An insight into implementing person-centred active support

This paper provides reflections on the implementation of an active support staff training programme for staff working in community residential facilities for adults with an intellectual disability. Outcomes for the people with an intellectual disability were consistent with recent research findings indicating that active support can lead to improved opportunities for participation in everyday activities within the home. We propose that the success of the training programme was largely influenced by three key elements: ensuring that there is expertise in, and support for, this approach to service provision among key service managers, provision of in vivo one-to-one practical staff training in addition to classroom-based theoretical input, and inclusion of elements of person-centred planning approaches in combination with active support. Future research should focus on how best to maximise the effectiveness of active support staff training.

Conceptualization, measurement, and application of quality of life for persons with intellectual disabilities: report of an international panel of experts

In this article a number of issues involving the concept of quality of life as applied to persons with intellectual disabilities are summarized, and a number of agreed-upon principles regarding its conceptualization, measurement, and application are presented. We realize that the concepts and models presented in this article will vary potentially from country to country, and even from area to area within countries. The cross-cultural understanding of the concept of quality of life is in its infancy, and we hope that the discourses resulting from the material presented in this article will facilitate both cross-cultural understanding and collaborative work. The article reflects current thought about the conceptualization, measurement, and application of this increasingly important and widely used concept in the field of intellectual disabilities and sets the stage for its continuing development.

Auto-amputation of the tongue associated with flupenthixol induced extrapyramidal symptoms.

We report a case of tongue auto-amputation in a mentally retarded patient after a flupenthixol injection. Four days after flupenthixol administration, the patient developed orolingual dyskinetic movements involving mainly tongue biting and protrusion. Self-mutilation in this case may be secondary to flupenthixol induced acute atypical orolingual dyskinesia in the face of mental retardation.

Facilitated communication and authorship: a systematic review

Facilitated Communication (FC) is a technique whereby individuals with disabilities and communication impairments allegedly select letters by typing on a keyboard while receiving physical support, emotional encouragement, and other communication supports from facilitators. The validity of FC stands or falls on the question of who is authoring the typed messages--the individual with a disability or the facilitator. The International Society for Augmentative and Alternative Communication (ISAAC) formed an Ad Hoc Committee on FC and charged this committee to synthesize the evidence base related to this question in order to develop a position statement. The purpose of this paper is to report this synthesis of the extant peer-reviewed literature on the question of authorship in FC. A multi-faceted search was conducted including electronic database searches, ancestry searches, and contacting selected authors. The authors considered synopses of systematic reviews, and systematic reviews, which were supplemented with individual studies not included in any prior reviews. Additionally, documents submitted by the membership were screened for inclusion. The evidence was classified into articles that provided (a) quantitative experimental data related to the authorship of messages, (b) quantitative descriptive data on the output generated through FC without testing of authorship, (c) qualitative descriptive data on the output generated via FC without testing of authorship, and (d) anecdotal reports in which writers shared their perspectives on FC. Only documents with quantitative experimental data were analyzed for authorship. Results indicated unequivocal evidence for facilitator control: messages generated through FC are authored by the facilitators rather than the individuals with disabilities. Hence, FC is a technique that has no validity.

The use and abuse of 'community' and 'neighbourhood' within disability research: an exposé, clarification, and recommendation

Almost invariably in the disability literature, the terms 'neighbourhood' and 'community' are used as though they have some commonly understood meaning. They do not, and authors rarely offer a definition. This problem adds opacity to the literature describing people's living environment and the nature of their interaction with others living in the same area. This ambiguity becomes crucial to understanding when these terms are linked to other vague, but emotionally-charged words, such as 'inclusion' or 'integration'. This review presents some of the ways 'neighbourhood' and 'community' may be correctly employed. It also explores the theoretical basis for understanding how and why their use may be misleading. Finally, it is demonstrated that the assumed relevance of neighbourhood participation for life quality has been greatly exaggerated. We recommend that authors carefully define their use of these terms in order to facilitate understanding free from emotional bias.