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Background: There is a need to systematically compare and contrast mortality predictors and disparities in people with intellectual disabilities (ID) for global prevention strategy development. Method: Bibliographic databases and grey literature were searched using systematic review methodology and the machine learning tool "Abstrackr." Results: Fifty-four relevant articles and reports published from 2010 to 2019 were identified. Nearly all (n = 53) were from high-income countries. Mortality disparities were apparent and consistent across countries and publication years, with no evidence of a decrease over time. People with ID can still expect to live 12-23 years less than the general population and are particularly vulnerable to deaths from respiratory infections and epilepsy. Conclusions: Both population and individual-level approaches to prevention are indicated to tackle the continuing mortality disparities in people with ID, including consideration of reasonable adjustments in general population efforts to reduce health inequalities.

Background: One would assume that infection outbreaks such as the COVID-19 pandemic have a deleterious effect upon the physical, mental, and/or social functioning of people with intellectual disabilities (ID). Methods: A systematic search of four databases produced 18 articles. General information pertaining to the topics under consideration, information related to infectious diseases and ID were extracted. Results: All but one of the studies investigated the impact of infection outbreaks on the physical functioning of people with ID. Although in some instances certain studies briefly reflected on the impact of infection outbreaks on mental or social functioning, there was no empirical data available. Conclusions: There is scarce scientific knowledge on the impact of infection outbreaks on the mental and social functioning of people with ID. This underscores the exigency for further psychosocial research to both explore the impact of infection outbreaks and develop strategies to deal with them in the future.

The author of this conceptual article was awarded a Churchill Fellowship to travel to the United States, Ireland, and United Kingdom to meet with researchers, practitioners, and community agencies and review how support for people with intellectual disability is provided. A specific focus was upon provision of care for individuals who were either ageing or requiring palliative care. The project took place from June to August 2013 and involved face-to-face interviews and site visits with key academics, government representatives, and community providers in Los Angeles, Chicago, New York, New Jersey, Dublin, Edinburgh, London, Oxford, Cambridge, Bath, Bristol, Birmingham, and Stoke-on-Trent. A priority was placed upon examining how the key features of leading practice models could be implemented within the Australian environment featuring a National Disability Insurance Scheme (NDIS). On the basis of the observations of practice, key points are discussed regarding the potential for improvements to the support of people with intellectual disability within the Australian context of the NDIS. [ABSTRACT FROM AUTHOR]

Background: Examining the data collection practices implemented by postsecondary education programs for students with intellectual and developmental disability represents the first step in documenting student progress, making programmatic data-based decisions, and evaluating the overall program effectiveness in preparing students for competitive employment. Method: We administered a survey to a national sample of directors and coordinators (N = 52) of postsecondary education programs across the United States, who indicated that they collected data to gather information on student employment-related aspects and program effectiveness. Results: Results suggest that a large number of programs collect employment data during student enrolment in the program, at graduation, and postgraduation, and make data-based decisions. Conclusions: A wide variability exists in the type of data collection practices implemented by postsecondary education programs for students with intellectual and developmental disability in the United States. We discuss implications for future research and practice. [ABSTRACT FROM AUTHOR]

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. Recurring data collection by national ministries was identified and the availability of measures of poverty, exclusion, and disadvantage was assessed. Results A total of 131 recurring systems coordinated by 50 different ministries were identified. The majority included general disability but less than 25% of the systems screened ID. Of these, few provided policy-relevant data. Conclusions The scope of ID data was dismal at best, though a significant statistical infrastructure exists for the integration of ID data. Advocacy will be necessary. There is no optimal form of data monitoring, and decisions regarding priorities in purpose, targeted audiences, and the goals for surveillance must be resolved. [ABSTRACT FROM AUTHOR]

Background This paper reports the findings of a study of individual budgeting practices in state‐financed developmental disabilities services in the United States. The study's purpose was to describe key process components and methodological variables integral to consumer‐controlled, individual budgeting formats employed in state‐funded services. Method The study was conducted in two phases: a national survey sent to state agency directors in all 50 states plus Washington DC, and an in‐depth assessment of individual budgeting practices in 9 selected states. Results Data received from 84% of state developmental disabilities agencies contacted indicated considerable variability in the formats employed by states to: determine support needs of eligible individuals; equate needs to specific services; and set an amount of funding sufficient to pay for identified supports. Conclusions No single individual budgeting method is universally accepted by all state agencies. State practices differ significantly from one jurisdiction to another, although most follow a developmental , statistical or mixed methodology. [ABSTRACT FROM AUTHOR]

Background The Questions About Behavioral Function (QABF) correctly identifies maintaining variables of challenging behaviour. However, for adults who have a long history of challenging behaviours, identifying one clear function of the maladaptive behaviour is difficult. Additionally, the person may develop multiple functions of their maladaptive behaviour. Method Characteristics of single versus multiple maintaining factors were evaluated using the QABF for 88 adults with intellectual disabilities (ID). The reliability of single versus multiple maintaining factors for aggression and self-injurious behaviour was analysed. Multiple factors were analysed in terms of type of maintaining factors, and their order of importance by challenging behaviour was noted. Results The majority of behaviours examined were maintained by multiple functions. Reliability was higher for behaviours with a single maintaining variable when compared to behaviours with multiple maintaining variables. Conclusion These data appear to have implications for aetiology, assessment, and treatment of challenging behaviours in individuals with ID. [ABSTRACT FROM AUTHOR]

Having an intellectual disability increases the likelihood for exhibiting impairments in vision, hearing, and balance. The intersection of these issues has yet to be described in a large cohort. By hosting the largest public health database for individuals with intellectual disability, Special Olympics (SO) offers ∼120,000 assessments completed at competitions between 2007 and 2018. Of SO athletes assessed for vision (N = 52,521), hearing (N = 35,073), and balance (N = 31,446), 74%, 28%, and 51% demonstrated a deficit, respectively. Thirteen percent of athletes presenting to three assessments (N = 7,887) showed concurrent impairments. The high prevalence of sensory and balance impairments at younger ages (M = 28.8, SD = 14.15) compared to the general population highlights disparities faced by the intellectual disability community and should guide public health policy for improved screening and counselling. [ABSTRACT FROM AUTHOR]

Adults with intellectual disabilities experience higher rates of exploitative intimate relationships. Parents of these adults play important roles in their lives. This study examined the role of parents in the intimate relationship experiences of adults with intellectual disabilities. A mixed methods design was utilised. Parents compared experiences between their adult child with intellectual disabilities and typically developing adult child. An online survey was completed by 50 parents in the United States, and follow-up phone/video interviews were completed concurrently with a subset of 20 parents. Parents reported increased involvement in relationships of their adults with intellectual disabilities. They discussed different barriers and expectations for these relationships compared to typically developing children. Parents struggled to determine appropriate levels of involvement in the romantic relationships of their children with intellectual disabilities. This study highlights the need for coaching and mentoring for parents to help them navigate experiences successfully. [ABSTRACT FROM AUTHOR]

Adults with disabilities in low-income communities of colour are disproportionately affected by the COVID-19 pandemic. We interviewed 14 self-advocates with intellectual and developmental disabilities (IDD) to learn more about their experiences during the peak of infections, hospitalisations, and deaths in Los Angeles, between December 2020 and March 2021. A modified grounded theory analysis revealed major themes of family, making choices & going places, formal services, and employment, which are discussed in relation to the participants' sense of autonomy and access to goods and services. Implications for practice include increased access and training for adults with IDD in computer skills to maintain social engagement with video conferencing, and to utilise grocery delivery services. [ABSTRACT FROM AUTHOR]

Background Individuals with severe disability exiting school are likely to be enrolled in day activity and sheltered workshops at least as often as in supported employment. Such facilities are often staffed by paraprofessionals who may not have the skills to engage clients in meaningful activities. This article describes a 3-phase staff training project designed to increase client engagement in an adult habilitation centre. Method The first phase of the project was to develop curriculum guidelines. The second phase was conducting a series of training for paraprofessional staff. And the third was the implementation of the clinical experience. The first author conducted a graduate level methods class on site at the adult habilitation centre. Staff participants ((paraprofessional staff, supervisors, and graduate students)) learned the components of systematic instruction and developed and implemented activities for clients. Engagement was measured before and after the 5-week clinical experience. Results and conclusions The engagement of clients increased with the implementation of systematic instruction following staff training. The implications are discussed. [ABSTRACT FROM AUTHOR]

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 developmental disabilities. Results Income and asset poverty was greatest for the youngest and oldest parents. Liquid assets were relatively flat across cohorts, while net worth declined sharply for elderly parents. Income was highest among parents aged 45-54. Conclusion These findings signal significant financial vulnerability among parents of children with developmental disabilities. Policy makers should consider targeted measures to improve the financial well-being of these parents, particularly the youngest and oldest. [ABSTRACT FROM AUTHOR]

The article focuses on the growth of residential services in Australia and the United States during 1997-2002. The most significant factors increasing demand for services and supports for people with intellectual disability are growth in national population and changes in the demographic structure of the population, particularly aging. To identify the extent of real growth in residential services, the researches compared annual changes in service provision with growth of national population in Australia and the United States since 1997. By 2002, the number of consumers of Australian residential services had increased by 5.69% relative to 1997, and the Australian population had grown by 6.15% in the same period.