The I-CAN : using e-Health to get people the support they need

Background: The I-CAN is a comprehensive, reliable and valid system of identifying and classifying support needs of people with disabilities based on the conceptual framework of the International Classification of Functioning, Disability and Health (ICF) [1] and the American Association on Intellectual and Developmental Disability (AAIDD) supports concept [2,3]. Originally developed for people with Developmental Disability, the I-CAN's application of internet technologies is currently being trialled in Mental Health, Rehabilitation Medicine and other disciplines. Conceptual underpinnings, research and implementation to date are summarized. Method: ICF based domains covering Health & Well Being and Activities & Participation have been refined over several versions. A total of 1012 individuals with disabilities across the eastern states of Australia were assessed using the first three versions, and 193 with the fourth versions. Studies investigated reliability, concurrent and predictive validity and user satisfaction. A fourth internet-based version has been implemented and is under continuing investigation and refinement. Results: The I-CAN instrument demonstrated good reliability and validity in studies to date. Domain scales effectively discriminated a range of intensities of support for people with various disabilities, with highest support needs generally recorded by individuals with multiple disabilities and ageing issues. Correlations between I-CAN and adaptive behaviour scales were mixed. The ICAN scales measure individual support needs. However, regression analysis suggests that staffing and other organizational factors play a significant role in resource allocation apart from individual support need. There was general satisfaction with the assessment process from stakeholders and participants groups. Several brief case examples shall be presented. Conclusions: The I-CAN provides a reliable and valid tool for assessing and reporting on the support needs of people with disabilities using a process that involves the person, their family, friends and staff as appropriate. Several possibilities exist for this unique tool and the application of the ICF framework to e-health

Psychopathology in Young People With Intellectual Disability

Context Comorbid severe mental health problems complicating intellectual disability are a common and costly public health problem. Although these problems are known to begin in early childhood, little is known of how they evolve over time or whether they continue into adulthood. Objective To study the course of psychopathology in a representative population of children and adolescents with intellectual disability. Design, Setting, and Participants The participants of the Australian Child to Adult Development Study, an epidemiological cohort of 578 children and adolescents recruited in 1991 from health, education, and family agencies that provided services to children with intellectual disability aged 5 to 19.5 years in 6 rural and urban census regions in Australia, were followed up for 14 years with 4 time waves of data collection. Data were obtained from 507 participants, with 84% of wave 1 (1991-1992) participants being followed up at wave 4 (2002-2003). Main Outcome Measures The Developmental Behaviour Checklist (DBC), a validated measure of psychopathology in young people with intellectual disability, completed by parents or other caregivers. Changes over time in the Total Behaviour Problem Score and 5 subscale scores of the DBC scores were modeled using growth curve analysis. Results High initial levels of behavioral and emotional disturbance decreased only slowly over time, remaining high into young adulthood, declining by 1.05 per year on the DBC Total Behaviour Problem Score. Overall severity of psychopathology was similar across mild to severe ranges of intellectual disability (with mean Total Behavior Problem Scores of approximately 44). Psychopathology decreased more in boys than girls over time (boys starting with scores 2.61 points higher at baseline and ending with scores 2.57 points lower at wave 4), and more so in participants with mild intellectual disability compared with those with severe or profound intellectual disability who diverged from having scores 0.53 points lower at study commencement increasing to a difference of 6.98 points below severely affected children by wave 4. This trend was observed in each of the subscales, except the social-relating disturbance subscale, which increased over time. Prevalence of participants meeting criteria for major psychopathology or definite psychiatric disorder decreased from 41% at wave 1 to 31% at wave 4. Few of the participants (10%) with psychopathology received mental health interventions during the study period. Conclusion These results provide evidence that the problem of psychopathology comorbid with intellectual disability is both substantial and persistent and suggest the need for effective mental health interventions

Influence of the Environment on Participation in Social Roles for Young Adults with Down Syndrome

Background: The concept of disability is now understood as a result of the interaction between the individual, features related to impairment, and the physical and social environment. It is important to understand these environmental influences and how they affect social participation. The purpose of this study is to describe the social participation of young adults with Down syndrome and examine its relationship with the physical and social environment. Methods: Families ascertained from the Down syndrome ‘Needs Opinion Wishes’ database completed questionnaires during 2011. The questionnaires contained two parts, young person characteristics and family characteristics. Young adults’ social participation was measured using the Assessment of Life Habits (LIFE-H) and the influences of environmental factors were measured by the Measure of the Quality of the Environment (MQE). The analysis involved descriptive statistics and linear and logistic regression. Results: Overall, participation in daily activities was higher (mean 6.45) than in social roles (mean 5.17) (range 0 to 9). When the physical and/or social environment was reported as a facilitator, compared to being no influence or a barrier, participation in social roles was greater (coef 0.89, 95%CI 0.28, 1.52, coef 0.83, 95%CI 0.17, 1.49, respectively). The relationships between participation and both the physical (coef 0.60, 95% CI -0.40, 1.24) and social (coef 0.20, 95%CI -0.47, 0.87) environments were reduced when age, gender, behavior and functioning in ADL were taken into account. Conclusion: We found that young adults’ participation in social roles was influenced more by the physical environment than by the social environment, providing a potentially modifiable avenue for intervention

The present, past and future of the study of intellectual disability: challenges in developing countries Pasado, presente y futuro del estudio de la discapacidad intelectual: desafíos en los países en desarrollo

There is strong evidence that socio-cultural factors largely determine what is seen as competent behaviour. Within western high income countries, driven by the values of utilitarian individualism, the construct of intellectual disability has been largely determined to meet the needs of urban, industrialised societies. In contrast, competence in non-industrialised societies may be more reflected in collaborative, interpersonal problem solving skills such as those found among Nigerian students labelled as intellectually disabled. However, people who are judged to be incompetent or "obtrusive" in countries deficient in support services, are often neglected and consigned to a life in poorly managed segregated institutions, as is the case in China, Russia and some countries in Eastern Europe. Non western countries that have a long history of a globalised economy, such as Taiwan and Japan also remain committed to segregated institutional provisions for people with an intellectual disability, despite a notional acceptance of inclusionary policies enunciated by the United Nations’ Declarations and Conventions. In this paper is concluded that it must be recognised that the population of people with an intellectual disability, regardless of how the condition is defined and classified, is quite heterogeneous. Their needs are also varied and not at all dissimilar to those of the general population. As developing countries adopt western style consumer-driven economies, there is an extreme danger that they, too, will follow the same trajectory of exclusion and impose the culture of "otherness" for a group whose contribution to that society will be devalued. Good science is futile unless it benefits all peoples.<br>Existe amplia evidencia de que los factores socioculturales determinan en gran medida la percepción de conducta competitiva. En los países occidentales de altos ingresos, dominados por los valores del individualismo utilitario, las necesidades de las sociedades urbanas industrializadas han sido el principal determinante del concepto de discapacidad intelectual. A diferencia de esto, en las sociedades no industrializadas, la competencia puede verse mejor reflejada en las habilidades colaborativas, interpersonales para la resolución de problemas, tales como las que se encuentran entre estudiantes nigerianos considerados como intelectualmente discapacitados. Sin embargo, en los países deficientes en servicios de apoyo, a las personas consideradas incompetentes o "impertinentes" con frecuencia se les descuida y se les obliga a vivir en instituciones segregadas pobremente administradas, como por ejemplo en China, Rusia y en algunos países de Europa Oriental. Otros países no occidentales que tienen una larga historia de economía globalizada, como Taiwan y Japón permanecen igualmente fieles al modelo de instituciones segregadas para las personas con discapacidad intelectual, a pesar de una aceptación nominal de las políticas inclusivistas enunciadas por las declaraciones y convenciones de las Naciones Unidas. En este artículo se concluye que se debe reconocer la heterogeneidad que existe entre la población con discapacidad intelectual independientemente de cómo se defina y clasifique la condición. Sus necesidades son asimismo variadas y no disímiles respecto de las de la población general. En la medida en que los países en desarrollo adoptan economías de estilo occidental, orientadas hacia el consumo, existe un gran riesgo de que sigan también la misma trayectoria de exclusión y le impongan la cultura de la "otredad" a un grupo cuya contribución a esa sociedad sería devaluada. A menos que beneficie a todos la buena ciencia es inútil

The evolution of person-centred planning in supporting people with a developmental disability

This chapter outlines the history of case management in the field of developmental disability, and provides a rational and evidence base for more contemporary approaches. Contemporary principles underpinning the delivery and their families include self-determination and empowerment. These principles are operationalised through a process known as ‘person-centred planning’ wherein the person with a disability is the focal point for the planning process. Where relevant, family members, friends and general community members assist in defining the person’s friends and general community members assist in defining the person’s profile and their future vision, and identify how formal and informal network can provide support. Critical to this process are the preferred goals of the person with the disability towards achieving a satisfying quality life. In this chapter, discussion will be guided by a case study. The case study will develop as the chapter unfolds, demonstrating in practical terms the evolutionary changes in case management practices in the developmental disability field

The Relationship Between Neurobehavioural Problems of Severe Traumatic Brain Injury (TBI), Family Functioning and the Psychological Well-Being of the Spouse/Caregiver: Path Model Analysis

This study used a modern theory of stress as a framework to strengthen the understanding of the relationship between neurobehavioural problems of TBI, family functioning and psychological distress in spouse/caregivers. The research was an ex post facto design utilising a cross-sectional methodology. Path analysis was used to determine the structural effect of neurobehavioural problems on family functioning and psychological distress. Forty-seven female and 17 male spouse/caregivers of partners with severe TBI were recruited. Spouse/caregivers who reported partners with TBI as having high levels of behavioural and cognitive problems experienced high levels of unhealthy family functioning. High levels of unhealthy family functioning were related to high levels of distress in spouse/caregivers, as family functioning had a moderate influence on psychological distress. Furthermore, indirect effects of behavioural and cognitive problems operating through family functioning intensified the level of psychological distress experienced by spouse/caregivers. Additionally, spouse/caregivers who reported high levels of behavioural, communication and social problems in their partners also experienced high levels of psychological distress. This study was significant because the impact of TBI on the spouse/caregiver from a multidimensional perspective is an important and under-researched area in the brain injury and disability field

Working with the experts: Collaborative research with people with an intellectual disability

This paper reports on part of a wider study concerned with the collaborative efforts of an inquirer and six people with an intellectual disability, to develop a grounded theory explaining the processes by which these informants manage the relationships within their personal communities. The study was conducted through a series of in-depth interviews with each informant; a process characterised by information sharing, tentative theory development and elaboration, and informants' checking the accuracy of the emerging theory. This inductive approach allowed not only an insight into the lives of each informant, but recognised the informants' expertise in matters concerning their own lives and thus facilitated the emergence of theoretical elements of relevance to the informants themselves. The focus of the paper is on the collaborative or partnership approach adopted. The outcomes of the research partnership are detailed and implications drawn for the role of research in the lifestyles of people with an intellectual disability

Family control: The views of families who have a child with an intellectual disability

This paper, reporting on part of a wider study, explores the views held by 68 families, who have a child with a disability, of their perceptions of lifestyle control or empowerment. In particular, the paper seeks to examine whether these families perceive their interactions with service providers to be consistent with family-empowerment principles. Individual open-ended interviews were conducted with these family members, yielding information on their perceptions of their control over their family lives, and on their views as to how their interactions with service providers might be conducted in such a way as to recognize and enhance such control. The implications for professionals working with families in a manner that recognizes family members as truly equal partners and that promotes and enhances genuine family empowerment are discussed

Intellectual disability and mental illness in the NSW criminal justice system

There has been increasing international, national and local recognition of the need for more appropriate responses and services for individuals who come in contact with the criminal justice system and who have an intellectual disability and mental health issues. This article provides an overview of prevalence data that indicates a significant over representation of people with intellectual disabilities in correctional facilities and reviews the problems facing this population. Findings from two specific evaluation studies undertaken by the Centre for Developmental Disability Studies are presented, along with recommendations for future provision based on these results. One of these projects trialled a case management approach to supporting offenders with an intellectual disability upon their release from prison. The 20-month follow-up found that a number of serious barriers were encountered within the overall system of provision for this population; the most serious of which related to lack of adequate accommodation upon release. The second project involved a two-stage evaluation of one model of provision for individuals with intellectual disabilities who are sex offenders, only some of whom were on parole. This service provided both residential and therapy services in a small group home located in the community. Residents were found to have high levels of emotional and behavioural difficulties, in addition to offending behaviour, that continue to require support and supervision. Critical issues, including guardianship involvement, restrictive practices and retrieval, therapy provision, and risk management issues are discussed in relation to overall clinical and lifestyle outcomes