Search

Background: The lifespan of women with intellectual disability (ID) has been steadily increasing, bringing new and unique challenges to these individuals and those who support them. Understanding these issues will help to improve support services for this population. Methods: Using inclusive research methods, 15 older women with ID were interviewed about their wellbeing and their views on growing older. Results: Interview data were analysed using the grounded theory approach. The core phenomenon identified through data analysis was "changes in life." Conclusion: The women reported a growing loss of independence as well as changes in their health and activities. Analyses revealed factors important for wellbeing as well as different coping strategies used by the women to deal with the age-related changes in their lives.

From a Westerner's perspective of the place of people with a disability in Asian society, there are similarities and differences between the two societies. A major problem for the Asian countries is their lack of reliable disability prevalence data. The stigmatization of people with a disability remains an international problem and is not confined to Asian cultures. It is argued that the environmental contexts of a culture need to be explored before making generalisations about a culture's attitudes towards people experiencing a disability. Differences between social policies toward disadvantaged groups are explored with reference to economic rationalist policies, utilitarian individualism, materialism, and the potential moral challenges presented by new genetic discoveries. The rise of globalisation and its potential impact upon traditional Asian cultures is explored. The concluding analysis examines developments in disability legislation, support services and the development of a local disability research capacity.

Introduction: Life 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. Results: 937 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. Conclusion: PRs 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. [ABSTRACT FROM AUTHOR]

Despite acknowledgement that paid caregivers have a significant impact on the lives of people with intellectual disability, the subjective experience of staff gender is rarely considered in research. Qualitative data from a study on the sexual health needs of men and boys with intellectual disability is presented. We designed this study to determine what impact staff gender has on the sexual health needs of men and boys with intellectual disability. Findings suggest that although staff traverse the same geographies of care, they do it in uniquely gendered ways. Staff gender is an important consideration when dealing with sexual health matters and can enhance the type and quality of relationships between people with intellectual disability.

People with an intellectual disability have existed across human history, making up a part of all cultures. They represent a small part of the extremely wide variety of people in the human population at any one time. This review essay examines the 11th and latest Definition and Classification Manual published by the American Association on Intellectual and Developmental Disabilities (AAIDD) in the context of historical and contemporary trends in the definition and classification of intelligence; or more accurately intellectual functioning.

Background: A focus on male social pathologies may have evolved within parts of the intellectual disability research literature. This article explores this notion and makes some connections between mainstream gender theory about hegemonic masculinity and the current gendered discourse in intellectual disability research. Method: We conducted a thematic analysis of all journal article titles from four prominent intellectual disability journals where "man," "woman," "men," "women," "male," "female," "girl," and "boy" were mentioned in the title. Results: Thematic differences were identified between articles that focused on males or females, with less research attention on male health compared with female health. A strong focus was evident on problematised male sexual behaviour. Conclusions: There is a distinct difference evident between articles that problematise males and articles for females encouraging health promotion that suggests a disparate focus on male social pathologies. A deeper contextual analysis of unique sex differences in research is proposed. (Contains 2 tables.)

Background: As part of an international, multicentre project, the service and support needs of Australian family carers were investigated. Method: A sample of 1,390, 448 family carers completed a self-report survey, including an adaptation of the Family Needs Survey (FNS) and several open-ended questions. A mixed method design was used, employing quantitative and qualitative analyses. Results: On the FNS the most frequently endorsed items were those relating to the need for information about services and, in particular, future, out-of-home accommodation. Similarly, the need for respite services was endorsed by over 80% of respondents. Comments indicated that access to and the quality of respite, day support, and therapy programs were a priority. Conclusions: Participants expressed the need for greater access to information. Access to appropriate respite options, together with quality day support and therapy services, remain a priority for family carers. (Contains 3 tables.)

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-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. [For part I, see EJ843513.]

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. [For part II, see EJ841517.]

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.

This study reports the friendship experiences and aspirations of adults with intellectual disabilities. The findings of a larger study were reviewed by an expert group of self-advocates with intellectual disability. The expert group confirmed some of the interpretation of the original data and expanded on issues. Friendship is established as an issue of concern among adults with intellectual disability. Consequently, policy-makers and service providers need to be intentional about providing support for friendships. Participants asserted a positive self-identity of being a person with intellectual disability and how this could be a basis for friendship. Also, people with intellectual disability demonstrated how they should be considered experts in their own life experience and how they can be effectively included in the formulation, implementation, analysis and review of research. (Contains 1 table and 1 figure.)

Aim: Current measures for disability employment focus on system outputs, not individual outcomes. This paper proposes an employment outcome measurement approach based on social quality theory as a means of improving the quality of employment outcomes for individuals. Introduction: There is a paucity of government policies that promote practices which address the measurement of employment outcomes that reflect the goals of the individual. While there has been a recent trend towards a focus on quality of life as an outcome, process measurement and compliance to procedural regulations are still dominant. Method: A scoping review of disability employment research from the year 2000 revealed only eleven papers which specifically addressed approaches to measuring disability employment outcomes at an individual impact level. Overall, the search failed to highlight any measure that focused on the impact of employment on the individual with existing measures focused on process measurement. Conclusion: An outcomes-based approach, based on the four pillars of social quality theory, namely, social inclusion, social cohesion, self-determination, and social-economic security provide an opportunity to shift disability employment service provision towards individual outcomes rather than its existing focus on system outputs as a measure of success. [ABSTRACT FROM AUTHOR]

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.

Describes the development and evaluation of the Choice Questionnaire, an instrument designed to measure the availability of choice to people with intellectual disability. The scale can be administered by interviewing the consumer or may be completed by a knowledgeable proxy. Very satisfactory reliability and validity have been determined. (Author/DB)

The level of behavior problems in 406 students (ages 4-19) with intellectual disability was compared in "segregated" and "integrated" settings in New South Wales (Australia). A significantly greater number of behavior problems occurred in segregated settings after controlling for age, sex, and range of intellectual disability. (Author/DB)

This article traces developments over the last several decades in the vocational preparation needs of people with mental retardation, noting a predictive phase, an interventionist phase, and an ecological phase. It suggests studying vocational programs in the context of the labor market developments of individual countries and urges more community-based vocational programs. (Author/DB)

Observation of nine subjects with mild intellectual disabilities working in competitive employment settings revealed that subjects' social networks lacked complexity, with few interconnections among the network modes. Major sources of social support emanated from the family and organizations catering to people with disabilities. Social support received within the workplace did not extend beyond it. (Author/JDD)

The most significant forces to influence service delivery in integration of individuals with intellectual disabilities in Australia have been social movements, cultural phenomena, and political and economic forces rather than scientific research. A greater emphasis on how research can be translated into effective policy and practice is encouraged. (DB)

A follow-up study of 73 former special school students in New South Wales, Australia, found that 42 percent were in open employment. Those with moderate or severe intellectual disabilities were generally at sheltered workshops, activity centers, or home. Approximately 54 percent lived with their parents, and 69 percent reported a few close friends. (JDD)

This article examines the relationship between research and service provision to persons with severe mental retardation, notes frequent methodological deficiencies in current research, and proposes establishment of Australian research centers to coordinate research efforts and link research to service delivery. (DB)

The study interviewed 73 Australian young people with a range of disabilities who had completed their school program in 1985. Subjects expressed their ideas concerning successful transition from school to adult life including the need for a planned transition process, a job-related school curriculum, and structured procedures to facilitate community integration. (Author/DB)