Teresa Iacono

Health Issues for Adults with Developmental Disability.

The aim of this paper is to review recent literature on health issues for adults with developmental disability and reflect on how this research informs service provision, future research work, and social and health policy. Studies based on mortality data are most likely to aim at identifying individuals most at risk of premature death, and some researchers argue that health-oriented service systems appear ill-equipped to address the needs of the at risk groups. Morbidity studies highlight specific health concerns found in this population and commonly report high rates of untreated, yet treatable, conditions. The emerging literature on the behavioral determinants of health suggests risk of preventable morbidity and mortality because of the lack of health-promoting behaviors, particularly in relation to diet and physical activity. Of particular interest in this literature is the affect of living arrangements on health promoting activities. This paper concludes that future directions in health research for adults with developmental disability will be concerned with the complexity of the interactions between biology, pathology, and behavioral and environmental determinants. More use of self-reported health studies is suggested, as well as further exploration of effective strategies of health promotion and health promoting decision-making and self-determination among this population.

Ethical challenges and complexities of including people with intellectual disability as participants in research

Knowingly or not, every researcher submitting a proposal to a research ethics committee does so in the shadow of the Willowbrook study and other similarly infamous experiments conducted with individuals who were vulnerable because of their limited cognitive capacity and/or being in a powerless position (e.g., prisoners of war) (Beecher, 1966). Willowbrook is of particular relevance to the focus of this article because children with intellectual disability were infected with viral hepatitis without their knowledge, and the nature of the informed consent obtained from their parents was questionable (Beecher, 1966). Revelations of similar horrors that had occurred with prisoners of war were the catalysts for the development of the Nuremburg Code of 1949 and the World Medical Association Declaration of Helsinki in 1964 (World Medical Association, 2004). This declaration continues today to form the basis for ethical guidelines proposed by various government bodies, such as the National Health and Medical Research Council (NHMRC) in Australia, the National Institutes of Health in the United States, and the National Health Service in the United Kingdom. The aim of this article is to consider the implications for research involving people with intellectual disability – a vulnerable group – of ethics committees’ attempts to apply these guidelines. The issue explored is whether committees are becoming increasingly conservative in their decisions and approaches, with the potential to exclude at least some people with intellectual disability from research. Protectionism or discrimination?

Communication Options for Persons with Severe and Profound Disabilities: State of the Art and Future Directions

This article reviews the literature related to issues of communication augmentation for individuals with severe and profound intellectual disabilities within the framework of the “Participation Model” (Rosenberg & Beukelman, 1987). This model consists of a communication opportunity strand and a communication access strand. The opportunity strand is discussed briefly in terms of the knowledge and attitudinal barriers that may limit communication, with suggestions for remediation of these problems. The access strand is discussed in detail, beginning with a review of current methods of assessing capability in relevant domains. The relevant literature related to the learning characteristics of both unaided and aided communication techniques is reviewed next, followed by a discussion of potential external constraints that may affect the range of options for consideration. This information facilitates the next step of selecting communication options with a view to the current and future needs and capabilities of the individual. Following this, a review is presented of vocabulary selection and effective instructional techniques in augmentative communication interventions. Finally, evaluation issues are discussed in relation to level of disability.

The experiences of people with developmental disability in Emergency Departments and hospital wards

The aim of this study was to determine whether needs of people with developmental disability were met during visits to Emergency Departments and stays in hospital. Responses to a questionnaire were obtained from 328 clients of three Victorian organizations. Of 119 respondents who had attended a hospital within a year of completing the questionnaire, most indicated that their needs were met in the areas of hydration and nutrition, medication, mobility and discharge. There were significant associations between getting enough to drink and being able to move from a bed, and having a support person stay with the patient. These results suggested a great reliance on support people during hospitalizations. Issues raised in the questionnaire were explored in follow-up interviews with 11 respondents or their support people. Reliance on support people emerged as a strong theme in interview transcripts, as did hospital staffs negative attitudes, and lack of skills and knowledge in developmental disability. These results are discussed in light of recent literature and the need to address issues in the larger context of the needs of support people and hospital staff.

Identification of Intentional Communication in Students with Severe and Multiple Disabilities

The use of published criteria to determine the intentionality of communicative behaviors of individuals with severe and multiple disabilities is discussed in light of research with individuals with and without intellectual disability. Data were collected from four young students with severe intellectual and physical disabilities in addition to sensory deficits. Communicative sampling procedures were used to explore how behaviors other than co-ordinated attention may signal emerging intentionality. These behaviors, which included persistence, idiosyncratic behaviors, and modifications to signals, in addition to patterns of differential modality use, are discussed as potential indicators. Implications for the identification and development of intentional communication in children with severe and multiple disabilities are discussed, along with directions for future research.

The assessment of sexual knowledge in people with intellectual disability

The aims of this study were to evaluate components of a new tool, the Assessment of Sexual Knowledge (ASK), and to use it to assess the sexual knowledge of adults with intellectual disability. The ASK consists of a Knowledge Section, an Attitudes Section, a Quick Knowledge Quiz and a Problematic Socio‐Sexual Behaviours Checklist. A sample of 96 adults with intellectual disability participated in the study. The Knowledge Section was administered twice (with a one to two week interval between testing) to examine its test‐retest reliability. Inter‐rater reliability was determined by having a second scorer for approximately a third of participants. The Quick Knowledge Quiz (QKQ) was also administered to examine its relationship with the Knowledge Section. The results of this study suggest that the ASK is a tool that is reliable across examiners and will also elicit responses that are stable over time. The relationship between the Knowledge Section and the QKQ indicated that the QKQ is a predictor of knowledge scores in the ASK. In terms of people with intellectual disabilitys knowledge, the results demonstrated their poor overall knowledge of sexuality, particularly in the areas of sexually transmitted infections, sexual health, safer sex practices, legal issues and contraception.

Comparison of Sign alone and in combination with an electronic communication device in early language intervention: Case study

An alternating treatments design was implemented to compare the use of sign alone and sign in combination with an electronic device in early language intervention. The subject was a preschool girl with Down syndrome who had failed to demonstrate functional speech skills, despite evidencing symbolic play and comprehension skills at a 2-year level. The intervention incorporated the use of a scripted-play approach in which the subject and researcher cocreated scripts around two sets of props. The combined use of signs and the electronic device was found to be more effective than sign alone in eliciting single-word productions. In addition, the subject demonstrated two- and three-word combinations, which were more likely to be produced using the electronic device than in sign. An overall preference for the electronic device was evident for both spontaneous/responsive and imitated productions. The results support past research that has found augmentative and alternative communication (AAC) to be effective in f...

Gesture and word production in children with down syndrome

In this descriptive, longitudinal study, the role of gestures in the emergent language of three children with Down syndrome who were at the protoimperative and protodeclarative stages of language development was investigated. Specifically, the gestures produced by these children before and during the emergence of word production and the functions they served were explored. The childrens gestures were sampled during structured activities and mother-child interactions over a period of 5 months. The results indicated that different types of gestures serving various communicative functions were produced during structured and mother-child interactions. The most frequent gesture types were conventional, deictic, and enactive naming. The most frequent functions were comments, acknowledgments, and requests. The findings of the present study were congruent with previous research with both nondisabled populations and children with Down syndrome in demonstrating how gestural production may signal the emergence of language in both groups.

Crews, Wusses, and Whoppas: Core and Fringe Vocabularies of Australian Meal-Break Conversations in the Workplace

Conversational samples were collected from 34 nondisabled subjects across four worksites. The total sample was analyzed for core vocabulary, and the five most frequently referenced topics were analyzed for core and fringe vocabularies and the commonality of fringe vocabulary across topics. The results indicated that there was a small stable core vocabulary of 347 words containing words unique to this study, which accounted for 78% of the conversational sample. A total of 21 words in the fringe vocabulary was common to all topics. Implications of this study for vocabulary selection for augmented communicators in employment are discussed.

Social Interaction with Adults with Severe Intellectual Disability: Having Fun and Hanging Out

BACKGROUND Social interaction is integral to social inclusion. Little is known about the nature of social interaction between adults with severe intellectual disability and those with whom they engage. METHOD Participants were six adults with intellectual disability and people identified as those with whom they shared demonstrable pleasurable interactions. Data were collected through observation and interviews, and data were analysed using a constructivist grounded theory approach. RESULTS An overarching category of sharing time together with two main sub-categories of Having fun and Hanging out emerged. Having fun was composed of routines and comedic interaction; hanging out was comprised of contact and presence. CONCLUSIONS Legitimizing mirth and sharing time in social interactions may supplement paid worker job satisfaction and increase opportunities for social inclusion by people with severe intellectual disability.