Background: Parenting stress was investigated in mothers with a child with Angelman syndrome (AS) or Prader-Willi syndrome (PWS), which are genetically related. Method: Mothers of 24 children with AS and 23 children with PWS (2-12 years) completed the Nijmegen Parenting Stress Index-Short, Developmental Behaviour Checklist, and Vineland Screener…

Background: People with severe intellectual disability have limited communication skills, small social networks, and may experience isolation. Little is known about how interactions occur with social network members and the role of social support. Method: An adult with a severe intellectual disability was observed in her daily environments. Her…

Background: Pervasive developmental disorders (PDDs) were originally conceptualised as a form of ("infantile") psychosis. Recently, the disorders have been viewed as separate constructs. However, there is evidence of overlapping psychopathology, pathophysiology, and occurrence of the two syndromes. Methods: A historical overview is provided. A…

The once common use of restrictive interventions (the use of restraint and seclusion) for controlling the behaviour of people with an intellectual disability is now coming under greater scrutiny by government and community sector services. Questions are being raised with respect to the clinical efficacy and ethical appropriateness of such…

Background: Little is known about child disability and dynamic aspects of poverty. Method: Analysis of data collected over a 12-month period for families (a) supporting a child with intellectual disability (n = 370), (b) supporting a child with other disability (n = 1,418), and (c) supporting a child with no disability (n = 7,215). Results: When…

The quality of the work that paid support staff carry out within services for individuals with intellectual disability is clearly crucial to achieving positive quality of life outcomes for service users. Despite this fact, support staff have been relatively neglected as a focus for research within their field. That is not necessarily to say that…

Background: Statistics are critical in holding governments accountable for the well-being of citizens with disability. International initiatives are underway to improve the quality of disability statistics, but meaningful ID data is exceptionally rare. Method: The status of ID data was evaluated in a review of 12 national statistical systems.…

Background: Understanding how financial well-being changes through the life course of caregiving parents of children with developmental disabilities is critically important. Methods: We analyse SIPP (U.S. Census Bureau) data to describe income poverty, asset poverty, income, net worth, and liquid assets of US parents (N = 753) of children with…

Background: This study examined the narrative vocabulary of typically developing children for the purpose of guiding vocabulary selection for children with complex communication needs. Method: Eight children in their first year of schooling (aged 5 years 0 months to 5 years 8 months) and 10 children in their second year of schooling (aged 6 years…

Background: In Sweden, a process involving the deinstitutionalisation of services and the establishment of community-based settings for people with intellectual disability has meant changes in meal arrangements. In the present study, we focus on the social arrangements of meals in community-based settings. Method: Participant observations were…

Disability support personnel within Australia include those who provide direct and daily care to people with intellectual disability (ID), largely in residential and day service contexts. Their roles and responsibilities are many, calling on far ranging skills. Yet, they come to these roles with levels of education that range from incomplete high…

Background: Often communication training has been directed at the communication practices of staff members working with people with multiple learning disabilities. To date, the thinking habits of staff members, which also influence interactions, have not been addressed. We identified the issues staff members perceived as important for their…

Background: The attitudes of support staff and others in the community towards the sexuality of individuals with an intellectual disability (ID) have the potential to influence opportunities for normalised life experiences in the area of sexuality. Method: A sample of 169 disability support staff and 50 employees from leisure and service…

Older people with a lifelong disability, such as intellectual disability, face significant barriers to enjoying "active ageing" as they transition into retirement. Active ageing involves enhancement of quality of life through optimising the health, participation, and security of individuals and populations (World Health Organization [WHO], 2002).…

Background: Little is known about surrogate healthcare decision-making for individuals with intellectual disability (ID). This study examined healthcare decision-making by residential-agency directors to learn their process and the extent to which the individual is included. Method: Content analysis of qualitative data from a mailed survey of…