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Abstract  Since its inception in the early 1960s, the International Association for the Scientific Study of Intellectual Disabilities (IASSID) has played an important role in advancing the scientific study of intellectual disabilities, primarily in the developed world. Through its regular world congresses, and its nongovernmental organization status with the World Health Organization, IASSID has served as a forum for bringing together scientists and professionals working the multiple fields of interest related to intellectual disabilities. Highlighted are IASSID's achievements throughout the past 40 years, with special reference to the trends of presentation content made at its regular congresses, and discussed are the challenges facing the Association, which include reaching out to developing countries and involving more researchers from the non‐English speaking world, maintaining its networking and informative role in acting as an information clearing house, and promoting the dissemination of research.

AbstractThis paper considers recent developments in terminating human life affected by intellectual and developmental disability. It brings these developments together under the heading of a progressing eugenics. It argues that the acts under discussion are eugenic with regard to their moral justification, even if not in their intention. Terminating human life in contemporary society is aiming at the alleviation of suffering, not the enhancement of the human gene pool. Three distinct cases are traced in the literature: ending the lives of severely disabled prematurely born infants, terminating pregnancies after positive outcomes of genetic screening and testing, and ending the lives of persons with IDD by means of euthanasia. It is shown from the literature that in each of these cases the justifying reason is the prospective judgment of a 'poor' quality of life, which ties these acts to the justification of terminating human life within the history of eugenics. The pervasive judgment of poor quality of life is criticized as ignoring alternative views, most of all the views of persons and families directly implicated who do not consider living with IDD identical with a life full of suffering.

AbstractIntroductionLife expectancy for people with Down syndrome (DS) has increased to 60 years, although poor oral health affects their quality of life. Panoramic radiographs (PRs) are usually well‐tolerated by people with DS and can provide valuable diagnostic data for treatment planning and research. Methods A scoping review of peer‐reviewed articles published between 1971and 2021 was conducted in accordance with the PRISMA extension for scoping reviews to determine the scope of use of PRs for people with DS.Results937 papers were screened, and 52 papers were included and charted into seven categories in this review. A high prevalence of tooth agenesis (TA) and other anomalies were reported in 45% of papers. Severe periodontal disease was considered characteristic of DS in the 1970s–80s and the benefit of time‐consuming treatment was questioned. Since 2000 case reports illustrate that improved oral care, orthodontic treatment, and dental implants under local or general anaesthetic can improve the quality of life for people with DS.ConclusionPRs play an important role in the diagnosis of anomalies, periodontal disease, and implant planning for patients with DS. This review highlights the gaps in research of caries, pathology, TMJ, systemic disease indicators, and guidelines for dentists. Systematic PR viewing, with a knowledge of characteristic features of DS, will assist diagnosis of pathology and improve comprehensive dental care treatment planning for children and adults with DS.

Background  The supports paradigm has shifted focus from assessing competence and deficits among people with disabilities to identifying supports needed to live meaningful and productive lives in inclusive settings. Consequently, a rigorous and robust system is required that is capable of accurately determining the type and intensity of support needed and of allocating resources accordingly. The aim of the present study was to develop such a system to identify and classify support needs of people with disabilities based on the conceptual framework of the International Classification of Functioning, Disability and Health (ICF) [WHO, The International Classification of Functioning, Disability and Health (ICF), Author, Geneva, 2001], and the supports concept [Mental Retardation: Definition, Classification and Systems of Support, 9th edn (1992), 10th edn (2002), American Association on Mental Retardation, Washington, DC).Method  A total of 1012 individuals with disabilities who were supported by accommodation and day programme organizations across the eastern states of Australia were assessed. The instrument was used in a team setting involving the person, their family and friends and staff as appropriate. Version 1 was administered with 595 people with disability. This version was refined according to qualitative and quantitative analyses. Another 342 individuals were assessed using Version 2, resulting in a combined data set for 936 individuals. Version 3 was then trialled with a further 76 individuals with disabilities.Results  Ten domain scales in Health and Well Being (HWB) and Activities and Participation (A&P) were explored and refined. The scales effectively discriminated a range of intensities of support for people with various disabilities, with the highest support needs generally recorded by individuals with multiple disabilities who were ageing. The instrument can be used to develop a profile of needed supports across the domain scales. These measure current and predicted support needs, and contribute to future planning. The team approach proved beneficial in this regard.Conclusions  The I‐CAN is a useful instrument for effectively assessing the support needs of people with a disability using a person centred approach. It is effective in identifying support needs across health and well‐being areas, and activities of daily living.

Background  There is an urgent need for developing reliable, valid and practical instruments that assess and classify the support needed by persons with disability to function in their chosen living, working and social environments. I‐CAN is an instrument that addresses the frequency and level of support needed (not individual skills or deficits) for each individual with a disability.Method  Studies were conducted to assess the test–retest reliability and inter‐rater reliability. Concurrent validity was investigated by exploring the relationship between the I‐CAN domain scales and the Inventory for Client and Agency Planning (ICAP) (Bruininks et al. 1986) and the Quality of Life Questionnaire (QOL‐Q) (Schalock & Keith 1993). Predictive validity studies were undertaken using day‐ and night‐time support hours. Regression analyses were run using these measures with I‐CAN domain scales. Two independent studies were also conducted to ascertain the practical utility of the instrument.Results  The I‐CAN instrument demonstrated excellent inter‐rater and test–retest reliability in the Activities and Participation domains. Low‐to‐moderate test–retest results in Physical Health, Mental Emotional Health and Behaviour domains were tracked to actual change in support needs in these areas. Validity proved acceptable. The relationships between I‐CAN domain scales and adaptive behaviour were mixed but in the expected direction. Low‐to‐moderate correlation coefficients were evident between the I‐CAN scales and the QOL‐Q Total, but greater support needed in certain domains was associated with less empowerment and independence, and less community integration and social belonging. Attempts to explain current support hours against the I‐CAN scales were disappointing and suggest that a number of other factors apart from individual support need to play a significant role. There was general satisfaction with the assessment process from stakeholders and participant groups.Conclusions  I‐CAN is a reliable, valid and user‐friendly instrument for assessing the support needs of people with disabilities. It uses a process that involves the persons with disability, their family and friends and staff as appropriate. It is also apparent that the current provision of paid support hours by agencies is a complex phenomenon that is not based solely on individual support needs. Further research is warranted on the influence of the environment and the perceptions of need for support based on negotiable and non‐negotiable support needs.

AbstractAs part of an international, multicentered project, the burden of care, health, and subjective well‐being experienced by select Australian family carers supporting a relative with disability at home were investigated. Some 448 family carers residing in New South Wales and Tasmania completed a battery of instruments, including a self‐report demographic survey, the Family Caregiver Burden Inventory, the General Health Questionnaire, and the Personal Wellbeing Index. Respondents were predominantly females (mean age = 48 years), married, and supporting a son or daughter with an intellectual disability (mean age = 18 years). Although caring for their family member was not perceived to be a burden, respondents reported notable limitations on their social networks and social activities. They reported higher levels of unemployment than would be expected for the general population and were over represented in lower income groups. They reported seriously low levels of mental health and personal well‐being when compared with the general population. The findings revealed that this group of family carers were at high risk of social and economic disadvantage and at high risk of mental health challenges. Social policy makers and service providers should take these factors into account, both in the interests of promoting the health and well‐being of the carers and considering the long‐term needs of family members with disability who rely on family carers for daily support when designing services.

Background  This study explored 'loneliness' as experienced by adults with intellectual disability, with 'intermittent' to 'limited' support needs.Method  A measure of loneliness was piloted, and qualitative techniques used to develop a greater understanding of the participants' experience.Results  The Loneliness Scale proved valid and reliable and the participants reported loneliness in ways comparable with the general population.Conclusions  The findings demonstrate the effectiveness of combining quantitative and qualitative techniques to enhance understanding of people's perspective when developing support systems to promote their quality of life. Based on participant perspectives, recommendations are made concerning the issues and types of support families and professionals could consider when seeking to assist people with intellectual disability address loneliness. Further investigation of the effects of differing educational and vocational opportunities on people's post‐school social networks appears warranted.