Background: Snoezelen is often used for people with profound intellectual and multiple disabilities, but scarcely evaluated. This study aimed to provide insight into the application and perceived effects of snoezelen from the perspective of support persons. Method: We conducted an international survey with professionals (n = 130) and relatives (n…

Persons with profound intellectual and multiple disabilities (PMID) are in danger of not being granted the human right to experience self-determination. Attitudes questioning the relevance of the rights of persons with significant support needs and a lack of guidance on how to practically go about ensuring self-determination might explain this.…

Background: Mothers of young adults with profound intellectual and multiple disabilities that live at home are less likely to be on the radar of formal services. We explored the experience of these mothers over the course of the COVID-19 pandemic. Methods: A qualitative study using three case studies. Transcripts were analysed using Interpretative…

Background: Persons with profound and multiple learning disabilities (PMLD) risk exclusion, both in research and as members of society. Because of their embodied communication, they face the challenges in being understood. Oftentimes, others speak on their behalf making inferences on what their perspective might be. Methods: Empathy is suggested…

Communication assessment of people with profound intellectual and multiple disabilities (PIMD) has seldom been investigated. Here, we explore approaches and decision making in undertaking communication assessments in this group of people. A questionnaire was sent to UK practitioners. The questionnaire elicited information about assessment…

Background: The aim of this study was to explore agreements in the way parents of a person with profound intellectual and multiple disabilities and professionals perceive the support in terms of its family-centredness in order to gain a better understanding of their collaboration. Method: An adapted version of the Dutch Measure of Processes of…

Background: There is little data on the collaboration between parents and professionals in the support of persons with profound intellectual and multiple disabilities. Since communication is essential to collaboration, this study analysed the frequency, means, and personal experiences of communication between parents and professionals. Method: A…

Background: Persons with less severe disabilities are able to express their needs and show initiatives in social contacts, persons with profound intellectual and multiple disabilities (PIMD), however, depend on others for this. This study analysed the structure of informal networks of persons with PIMD. Materials and Methods: Data concerning the…

People with severe disabilities (SD) communicate in complex ways, and their teachers, parents and other involved professionals find it difficult to gain knowledge and share their experiences regarding the person with SD's communication methods. The purpose of this study is to contribute to our understanding of how parents and professionals share…

The mother of a 12-year-old medically fragile profoundly deaf child, urges the utilization of speech-language paraprofessionals in the schools in light of her successful experiences with paraprofessionals and the shortage of speech-language therapists competent in sign language. Training suggestions are also provided. (Author/DB)

Over a 3-year period, interviews were conducted with parents, caregivers, teachers, and social workers of 29 young children with complex multiple disabilities in rural Alaska. Discrepancies were found between perceptions of parents and professionals about the nature of support and the focus of intervention policies and delivery systems. (RE)