Poverty and people with intellectual disabilities

Epidemiological studies have consistently reported a significant association between poverty and the prevalence of intellectual disabilities. The available evidence suggests that this association reflects two distinct processes. First, poverty causes intellectual disabilities, an effect mediated through the association between poverty and exposure to a range of environmental and psychosocial hazards. Second, families supporting a child with intellectual disabilities and adults with intellectual disabilities are at increased risk of experiencing poverty due to the financial and social impact of caring and the exclusion of people with intellectual disabilities from the workforce. It is likely that the association between poverty and intellectual disabilities accounts in part for the health and social inequalities experienced by people with intellectual disabilities and their families. Implications for policy and practice are discussed in relation to the funding of services for people with intellectual disabilities and preventative approaches to addressing the health and social inequalities experienced by people with intellectual disabilities and their families.     

A follow up study of a behavioral program for young people with learning disabilities and challenging behavior

This paper describes a pilot follow-up study of a behavioral program for 20 young people with learning disabilities and challenging behavior. Eighteen participants made good overall improvement during the treatment period, and this was partially maintained at follow-up. Eight had continued to improve, eight had deteriorated slightly and four had deteriorated markedly. Adaptive skills were generally maintained. The reemergence of challenging behaviors explained the difference between the Good and Poor Outcome groups. Those participants in the Good Outcome group were younger on admission, scored lower on adaptive skills and higher on challenging behaviors. In addition they had remained on the treatment programme for 12–18 months and had been discharged from the Unit for longer. The overall level of independent living had increased from preadmission and the majority of participants were living in less restrictive placements. These results confirm and extend the findings of previous research. The paper concludes by highlighting the need for more detailed longitudinal follow-up studies in this area.     

Perceptions on well-being at home of families with people with disabilities: A psycho-environmental perspective

Introduction

Although the home is of major importance in the lives of people with disabilities, few studies address disability in the literature on home and health. Moreover, people with disabilities and their family members’ perceptions of their homes has rarely been explored.

Empowering people with physical disabilities through advocacy skills training

Members of an advocacy organization for people with physical disabilities were trained to identify and report issues at group meetings. In addition, two consecutive chairpersons were trained to conduct action-oriented meetings. Measures of group members' activities outside meetings and related outcomes on identified issues were also collected. Results indicated increases in the number of disability-related issues reported by trained members and consistent improvements in chairperson performance following training. Retrospective interviews and permanent records showed that advocacy activities, as well as the outcomes of members' actions, increased after training. These findings and their implications for the empowerment of people with disabilities are discussed.     

Developing empowering research practices with people who have learning disabilities

In this paper we report an exploratory attempt to design a practice that facilitates the extent to which ‘researched-upon’ and ‘researcher-on’ can be cooperatively involved in the planning, data collection and interpretation of research in the field of learning disability and community living. The informants were four people with learning disabilities who had been residents of long-stay mental hospitals but, at the time of the study, had all been living in the community for at least 1 year. After an extended period of informal familiarization, the research had three main phases. The first phase consisted of five individual, non-directive, depth interviews over a 2-month period. The second phase consisted of a meeting in which each participant became a paid co-researcher involved in the design and planning of the next phase of the research. The third phase consisted of three 1-hour guided neighbourhood tours led by the participants who had become co-researchers. Over the course of the three phases, the role of the researcher gradually became more a ‘newcomer-learner’ as he adopted the role of co-researcher and the role of participants with learning disabilities gradually became more ‘expert-teachers’ as they adopted the role of co-researchers. As the research progressed, the balance of power shifted, although modestly, in favour of those with learning disabilities. This led to an improvement in the quality and effectiveness of communication and understanding and an increase in the satisfaction with and enjoyment of the research process for all those involved. © 1998 John Wiley & Sons, Ltd.     

A cascade of disparities: health and health care access for people with intellectual disabilities

People with ID represent approximately 2% of the population and, as a group, experience poorer health than the general population. This article presents recent conceptualizations that begin to disentangle health from disability, summarizes the literature from 1999 to 2005 in terms of the cascade of disparities, reviews intervention issues and promising practices, and provides recommendations for future action and research. The reconceptualization of health and disability examines health disparity in terms of the determinants of health (genetic, social circumstances, environment, individual behaviors, health care access) and types of health conditions (associated, comorbid, secondary). The literature is summarized in terms of a cascade of disparities experienced by people with ID, including a higher prevalence of adverse conditions, inadequate attention to care needs, inadequate focus on health promotion, and inadequate access to quality health care services. Promising practices are reviewed from the perspective of persons with ID, providers of care and services, and policies that influence systems of care. Recommendations across multiple countries and organizations are synthesized as guidelines to direct future action. They call for promoting principles of early identification, inclusion, and self-determination of people with ID; reducing the occurrence and impact of associated, comorbid, and secondary conditions; empowering caregivers and family members; promoting healthy behaviors in people with ID; and ensuring equitable access to quality health care by people with ID. Their broadscale implementations would begin to reduce the health disparity experienced by people with ID.     

A systematic evaluation of preferences identified through person-centered planning for people with profound multiple disabilities

Person-centered planning is becoming a popular means of designing supports for people with disabilities. However, very little research evaluating person-centered planning exists. We evaluated the degree to which items and activities reported to be preferred in person-centered plans represented accurate preferences based on how individuals responded when presented with the items and activities. Person-centered planning meetings were conducted with 4 individuals with profound multiple disabilities to develop preference maps and to identify leisure-related preferences. A sample of the reported preferences in the plans was then systematically assessed by observing each participant's approach and avoidance responses to the items and activities. Of the sampled items and activities reported to be preferred in the plans, 42% represented moderate preferences based on the latter assessment process and 33% represented strong preferences. With 2 participants, several preferences identified in the plans were nonpreferred items and activities based on the preference assessments, and some were frequently avoided. These results suggested that although person-centered plans may identify some accurate preferences for people with profound multiple disabilities, this approach should be used cautiously. Results also suggested that such plans should be supplemented with systematic preference assessments to ensure the accuracy of identified preferences. Future research areas focus on evaluating other aspects of person-centered planning.     

Prevalence of maltreatment of people with intellectual disabilities: a review of recently published research

Maltreatment can have a profound adverse effect on the health of individuals with intellectual disabilities (ID). People with ID may also be more likely to experience maltreatment than other groups. Historically, data on prevalence of maltreatment among people with ID have been sparse and methodologically weak but have suggested that the scope of the problem is considerable. Studies published between 1995 and 2005 were reviewed to determine estimated maltreatment prevalence among people with ID based on recent literature. Prevalence estimates for people with ID were compared to estimates for people with no disabilities and people with other types of disabilities. Only five studies provided maltreatment prevalence estimates for people with ID. The limited data suggest that maltreatment is more prevalent for people with ID than for people with no disabilities and may be higher for people with ID than for people with certain other disabilities. Most of the available research is still based on convenience samples. More population-level data are needed to provide reliable estimates of the prevalence of this important health problem.     

Developing an understanding of the literature relating to the moral development of people with intellectual disabilities

Recent reviews of moral development theory (Gibbs, Basinger, Grime, & Snarey, 2007) demonstrate that revisionist theoretical perspectives have cross cultural validity, but moral development in relation to people with intellectual disabilities (IDs) has not been considered within this literature. A structured review of the published literature relating to children, adolescents and adults with IDs, and moral development was carried out. Twenty studies meeting the inclusion criteria were found. The review indicated that people with IDs may not progress through the developmental stages of moral reasoning as quickly as typically developing peers, or reach the more advanced stages. This difference from non-disabled peers tends to disappear if groups are matched on some measure of cognitive ability. However, the studies are fraught with methodological problems and there is a need for further research, given the theoretical developments within the area of moral development, including the evidence of a relationship between moral development and anti-social behaviour amongst typically developing children and adolescents.     

A job-seeking self-efficacy scale for people with physical disabilities: preliminary development and psychometric testing

People with disabilities are at an increased risk of unemployment. The role of interventions aiming to enhance the employment prospects of people with disabilities is receiving increased attention. However, evaluation is hampered by the paucity of measures specific to the needs of the target population. The purpose of the present study was to develop and conduct preliminary testing of the psychometric properties of a job-seeking self-efficacy (JSS) scale that reflected the experiences of people with physical disabilities. Job-seeking self-efficacy was defined as perceived ability to perform the skills involved in seeking employment that are salient to people with disabilities. Scale development and testing involved four studies and resulted in the 12-item JSS scale and six-item managing disability at interview (MDI) component, both of which were unidimensional and had high internal consistency. In addition, there was evidence of construct and concurrent validity. Greater jobseeking self-efficacy and perceived ability to manage disability at interview were associated with more positive psychological well-being. Only the MDI component was associated with physical functioning: lower perceived ability to manage disability at interview was associated with greater impairment of physical functioning. The pattern of associations supported the rationale for a separate component reflecting the need to resolve practical issues linked to access and availability of facilities before participation in the interview procedure per se .     

Failure to detect changes to people during a real-world interaction

Recent research on change detection has documented surprising failures to detect visual changes occurring between views of a scene, suggesting the possibility that visual representations contain few details. Although these studies convincingly demonstrate change blindness for objects in still images and motion pictures, they may not adequately assess the capacity to represent objects in the real world. Here we examine and reject the possibility that change blindness in previous studies resulted from passive viewing of 2-D displays. In one experiment, an experimenter initiated a conversation with a pedestrian, and during the interaction, he was surreptitiously replaced by a different experimenter. Only half of the pedestrians detected the change. Furthermore, successful detection depended on social group membership; pedestrians from the same social group as the experimenters detected the change but those from a different social group did not. A second experiment further examined the importance of this effect of social group. Provided that the meaning of the scene is unchanged, changes to attended objects can escape detection even when they occur during a natural, real-world interaction. The discussion provides a set of guidelines and suggestions for future research on change blindness.     

Training direct service staff in congregate settings to interact with people with severe disabilities: A quick,effective and acceptable program

An area of traditional as well as recent concern in congregate settings for people with severe disabilities is ensuring frequent social interactions between direct service staff and individuals who live in the residences. This study evaluated a program for training staff to interact frequently and positively across clients while in group situations in living units. The program involved a short classroom instructional session encompassing less than 1 h, followed by a maximum of 4 brief on-the-job observations and feedback sessions. Results indicated interaction rates of all 9 participating direct service staff increased above a normative criterion rate while participating in the training program. All staff also increased the proportion of their social interactions with clients that were positive in nature, and 6 of the 9 staff increased their distribution of interactions across clients. The improved interaction performances occurred when staff were provided with immediate on-the-job feedback regarding their performances as well as when provided with delayed feedback. Acceptability measures indicated the training program was well received by staff, although program components also were noted that may have affected staff acceptance differentially. Directions for future research are suggested in regard to further evaluating and increasing staff acceptance of effective training procedures.     

Preparing direct service staff to teach people with severe disabilities: A comprehensive evalution of an effective and acceptable training program

In light of the continuing need for residential, direct service staff to be able to teach people with severe disabilities, we comprehensively evaluated a program to train staff in behavioral teaching strategies. The program was developed and evaluated with attention given to recent concerns in the staff management literature regarding shortcomings with staff training research. The training program, involving a maximum of four, 2-hr classroom instruction sessions and three in vivo observation and feedback sessions, was evaluated in four studies. In Study 1, the program was shown to improve verbal skills of 13 direct service staff regarding behavioral teaching principles and terminology. In Study 2, the program was demonstrated to improve performance based teaching skills of nine staff and four staff supervisors. In Study 3, the program was shown to result in improvements in adaptive skills of three clients with severe disabilities when direct care staff used their newly acquired teaching skills with the clients. In Study 4, the training program was shown to be well received among 17 staff trainees, although the trainees were more accepting of some program components than others. Results of the studies are discussed in regard to the importance of agencies providing effective and acceptable staff training programs. Future research areas also are noted, focusing on the need to determine, and minimize where possible, the amount of time required to conduct successful staff training.     

Virtual reality in the rehabilitation of people with intellectual disabilities: review.

Virtual reality (VR) possesses many qualities that give it rehabilitative potential for people with intellectual disabilities, both as an intervention and an assessment. It can provide a safe setting in which to practice skills that might carry too many risks in the real world. Unlike human tutors, computers are infinitely patient and consistent. Virtual worlds can be manipulated in ways the real world cannot be and can convey concepts without the use of language or other symbol systems. Published applications for this client group have all been as rehabilitative interventions. These are described in three groups: promoting skills for independent living, enhancing cognitive performance, and improving social skills. Five groups of studies are reviewed that utilize virtual technology to promote skills for independent living: grocery shopping, preparing food, orientation, road safety, and manufacturing skills. Fears that skills or habits learnt in a virtual setting would not transfer to the real world setting have not been supported by the available evidence, apart from those studies with people with autistic spectrum disorders. Future directions are in the development of more applications for independent living skills, exploring interventions for promoting motor and cognitive skills, and the developments of ecologically valid forms of assessment.     

A psychological approach to ethics

This article has the purpose of calling attention to C.G. Jung's archetypal concept of the Self as an approach to ethics. The distinction between simple morality and transcendent ethics is established. Comparison is made between the archetype of the Self and Kant's categorical imperative. Freud's superego, however, is assimilated to a natural outlook on morality, such as the notion of altruism in sociobiology. The superego is only the psychic effect of the current moral code—which could be explained either culturally or as a Lamarckian acquired characteristic of the unconscious. Jung's transcendent ethics is expressed in an ethical mandala.     

Integrating instructional procedures into traditional congregate care situations for people with severe disabilities

Many institutional and community residential agencies experience difficulties in providing habilitative services when direct care staff are working with groups of people with severe disabilities. We evaluated a means of assisting direct care personnel in integrating instructional strategies into traditional congregate care situations. In Experiment 1, integrated teaching strategies were operationalized for two direct care staff persons. The strategies were based on individualized client habilitative goals and the use of brief response prompting and contingent reinforcement paradigms. The staff members integrated the teaching procedures into their group routines with clients upon implementation of an integrated-teaching staff training and management program. The program involved two staff training sessions and ongoing performance feedback. In Experiment 2, four staff members in another living unit integrated the strategies into their group routines upon implementation of a simplified version of the program. Additionally, while the program was in effect, adaptive behaviors increased in frequency for 19 of 20 clients with profound multiple disabilities. Results of the experiments demonstrate a means through which residential agencies may enhance provision of continuous active treatment in accordance with clinical and governmental guidelines. Suggestions for future rescarch are provided, focusing on overcoming obstacles residential personnel face in providing treatment services in congregate situations.