Showing papers in "Journal of Applied Research in Intellectual Disabilities in 2004"

Social and Professional Support for Parents of Adolescents with Severe Intellectual Disabilities.

Abstract: Background: Previous research has identified various dimensions of social support that are positively associated with parental well-being. However, most research does not include multiple measures of social support and uses heterogeneous samples in terms of child characteristics such as age and severity of intellectual disability. Methods: Thirty-three parents of adolescent children with moderate–profound intellectual disabilities completed measures of parental well-being (stress, anxiety and depression, and caregiving satisfaction), social support (informal and formal sources, and practical and emotional support), and child characteristics (adaptive and problem behaviours). Results: Correlation analyses showed that parental well-being was associated with the child's adaptive and problem behaviours and with the child's autism diagnosis. Parents’ ratings of the helpfulness of informal sources of support (spouse, extended family, friends, etc.) was most reliably associated with parental well-being, and remained so after controlling for child characteristics. Parents’ access of service and professional support was not associated with parental well-being, but there was some evidence that it was related to their child's needs. Conclusions: The research emphasizes the significance of including multiple measures of social support in research with families of children with an intellectual disability. Furthermore, the possibility that parents, during their child's adolescence, may be especially vulnerable to the disruption of their informal support networks is an important practical consideration.

"Diagnostic Overshadowing" amongst Clinicians Working with People with Intellectual Disabilities in the UK.

Abstract: 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.

Person‐Centred Planning or Person‐Centred Action? Policy and Practice in Intellectual Disability Services

Abstract: Background This critical review considers the nature and importance of person-centred planning in the context of current British policy and service development in intellectual disability The difference between person-centred planning and other kinds of individual planning is discussed Materials and method The scale of the task of implementing person-centred planning as a national policy initiative is considered The limited evidence base for person-centred planning is reviewed and the reasons for the failure of previous attempts at individual planning are analysed The assumption that person-centred services will be produced by a new kind of individual planning is questioned Conclusions Consideration is given to what would be necessary to make services more person-centred, including changes in power relations, funding arrangements and staff training and supervision

Friendship Activities of Adults with Intellectual Disabilities in Supported Accommodation in Northern England

Abstract: Background Despite there being considerable evidence to suggest that friendships are central to health and well-being, relatively little attention had been paid to the friendships of people with intellectual disabilities. Methods Friendship activities involving people with and without intellectual disabilities were measured over the preceding month in a sample of 1542 adults with intellectual disabilities receiving supported accommodation in nine geographical localities in Northern England. Results The results of the study indicate: (1) low levels of friendship activities among people with intellectual disabilities in supported accommodation; (2) people with intellectual disabilities are more likely to be involved in activities with friends who also have intel lectual disabilities than with friends who do not have intellectual disabilities; (3) most friendship activities take place in the public domain rather than in more private settings (e.g. at home); (4) the setting in which a person lives is a more significant determinant of the form and content of activities with their friends than the characteristics of participants. Conclusions Further attention needs to be given to research and practice initiatives aimed at increasing the levels of friendship activities of people with intellectual disabilities.

Social Competence in Persons with Prader‐Willi, Williams and Down's Syndromes

Abstract: Background This study explores everyday social competence in the lives of persons with three genetic intellectual disability syndromes. Methods Using parent reports on the Social and Activity Competence domains of Achenbach's Child Behavior Checklist (CBCL), socially competent behaviours were examined in 58 persons with Williams syndrome, 54 persons with Prader-Willi syndrome, and 65 persons with Down's syndrome. Results The Down's syndrome group showed the highest overall social competence scores, while individuals with Prader-Willi syndrome fared worst in terms of their behaviour with others. The Williams syndrome group scored lowest in terms of skill with jobs and chores, and the Down's syndrome group showed the least skill in non-sport activities. Regarding specific activities, musical activities were popular in both Williams syndrome and Down's syndrome, but more participants with Williams syndrome played musical instruments. Compared with the other groups, individuals with Prader-Willi syndrome were five to 25 times more likely to play with jigsaw puzzles, and those with Williams syndrome were least likely to engage in any visual–spatial leisure activities. Age was found to be a positive correlate of social competence for the Williams and Down's syndrome groups, but not for the Prader-Willi group. Conclusions Implications are discussed for interventions and for future behavioural phenotype work.

The relationship between life events and psychopathology amongst children with intellectual disabilities

Abstract: Background Research has established a clear relationship between life events and psychopathology amongst children generally, but this relationship has not been investigated in children with intellectual disabilities. Methods A secondary analysis of data collected by the 1999 ONS survey of the Mental Health of Children and Adolescents in Great Britain, investigating associations between adverse life events and psychopathology amongst 264 children with intellectual disabilities and 10 040 children without intellectual disabilities. Results Children with intellectual disabilities were more likely to experience a greater number and range of adverse life events than children without intellectual disabilities, a difference partly accounted for by family poverty. For children with and without intellectual disabilities, there were robust associations between several life events and child psychiatric disorders, most strongly emotional disorder. There also appeared to be a cumulative effect of life events on the psychopathology of children with intellectual disabilities. Conclusions Adverse life events play an important role in the psychopathology of children with intellectual disabilities and require further research attention. Policy interventions to reduce family poverty may have an indirect effect upon child psychopathology.

Assessment of Risk Manageability of Intellectually Disabled Sex Offenders

Abstract: Background There are no validated risk assessment tools for intellectually disabled (ID) sex offenders, with the exception of the work of Lindsay et al. [Journal of Applied Research in Intellectual Disabilities (2004) 17: 267] regarding the prediction of risk for aggressive behaviour of ID offenders in residential settings. ID sex offenders comprise a neglected subgroup, and one that poses unique challenges and rewards for clinicians. Methods and purpose Recent work by Tough [Tough S. (2001)Validation of Two Standard Assessments (RRASOR, 1997; STATIC-99, 1999) on a Sample of Adult Males who are Intellectually Disabled with Significant Cognitive Deficits. Master's Thesis, University of Toronto, Toronto, ON, Canada] examined the utility of the Rapid Risk Assessment for Sexual Offence Recidivism [RRASOR; Hanson R. (1997)The Development of a Brief Actuarial Risk Scale for Sexual Offence Recidivism, User Report 97-04. Department of the Solicitor General of Canada, Ottawa, ON, Canada.] and the Static-99 [Hanson R. K. & Thornton D. (1999) Static-99: Improving Actuarial Risk Assessments for Sex Offenders, User Report 99-02. Department of the Solicitor General of Canada, Ottawa, ON, Canada] for ID sex offenders. She determined that the Static-99 may overestimate risk in ID sex offenders and that the RRASOR seemed to be a more accurate tool for these offenders. These actuarial tools provide a ‘risk baseline’, which helps in determining treatment intensity and level of supervision, but do not provide much help in designing treatment plans or management strategies based on the needs of the individual client. Hence, all three authors have developed risk management strategies in their work with ID sex offenders based largely on dynamic factors. This work has produced the present assessment. Outcome The present paper outlines a convergent approach which uses the information provided by static actuarial instruments and relevant dynamic factors as an introduction to the formation of a risk management strategies instrument for ID sex offenders. Thirty suggested items, split into four categories (chronic dynamic and acute dynamic for staff and environment; chronic dynamic and acute dynamic for offenders) are listed along with brief explanations of these items.

Negative Emotional Reactions to Challenging Behaviour and Staff Burnout: Two Replication Studies

Abstract: Background: Hastings, R. P. [American Journal on Mental Retardation (2002) Vol. 107, pp. 455–467] hypothesized that staff negative emotional reactions to challenging behaviour might accumulate over time to affect staff well-being. Only one previous study (Mitchell, G.& Hastings, R. P. [American Journal on Mental Retardation (2001) Vol. 106, pp. 448–459] has explored this relationship. The present analyses were designed to replicate these findings. Methods: Data were analysed from two samples of staff. In study 1, 101 staff rated their typical emotional reactions to challenging behaviours experienced as a part of their work and completed the Maslach Burnout Inventory (MBI). In study 2, 99 staff rated their negative emotional reactions to written challenging behaviour vignettes and also completed the MBI. Results: In both studies, significant positive correlations were found between negative emotional reactions to challenging behaviour and emotional exhaustion and depersonalization burnout but no association was found with personal accomplishment scores. Conclusions: These findings replicate previous results, but cannot be used to support the putative causal relationship between emotional reactions to challenging behaviour and staff well-being. Clinical implications of a focus on staff emotional reactions to challenging behaviour are discussed.

Predictors of Sexual Offence Recidivism in Offenders with Intellectual Disabilities.

Abstract: Background The extensive research on prediction of risk in offenders has developed a number of reliable static risk predictors. There is also a developing body of work on proximal, dynamic risk factors and their importance in predicting violent and sexual offending. Although this work has not been done specifically on offenders with intellectual disabilities, there is some preliminary evidence that it is equally relevant in this field. The current study extends this work. Method Fifty-two sexual offenders and abusers were included as participants and 18 of them had re-offended or were strongly suspected of having re-offended. A checklist of static and dynamic factors were derived from the literature and clinical experience and a retrospective, correlational method was employed. Two respondents provided information on the presence or absence of each variable and this information was checked through extensive case records. These variables were correlated with re-offending and suspicion of re-offending. Results Several variables correlated significantly with the two dependent variables and a standard multiple regression investigated the predictive quality of each independent variable. Significant variables were allowances made by staff, antisocial attitude, poor relationship with mother, denial of crime, sexual abuse in childhood, erratic attendance and poor response to treatment. Certain variables, found significant in earlier studies, did not emerge in the current analysis. These predictors accounted for around 53% of the variance for evidence of re-offending and around 74% of the variance for suspicion of re-offending. Conclusions The variables which emerge are similar to those found in the mainstream offender literature. Some hypotheses are presented on why certain variables did not emerge. Like other similar studies, the results should be treated with caution because of retrospective bias.

A Follow‐up of Deinstitutionalized Men with Intellectual Disabilities and Histories of Antisocial Behaviour

Abstract: Background There is frequently great concern about the dangerousness of deinstitutionalized men with intellectual disabilities who have been institutionalized because they are considered to be at high risk for the commission of serious antisocial acts or sexual offending. Unfortunately, there is little information on whether changes in the behaviour of these men can be used to adjust supervision so as to manage risk. Methods An appraisal of men with intellectual disabilities and histories of serious antisocial behaviours who were residing in institutions about to be closed led to a 16 month follow-up of 58 of these clients who had been transferred to community settings. Results A total of 67% exhibited antisocial behaviour of some kind and 47% exhibited ‘hands-on’ violent or sexual misbehaviours directed toward other clients or staff. The Violent Risk Appraisal Guide was the best predictor of new violent or sexual incidents and a variety of other pre-release predictors were related to the likelihood of antisocial incidents of any kind. Overall predictive accuracy was moderate. A field trial showed that monthly staff ratings of client characteristics were related to antisocial incidents. Conclusions These preliminary data indicate that measures of dynamic risk involving staff ratings are worth developing and evaluating.

Job Stress, Burnout and Job Satisfaction: An Intervention Study for Staff Working with People with Intellectual Disabilities

Abstract: Background The present paper reviews staff stress, burnout and job satisfaction Methods A longitudinal, quasi experimental study was carried out among staff working with people with intellectual disabilities in two municipalities in Norway The purpose was to measure mean differences of stress, burnout and job satisfaction after different intervention approaches were applied to staff in one of the municipalities Staff in the other municipality acted as a control group Results Using the pretest score as the covariate, by analysis of covariance (ancova), the experimental group showed a significant (P < 005) reduction in stress and exhaustion, and a strong significant rise in job satisfaction after intervention Conclusions This was a sufficiently promising result to encourage further research, not only to promote the individual worker's health and well being, but also to ensure the health and well being of those for whom services are provided

Risk Assessment: Actuarial Prediction and Clinical Judgement of Offending Incidents and Behaviour for Intellectual Disability Services

Abstract: Background Research on prediction of violent and sexual offending behaviour has developed considerably in the mainstream criminological literature. Apart from one publication [Quinsey (2004)Offenfers with Developmental Disabilities, pp. 131–142] this has not been extended to the field of intellectual disabilities. Methods Work on actuarial instruments, dynamic variables, clinical judgement and structured clinical judgement is reviewed. Results A number of studies comparing actuarial instruments in terms of their predictive validity are reviewed. Relative effectiveness and applicability to intellectual disability is considered. A framework for dynamic variables is outlined and the importance of dynamic variables for inclusion in risk prediction is established. Strengths and limitations of clinical judgement are reported and the importance of reliability is noted. Finally, structured clinical judgement is reviewed in terms of the way in which it combines the other three groups of variables. Conclusions The information regarding different methods of risk assessment is integrated with research and opinion contained in the Special Issue. Risk prediction will always be a judgement and as such there will always be errors in judgement. As clinicians, researchers and policy makers it is our duty to employ the latest research information to make predictions that are as accurate as possible. However, we must also help to promote a culture that can be tolerant of inevitable errors.

Levels of Psychological Distress Experienced by Family Carers of Children and Adolescents with Intellectual Disabilities in an Urban Conurbation

Abstract: Background The aim of the present study was to identify factors associated with the level of psychological distress reported by family carers of children with intellectual disability living in a large urban conurbation. Method Information was collected by postal questionnaire (or interview for family carers who did not have English as their first language) from the family carers of 408 children with intellectual disability (31% of all children within the area administratively identified as having an intellectual disability). Results Results indicated that 47% of primary carers scored above the threshold for psychological distress on the GHQ and that scoring above the threshold was strongly related to the emotional and behavioural needs of the index child and South-Asian ethnicity and moderately associated with the severity of the child's delay in communication. Conclusions The rates of psychological distress (47% overall, 70% among South-Asian carers) were markedly higher than that found in previous studies of carers supporting a child with intellectual disabilities. It is suggested that these elevated rates of psychological distress may be mediated by socio-economic deprivation.

Supported Employment: a Route to Social Networks

Abstract: Background: Evidence suggests that social networks mediate social functioning, self-esteem, mental health and quality of life. This paper presents findings concerning changes in the social lives, skills, behaviour and life experiences of a group of people with intellectual disabilities (n = 18), who gained support from an employment agency to find paid work. Method: The composition and quality of individuals' social networks were mapped using a Social Network Guide. Changes in skills, behaviour and life experiences were assessed using standardized measures. Results: The social network size of participants increased over time, with most social contacts being drawn from community contexts. This linked to improvements in life experiences, particularly in relation to leisure activities. Some improvements in adaptive behaviour were also found over time but no significant relationship between social network size and changes in adaptive behaviour were evident. Conclusions: Whilst work will not guarantee social relationships, it can help maintain network size and provides a good opportunity for people with intellectual disabilities to meet others who are not associated with intellectual disability services.

Implementation and evaluation of active support

Abstract: Objectives Active support was implemented in three community houses (active support houses), with 11 service users with severe learning disabilities. Methods This was evaluated with reference to changes in levels of engagement, challenging behaviour (major and minor) and staff contact, measured against three comparison services (non-active support houses). Results All measures increased for the active support houses. Significant increases in activity levels were found in one house. Statistically significant increases in activity and minor challenging behaviour were also found when all active support houses were compared with all non-active support houses. In the non-active support houses, all measures decreased, with the exception of mean level of staff contact in one house. Conclusions Unlike previous research findings, those service users who were less able did not receive comparatively more support from staff post-training and changes appeared unrelated to staff contact.

Clinical and Actuarial Prediction of Physical Violence in a Forensic Intellectual Disability Hospital: A Longitudinal Study

Abstract: Background: There is a high rate of physical violence in populations with intellectual disabilities, and this has been linked to problems for the victim, the assailant, members of staff and services. Despite the clinical significance of this behaviour, few studies have assessed methods of predicting its occurrence. The present study examined clinical and actuarial methods of predicting violence in a forensic intellectual disability hospital. Methods: The sample for the study consisted of people resident in the hospital during a 1-year period (n = 124). Clinical prediction used a risk rating made by members of the person's clinical team, whereas actuarial prediction used the number of violent incidents in the 6-months before the date of the clinical risk assessment. Computerized hospital records of violence in the 6 months after the assessment were used to examine the predictive accuracy of the two methods. Results: The clinical method produced an area under the curve of 0.74 (95% CI: 0.65–0.83) in a receiver–operating characteristic curve analysis. The value for the actuarial method was 0.77 (95% CI: 0.69–0.86). Both methods performed at levels significantly above chance, but no one method was found to be superior to the other. Conclusions: These findings suggest that it is possible to predict who is at risk of violence in forensic populations with intellectual disabilities. Here, the authors discuss the clinical implications of these findings and the clinical application of risk prediction within clinical services.

The Dynamic Risk Assessment and Management System: An Assessment of Immediate Risk of Violence for Individuals with Offending and Challenging Behaviour

Abstract: Purpose Research on dynamic risk assessment has developed over the last 10 years and a number of variables have emerged as being possible predictors of future sexual and violent offences. These variables include hostile attitude/anger and compliance with routine. In 2002, Thornton (Sexual Abuse: A Journal of Research & Treatment14, 139) developed a framework for dynamic risk assessment which also includes distorted and dysfunctional attitudes, socio-affective functioning, self-management and, for sex offenders, sexual interests. In 2000, Hanson & Harris (Criminal Justice & Behaviour27, 6) provided empirical support for the predictive power of a number of dynamic factors which they split into stable and acute variables. In their research they found poor social supports, antisocial lifestyle, and poor self-management strategies to be important in addition to co-operation with supervision and hostile attitude. The present report describes the development of the Dynamic Risk Assessment and Management System (DRAMS) – an assessment for dynamic/proximal risk factors in people with intellectual disabilities. Method In a field trial, the DRAMS was administered by staff unfamiliar with the formal requirements of the assessment. They were familiar with other ward-based assessments. Ten subjects were assessed for reliability purposes (total of 45 assessments) and five subjects were assessed consistently over a 3-month period. Eighteen aggressive incidents were recorded in these five subjects and the relationship between DRAMS assessments and the incidents was calculated. Assessments were recorded on the day of the incident, the day before the incident and on a control day, which was at least 7 days before or after an incident. Results Four items achieved high reliability – mood, psychotic symptoms, self-regulation, compliance with routine – in addition to total score. Two items achieved intermediate reliability – antisocial behaviour and problems with thinking/attitudes, and three items were not applicable to this client group in that none of the participants was ever rated on them – substance abuse, renewal of emotional relationships and victim access. One item had poor reliability – therapeutic alliance. There were significant differences between the DRAMS assessment on the control day and assessments both on the day prior to the incident and the day of the incident for three of the six subscales and total score. Conclusion Initial results would suggest that the DRAMS is a reliable instrument apart from the therapeutic alliance category. Initial signs suggest that it may be predictive of aggressive incidents in residential settings. Several developments to other settings and the client groups are discussed.

Should Actuarial Risk Assessments be Used with Sex Offenders who are Intellectually Disabled

Abstract: Background Objective actuarial assessments are criticalfor making risk decisions, determining the necessarylevel of supervision and intensity of treatment (Andrews& Bonta 2003) This paper reviews the history of orga-nized risk assessment and discusses some issues in cur-rent attitudes towards sexual offenders with intellectualdisabilitiesMethod We present two risk assessment tools (RRASORand STABLE-2000) that appear to have practical utilitywith this population Data are presented from a commu-nity sample of 81 sexual offenders who are intellectuallydisabled suggesting that the RRASOR may provide auseful metric of risk for this population Dynamic risk isassessed using the STABLE-2000 This tool, based on 16areas empirically associated with sexual recidivism,samples the individuals’ current behaviour, skill deficitsand personality factors Change in these factors servesto flag the supervisor to changing risk levelsConclusions In addressing the question of whether weshould seek special risk measures normed on peoplewith intellectually disabilities, given the current lack ofalternative tools, we conclude that it is reasonable tomake use of the risk assessments that have been valid-ated on the general sex offender populationKeywords: developmental, intellectual disability, risk,sex(ual) offendersThe treatment of people with intellectual disabilities inconflict with the law is different from the way in which‘normal’ offenders are treated (Hingsburger et al inpress) Assessment of risk to reoffend is one of the mostobvious and controversial differences Non-intellectuallydisabled offenders are routinely assessed with a widerange of actuarial risk assessment tools (see Appendix)Based upon measurable factors in the offender’s past,these risk assessment tools have now reached a level ofaccuracy where they should be used as a matter ofcourse (Barbaree et al 2001; Sjo¨stedt & La˚ngstro¨m 2001;Doren 2002) Routine use of these tools allows us todetermine the level of risk each offender presents andapply treatment and supervision resources accordingly(Andrews & Bonta 2003)But are these tools appropriate for use with sex offen-ders who are intellectually disabled? The application ofthese tools should occur only if there is reasonable expec-tation of benefit to this population Some commentatorshave understandable fears that the use of actuarial mea-sures will only increase the stigmatization of this popula-tion On the other hand, we must consider if the livesand liberty of intellectually disabled sexual offenders arebeing unjustly restricted because some practitioners arereluctant to adopt formalized risk assessment

Changing Selves: a Grounded Theory Account of Belonging to a Self-advocacy Group for People with Intellectual Disabilities1

Abstract: Purpose To explore the experience of belonging to a self-advocacy group for people with intellectual disabilities, and how membership of such a group impacts on individual members. Methods Eight people with intellectual disabilities, who belonged to a self-advocacy group for at least 6 months, were interviewed about their experiences of membership. A grounded theory approach was used to generate and analyse the interview data. Results A model of the impact of belonging to a self-advocacy group for people with intellectual disabilities on individual members' self-concept is developed. The model proposes that participants' self-concept changes as a result of group membership and that this process of change involves six key categories: joining the group; learning about and doing self-advocacy; becoming aware of group aims and identity; experiencing a positive social environment; identifying positive change in self-concept and seeing the future of self and group as interlinked. Conclusion Membership of a self-advocacy group for people with intellectual disabilities changes the self-concept of participants. The processes surrounding these changes have important implications for self-advocacy groups both, in recruitment and in supporting group members.

Religious Expression amongst Adults with Intellectual Disabilities

Abstract: Background Although religion is an important part of many people's lives, little is known about the role of religion in the lives of people with intellectual disabilities. Method Semi-structured face-to-face interviews were conducted with 29 people with intellectual disabilities of a range of faiths (various Christian denominations, Islam and Hindu dharma). Participants were asked about the meaning of religion for them, the role of religion in their lives and the attitudes of others towards religious expression. All interviews were audio-recorded, transcribed and thematically analysed. Results Participants expressed strong religious identities. Prayer was a particularly popular form of religious expression, with other forms of religious expression often hindered by services or faith agencies. Some individuals expressed how their religious faith was not recognized by services or faith agencies. Conclusions Services and faith agencies need to recognize the importance of religion in the lives of many people with intellectual disabilities, and support religious expression in this group.

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

Abstract: 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.

Using Q-Methodology to Involve People with Intellectual Disability in Evaluating Person-Centred Planning

Abstract: Objectives Person-centred approaches do not easily lend themselves to standard methods of evaluation. This study develops a technique that will involve service users and their circle of support in making individual plans. Methodology Q-methodology is a phenomenological approach, which enables the researcher to co-construct the stories of many people. Two people with learning disabilities and seven members of their circle of support were identified to participate in the study. They attended a stakeholder meeting to identify 36 valued activities. The 16 participants then completed a Q-sort using photographs to represent these activities. These sorts were then interpreted using Q-methodology. Results There were a number of intercorrelations between the card sorts. Principle component analysis showed that two factors accounted for 73% of the variance of the data. The two clusters represented the members of each person's circle of support. Analysis and comparison of the factors have highlighted the similarities and differences between individuals and their circle of support. Conclusions This study shows that Q-methodology is a useful adjunct to person-centred planning. Looking at and interpreting the data, which emerge through Q-methodology, hashighlighted both similarities and individual differences for goal planning. It has also highlighted potential areas for service change and development. Using Q-sorts over time may be a way to demonstrate the subjective change in peoples' values that occur through person-centred planning (PCP).

Person-Centred Planning or Person-Centred Action? A Response to the Commentaries

Abstract: This paper responds to four commentaries on our original paper in this issue. We respond to issues raised under three headings addressing the scale of the task envisaged in the 2001 White Paper Valuing People, the feasibility and effectiveness of individual planning and how to achieve person-centred action. We conclude that there is substantial agreement about the goals of intellectual disability services and the processes that need to take place around individuals to help them get what they need and want. We disagree about whether person-centred planning will deliver this, and about whether it will provide a robust basis for claiming and defending the resources people with intellectual disabilities will need in the future.

If Person‐Centred Planning did not Exist, Valuing People Would Require Its Invention

Abstract: Person-centred planning is one important tool in making the culture change necessary to realize the Government's promise in Valuing People. Some potential dangers in large scale implementation are identified, a logic for local action is described, the criteria for effective person-centred planning are defined in terms of supporting personal choice, the contribution of person-centred planning to organizational culture change is identified, the possibility of failure to implement policy change is acknowledged, and the potential benefits of person-centred planning under conditions of policy failure is described.

Evaluation of Brief Group‐Administered Instruction for Parents to Prevent or Minimize Sleep Problems in Young Children with Down Syndrome

Abstract: Background The study concerns the unknown value of group instruction for mothers of young children with Down syndrome (DS) in preventing or minimizing sleep problems. Method 1. Children with DS were randomly allocated to an Instruction group (given basic information about children's sleep) and a Control group for later comparison including objective sleep measures (actometry). 2. As a secondary exercise, parental reports of sleep problems and objective sleep measures were compared in children with DS and a small sample of unimpaired children (U group) of comparable age and sex distribution. Results Instruction (shown to have improved mothers' knowledge) was associated with improvement in behavioural sleep problem ratings at 6-month follow up with no change in sleep-related breathing problem ratings or actometry findings. Sleep-related breathing problem symptoms and actometry abnormalities were significantly more common in the DS group than in the U group at baseline, with no obvious differences for behavioural sleep problems. Conclusions Group instruction offers some benefit regarding behavioural sleep problems but not for sleep-related breathing problems to which more attention should be paid in children with DS, with a view to precise diagnosis and treatment.

Can person-centred planning fulfil a strategic planning role? Comments on Mansell & Beadle-Brown

Abstract: Policy appears to regard person-centred planning (PCP) as underpinning strategic planning. While accepting the logic of its role in planning for individuals, this commentary argues that PCP cannot fulfil a strategic planning role because the development of PCP on a wide enough scale to be useful for this purpose is itself a strategic development, which will take considerable time and resources to achieve. There is still a place for population-based norms or targets based on available epidemiological data to indicate the needed scale of provision and associated resource requirement. Three illustrations are described. In conclusion, it is noted that the current lack of indicative provision targets is a weakness of recently issued policy, an absence which does nothing to safeguard the interests of those who depend on service support.

Planning and Action: Comments on Mansell & Beadle-Brown

Abstract: Mansell & Beadle-Brown (2004) raise a number of concerns about the possible impact of the systematic introduction of person-centred planning (PCP) across services for people with intellectual disabilities in the UK. We too foresee a danger that system-wide adoption of PCP will be characterised over zealous ‘selling’ of the purported benefits without sufficient attention to the difficulties and without the necessary changes to system architecture to ensure that those involved in PCP have the authority or resources to achieve the plan's goals. If so, PCP will become another fad, and service users, and their families will become even more discouraged, disheartened and alienated by a system characterised by rhetoric rather than meaningful action. Where we differ, is in the interpretation of the existing evidence regarding the impact of individual planning systems in general and, perhaps, in the way forward.

Elicited Imitation in Children and Adults With Autism: the Effect of Different Types of Actions

Abstract: Background: It was proposed by Rogers & Pennington (1991) that an early deficit in imitation, together with a cascade of developmental disorders in emotion sharing and Theory of Mind, could be important in understanding autism. Having already found that imitation appeared not to be specifically or universally impaired in autism, the present study tested whether there were distinctions between different types of actions, such as symbolic versus non-symbolic, one-handed versus two-handed or symmetrical versus asymmetrical actions, on a test of elicited imitation. Methods: A large battery of tasks was used to elicit imitation from three groups of autistic children and adults (aged 4–34 years of age), two groups of typically developing children and a group of children with mild-to-moderate intellectual disabilities. Results: The majority of children and adults with autism had few impairments relative to the controls, although certain actions did seem more difficult, especially for the youngest children. For example, actions within the categories of 'symbolic actions' and 'asymmetrical actions' seemed to give some groups more problems. Certain types of errors such as hand reversals and using body parts as objects were found in both autistic and non-autistic groups, but, for the most part, in the youngest children in the whole sample. A final analysis compared the number of partial imitations for eight specific actions. Conclusions: The overall picture was not one of an autism-specific deficit in imitation, but rather of a normal (i.e. age-related) developmental trend. These results are discussed in terms of Rogers & Pennington's theory and other leading theories.

Service Provision for Young People with Intellectual Disabilities and Additional Mental Health Needs: Service-Providers' Perspectives.

Abstract: Background Very little is known about young people with intellectual disabilities who experience additional mental health problems. The perspective of service providers has been highlighted as one unresearched area. Method Semi-structured interviews were completed with senior service providers. Aims: (1) to explore experiences of working with young people with intellectual disabilities and additional mental health problems and their families; (2) to examine views on services’ ability to meet the needs of this group. Results Service providers identified a gulf between current policy and the reality for this group, not least in terms of all agencies working in partnership. All agencies described instances when young people in this group fall through gaps between services. Interviewees identified a range of factors that promote good outcomes. Conclusions The results suggest that the focus of current policies to promote joint working needs to be broadened beyond health and social services to ensure much improved links with education providers and the voluntary sector if the needs of this group are to be met.

Clinical and Research Implications of an Investigation into Theory of Mind (TOM) Task Performance in Children and Adults with Non-specific Intellectual Disabilities

Abstract: Background Theory of Mind (TOM) has rarely been studied in people with intellectual disabilities. Wherever it has been studied, differing results have been found. These may be attributed to a variety of factors (e.g. the different chronological ages of samples). The validity of relating TOM performance to social behaviour has also been questioned in this population. The aim of this study was to compare TOM scores with chronological age and social ability in an attempt to contribute to current debate. Methods Twenty children were matched individually with 20 adults, all with non-specific intellectual disabilities. The British Picture Vocabulary Scale, Raven's Coloured Progressive Matrices and four TOM tasks were administered to the participants. Their carers were then given various sociability measures to complete. Results The children achieved significantly higher TOM scores than did the adults. TOM and social ability were significantly positively correlated for the children, but not for the adults. These results are discussed in terms of the different social experiences of adults and children with intellectual disabilities. Conclusions Longitudinal research in this area is needed to clarify the present findings. If confirmed, the suitability of some TOM tasks used may be questionable, and there are clear implications for staff and client training.