We define a sense of belonging as a subjective feeling of value and respect derived from a reciprocal relationship to an external referent that is built on a foundation of shared experiences, beliefs or personal characteristics. These feelings of external connectedness are grounded to the context or referent group, to whom one chooses, wants and feels permission to belong. This dynamic phenomenon may be either hindered or promoted by complex interactions between environmental and personal factors.
Individuals with intellectual and developmental disabilities (IDD) experience high rates of social and health disadvantage. Planning effective services that meet the needs of this vulnerable population requires good population-based data that are collected on a routine, ongoing basis. However, in most jurisdictions, none of the commonly available data (e.g., health or disability benefits administrative data) completely captures the IDD population. To more accurately identify persons with IDD in a population, one solution is to link data across multiple sources. To do this, the authors report on an effort to create a linked database to identify a cohort of adults, aged 18-64, with IDD in Ontario and use these data to examine how the linkage can help study health and healthcare access. The linked dataset was created using four health and one disability income support databases. Standardized differences were used to compare sociodemographic and clinical characteristics of the IDD cohorts identified through the health, disability income support, and linked datasets. Indirect estimation was used to evaluate which IDD subgroups might be over-or underestimated if only a single source of data was available. The linked database identified a cohort of 66,484 adults with IDD (0.78% prevalence). The health and disability income support data each uniquely identified approximately a third of the cohort. Health data were more likely to identify younger adults (18-24 years), those with psychiatric illnesses, and hospitalized individuals. The disability income support data were more likely to identify adults aged 35-54 and those living in lower income neighborhoods. By linking multiple databases, the authors were able to identify a much larger cohort of individuals with IDD than if they had used a single data source. It also enabled the creation of a more accurate sociodemographic and clinical profile of this population as each source captured different segments of it.
The prevalence rate produced by the intermediate algorithm most closely approximated the reported literature rate suggesting the value of imposing a two-physician visit minimum but not restricting the time period covered. While the statistical differences among the algorithms were generally minor, differences in the numbers of individuals in specific population subgroups may be important particularly if they have specific service needs. Health administrative data can be useful for broad-based service planning for individuals with IDD and for population level comparisons around their access and quality of care.
This study profiles the evidence base relative to inclusive employment for people with intellectual disabilities. The lack of evidence on the degree to which social inclusion is being achieved through community-based employment highlights a critical area requiring attention.
Background
Effective cancer screening must be available for all eligible individuals without discrimination. Lower rates of cervical and breast cancer screening have been reported in certain groups compared with women from the general population, such as women with intellectual and developmental disabilities (IDD). Research on the factors explaining those observed differences is crucial to determine whether practices are unfair and could be improved. The aim of this population‐based study was to describe cancer screening utilisation by women with IDD in Ontario, Canada compared with other women in Ontario. The specific objectives were (1) to estimate the rates of cervical and breast cancer screening among eligible women with IDD in Ontario; (2) to compare the rates of cervical and breast cancer screening between eligible women with and without IDD; and (3) to examine if any observed differences between women with and without IDD persist after factors such as age, socio‐economic status, rurality and healthcare utilisation are accounted for.
Method
This study draws women with IDD from an entire population, and draws a randomly selected comparison group from the same population. It controls for important confounders in cancer screening within the limitations of the data sources. The study was conducted using health administrative databases and registries in Ontario, Canada. Two cohorts were created: a cohort of all women identified as having an IDD and a cohort consisting of a random sample of 20% of the women without IDD.
Results
The proportion of women with IDD who are not screened for cervical cancer is nearly twice what it is in the women without IDD, and 1.5 times what it is for mammography.
Conclusions
Findings suggest that women with IDD experience inequities in their access to cancer screening. Public health interventions targeting this population should be implemented.
Understanding how people with intellectual disabilities describe relationships, and being aware of factors that support and impede relationships, will aid stakeholders in developing training, policies, programmes and services. Knowledge translation of research that focuses on strategies aimed at supporting relationships is crucial to affect change in applied settings and improve quality of life for persons with intellectual disabilities.
This study provides insight into needs which have not been met by the service system. Information about the unmet needs of children with an autism spectrum disorder and their families may help policy makers and service providers to develop resources and services that are responsive to their client group.
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