hence the importance of undertaking national and international comparisons. Estimations of future need are also required to assist service planning. Method A database of all persons in receipt of intellectual disability services has been operating in the Republic of Ireland since 1995. In Northern Ireland, regional databases were used to provide similar information. Results Around 10 000 people live in some form of residential provision: 56% in special settings, 35% in ordinary housing and 9% in hospitals. Most residents were classed as having ‘severe’ disabilities and were aged over 35 years. There were marked differences in the amount and type of provision provided in the two parts of the island. This was also mirrored in differences across health service areas within each country. The demand for future places was greater in Northern Ireland. Conclusions A planning target of 3.5 places per 1000 adult population is proposed although substantial investments in services is required to achieve this. Longitudinal surveys are an important way of monitoring the impact of new policy initiatives.     

Sodium‐Valproate‐Induced Pancreatitis in a Man with Profound Intellectual Disability: the Significance of Diagnostic Difficulties

Pancreatitis is a common but under‐reported complication of treatment with sodium valproate, a drug frequently prescribed for people with intellectual disabilities. The present authors report a case of valproate‐induced pancreatitis in a man with profound intellectual disability and review the relevant literature. The wider implications of problems experienced with diagnosis are discussed, emphasizing difficulties in recognizing pain and physical illness in this client group.     

Mortality and Life Expectancy in Dutch Residential Centres for Individuals with Intellectual Disability, 1991–1995

Background Several studies showed that the individuals with intellectual disability have a shorter life expectancy than their intellectually average peers. To gain insight in the present life expectancy of people with intellectual disability, a study with recent data was performed. Methods We used data of the National Case Register (LRZ) with data of almost all residents of residential centres in the Netherlands for the period 1991–1995 (N = 29 290). Approximately 40% of all people with intellectual disability in the Netherlands reside in such centres. Results Results showed that 5‐year‐old people with intellectual disability in Dutch residential centres have a life expectancy of 41 years. The life expectancy of their peers with Down's syndrome in the centres is 46. At the age of 30 years, the respective figures are 36 and 26 years. No statistically significant differences in mortality were found between women and men and between levels of intellectual disability. Conclusions Due to prolonged longevity, the client population in residential centres will continue to age and thus the numbers of older individuals will increase. This ageing process has implications for the care for elderly individuals, because they need other care than before due to physical, psychological and social changes and spiritual challenges.     

People with Intellectual Disabilities Living in Generic Residential Services for Older People in the UK

Background As part of a UK programme of work focusing on older people with intellectual disabilities, the circumstance of those who reside in generic services for older people were investigated. Materials and methods Questionnaires were sent to 2570 residential and nursing homes in 53 local authorities across the UK. Results Five hundred and thirty returned questionnaires identified 215 people with intellectual disabilities currently living in 150 homes. They were significantly younger than the other residents, and were placed in these homes more often because of organizational change or the ageing/death of a family carer, rather than any changes in their own needs. Several potential indicators of a low quality of life were identified, including limited opportunities to get out, to access day services, to have contact with family or friends and to receive input from professionals outside the home. Conclusions Attention needs to be given both to people with intellectual disabilities already residing in older people's services and to the prevention of further inappropriate placements.     

Individual and Service Factors Affecting Deinstitutionalization and Community Use of People with Intellectual Disabilities

Background The aim was to evaluate the effect of the closure of a small intellectual disability hospital on the community use of those people involved. In addition, the study sought to identify those factors that might influence the community use of people with intellectual disabilities. Methods The impact of resettlement was investigated using a mixed design in which changes in the dependent variable (The Guernsey Community Participation and Leisure Assessment, GCPLA scores) were measured within‐subjects (before and after leaving hospital) and between‐subjects (using a comparison group of people who lived in the community throughout the study). In addition, a standard multiple regression design was employed to explore the relative contribution of client and service variables to GCPLA scores. Results Resettlement from hospital corresponded with significant increase in the range and frequency of leisure and community contacts, although community use remained low in comparison with the general population and in relation to other people with intellectual disabilities. Community and leisure use was found to be related to the place of residence, adaptive behaviour and the robustness of community goals within the service user's individual plan.     

Overcoming ignorance and stigma relating to intellectual disability in healthcare: a potential solution

while a.e . & clark l.l. (2009) Journal of Nursing Management  18, 166–172
Overcoming ignorance and stigma relating to intellectual disability in healthcare: a potential solution Aim To propose a strategy for overcoming stigma and discrimination against people with intellectual disabilities within healthcare. Background Evidence of poor healthcare for those with intellectual disabilities resulted in an independent inquiry. The subsequent report has charged healthcare organizations to address current organizational failings. Evaluation The origins of discriminatory practices in health services and the evidence of persisting poor care and stigmatization of this patient group despite UK Government policy are set out. Key issue The stigmatization and resulting discrimination of people with intellectual disabilities persists. Conclusion In addition to investment in core training, organizational change is needed to bring about change and a reduction in health inequality. Implications for nursing management The development of a new framework for nursing is recommended with leadership at all levels of healthcare so that people with intellectual disabilities and their families can expect to receive high quality care in all healthcare settings.     

The Validity of a Personality Disorder Diagnosis for People with an Intellectual Disability

Background It has long been appreciated that people with intellectual disabilities experience mental health problems. Studies into the prevalence of personality disorder in the population of people with an intellectual disability indicate significant variations, which have no clear explanation. Method Work on personality disorder and personality is reviewed. Results This article will outline some of the reasons for the variations in the reported prevalence figures including the impact of diagnostic overshadowing, problems inherent within the diagnostic classification systems and instruments that have a significant impact upon the reliability of a diagnosis. It will also argue that there are some fundamental issues relating to the validity of the construct of personality disorder and its application to the population of people with intellectual disabilities. The article notes that the model of personality, which in itself is not without critics, is derived from research on the general population and has not been integrated with personality research conducted within the population of people with an intellectual disability. Conclusion It is suggested that the current diagnostic systems need to be reviewed in the context of an existing evidence base from within the field of intellectual disabilities. There are grounds to be cautious with the current diagnostic process and to question its clinical utility. Furthermore, diagnosis may only serve as an intermediate step and as part of a more detailed nomothetic approach.