Human Services Research Institute

Background Despite growing scientific evidence and health guidelines, the global health paradox persists, with rising lifestyle-related diseases and escalating healthcare costs exposing the inadequacy of current efforts. Objective Three multidisciplinary congresses were held to generate evidence-based conclusions aimed at addressing the global health paradox. Methods A total of 58 experts from 62 entities participated in the international research and knowledge-exchange panels. Experts reviewed the latest findings to develop practical strategies and identify key research and policy priorities, focusing on the Healthy Eating & Active Living (HEAL) approach. Results, conclusion, and relevance The expert consortium endorsed a 33 evidence-based consensual-statement policy roadmap for addressing global health challenges, emphasizing that the HEAL approach can significantly contribute to the “Prevention First” appeal and broad ethical, social, ecological, and economic advantages, and ultimately supporting policy change.

Abstract The influence of context on the conceptualization, measurement, and application of the quality of life concept was acknowledged in the principles contained within the originalQuality of Life Consensus Documentpublished in 2002 and validated in 2004. Since that time, there has been a substantial increase in our understanding of both the QOL construct and the multidimensional properties of context. The purpose of this article is to report on a multi‐step process conducted in 2019 by a group of international quality of life experts to review, critique, and update where necessary the QOL principles that were originally developed in 2002. Updated principles for conceptualization, measurement, and application are provided. An understanding of the role of context on the QOL concept allows for measurement guidelines to accompany the measurement principles, an understanding of the application conditions associated with a person‐ or family‐centered approach to QOL, and implementing guidelines regarding both the development of QOL‐related policies and practices and their monitoring and evaluation.

Background: A growing body of evidence attests to the disproportionate impact of COVID-19 on persons with intellectual and developmental disabilities (IDD) during the pandemic. This study asked caregivers about their perceptions of how COVID-19 impacted them and the people they support. Method: An online survey was conducted in 12 countries during August-September 2020 and sought information on demographics, support practices, information and training, experiences of COVID-19, social distancing, and wellbeing, as measured by the DASS12. This study reports on 3,754 family members, direct support professionals, and managers who participated in the survey. Results: Caregivers observed increases in depression/anxiety, stereotyped behaviours, aggression towards others and weight gain in the person(s) they supported. They also reported difficulties supporting the person(s) to access healthcare. Families reported reducing or ceasing employment and absorbed additional costs when supporting their family member. Direct support professionals experienced changes in staff shifts, staff absences, increased workload and hiring of casual staff. Caregivers’ wellbeing revealed high levels of stress, depression, and less so anxiety. The strongest predictor of wellbeing among families was observation of changes in mood in the person(s) they supported, while for direct support professionals, the strongest predictors of wellbeing were reorganisation of staff shifts and increases in new direct support staff. Discussion: Findings support the contention of this population experiencing a disproportionate burden during the COVID-19 pandemic, reflecting historical inequities in access to healthcare and other human rights violations which are now protected under the United Nations Convention on the Rights of Persons with Disabilities.

Abstract On December 13, 2006, after over two decades of advocacy efforts, the United Nations adopted the Convention on Rights on Persons with Disabilities (CRPD). More than 150 countries have ratified or at least signed this international convention, to date. An important component of CRPD implementation is a systematic effort to evaluate whether and what extent the rights as stated in the CRPD are being upheld by individual countries. The purpose of this paper was to contribute to a U.S. and international discussion about monitoring the rights of persons with disabilities as codified by the CRPD by examining the potential use of the National Core Indicators Adult Consumer Survey (NCI‐ACS) for this purpose. The NCI‐ACS collects annual quality outcome data from over 13 000 people with intellectual and developmental disabilities in 46 U.S. states. A crosswalk between the CRPD Articles and the 2013–14 NCI‐ACS was conducted to map the survey questions onto the CRPD. Forty‐seven variables from the NCI‐ACS focused on different aspects of disability rights were identified as related to 12 CRPD Articles, suggesting a moderate overlap between the NCI‐ACS and the CRPD. Next steps are discussed.

Employment provides an important avenue to social inclusion for most adults. A range of productivity options exist for persons with intellectual and developmental disabilities (IDD) who wish to work, each offering unique challenges relative to inclusion. This qualitative study examined the productivity experiences of people with intellectual and developmental disabilities in Ontario, Canada. A purposive sample of 74 individuals with productivity experiences spanning the spectrum of no employment to community-based jobs was selected from a pool of volunteers recruited through a mailed survey. Semi-structured interviews were conducted with individuals and family members. Interview transcripts were subjected to a team-based analysis using grounded theory methods. Varying needs and interests exist in regard to work. Participants revealed a multitude of factors contributing to inclusion and exclusion through productivity. Productivity, whether paid or unpaid, can be an avenue to social inclusion. The experience of inclusion, particularly of belonging, depends on a successfully negotiated congruence between worker attributes and the social features and demands of the work environment.

the 200 chosen AAAs for a complete list of their LSPs and randomly selected 5 LSPs from each AAA-provided list. Fielded in spring of 2015, the LSP online survey collects data about a wide variety of services provided, while concentrating in depth on education and respite services. Additional data collected includes caregiver assessments, evidence-based interventions, service plans, and barriers to the provision of services.

Adults with ID/DD live in increasingly small community settings, where the risk of loneliness may be greater. We examined self-reported loneliness among 1,002 individuals with ID/DD from 5 states in relation to community residence size, personal characteristics, social contact, and social climate. One third reported being lonely sometimes and one sixth said they were often lonely, but loneliness was not more common for people living alone or in very small settings. More loneliness was reported by residents of larger community living settings of 7 to 15 people. More social contact and liking where one lives were associated with less loneliness. Social climate variables, such as being afraid at home or in one's local community, were strongly associated with greater loneliness.

In this paper we describe three approaches to assessing evidence for stakeholders interested in evidence-based practices: narrative reviews, systematic reviews (including meta-analyses), and registries. We then compare the approaches in terms of the degree to which they posses desired attributes of evidence assessments. Our review suggests that hybrid approaches that combined the best features of all three should be pursued to further the use of evidence-based practices, and that such hybrids are possible given the capacity of the World Wide Web. We conclude by stressing the need for empirical research on evidence assessments.