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.

Social inclusion is recognized as a fundamental right in the United Nations Convention on the Rights of Persons With Disabilities (2006). Inclusion is also an explicit goal for community-based services in many countries. However, existing definitions of social inclusion are insufficient to support the development of policies and services, and the evaluation of their success in promoting social inclusion. Furthermore, existing definitions and measures tend to overlook the perspective of persons with disabilities and their significant others. Using a consensus building strategy, we developed a framework of social inclusion, which included the perspective of adults with intellectual disability. The proposed framework supports the development and evaluation of social inclusion policies and service outcomes.

Persons with intellectual and developmental disabilities (IDD) have the right to participate in research with dignity and respect. Information about persons with IDD is often acquired from third parties; however, they are capable of, and want to be included in, research. Nevertheless, current practices to protect persons with IDD from harm may preclude them from participating in research. Therefore, inclusive research requires ethical and practical considerations to ensure that persons with IDD are treated fairly. In this chapter, experiences and recommendations in four aspects of ethical research with persons with IDD are shared: (1) accessibility, (2) consent, (3) confidentiality, and (4) research participation risks. Interactions with research ethics boards are used to illustrate the complexity of these ethical considerations and the need for guidelines.

Background There is a lack of information about cross‐sector service use by children with developmental disabilities despite their need for services from multiple sectors. Methods Responses to service use questions from a parent‐completed survey on school‐aged children who attended clinics specific for those with developmental disabilities at a Canadian children's hospital were examined. Results School meetings were the most common of three professional meeting types attended in the last 12 months (64.9%) for the sample of 205 children. Recreational services were the most common of five service types received in the same time period (79.0%). Using ordinal logistic regression models, a higher number of behavioural difficulties was the only variable consistently related to indices of more meeting types (school, physician, other) attended and more service types received (recreation, respite, etc.). Conclusions The service relationship with behavioural problems, and not socio‐demographic variables, is consistent with a needs‐based oriented delivery system.

Objectives To examine the impact of the dissemination of guidelines to physicians and of a population-level health communication intervention on the percentage of adults with intellectual and developmental disabilities (IDD) receiving preventive care through primary care. Methods Noninstitutionalized adults with IDD in the province of Ontario, Canada, aged 40 to 64 years were matched to Ontarians without such disabilities each fiscal year (FY) from 2003 to 2016. Health administrative data were used to create a composite measure of receipt of recommended preventive primary care. Age-adjusted rates were used to assess trends, and average two-year rate ratios (RRs) and confidence intervals (CIs) were used to evaluate the effectiveness of the interventions. Results The number of adults with IDD identified ranged from 20 030 in FY 2003 to 28 080 in FY 2016. The percentage of adults with IDD receiving recommended preventive primary care ranged from 43.4% in 2003 to 55.7% in 2015. Men with IDD had a 53.7% increase across the 13 years, while women with IDD only had a 30.9% increase. When evaluating the impact of the interventions, men with IDD were 4% more likely (RR: 1.04; 95% CI: 1.02–1.05) to receive recommended primary care in FY 2015 and FY 2016 as compared to FY 2009 and FY 2010; in contrast, women with IDD were 5% less likely (RR: 0.95; 95% CI: 0.93–0.98). A comparable drop was observed among women without IDD. Conclusions Nearly 45% of adults with IDD in Ontario still do not receive recommended preventive care through primary care. Long-term impacts of the interventions introduced in the province may still occur over time, so ongoing monitoring is warranted. Special attention should be given to the preventive care needs of women with IDD.

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Children with Down syndrome require services from different sectors over time to optimize health and development, however, there is little information on longitudinal, cross-sector service use. Parents of children with Down syndrome attending a Canadian children's hospital participated in semistructured interviews covering life-time multiple sector service use. Five key service patterns were identified: (1) primary care physicians playing a circumscribed role; (2) a marked shift in public habilitative service receipt from development agencies in the preschool years to exclusive school delivery after school entry; (3) families obtaining private services to address gaps from public sector services; (4) a prominent role for parents to identify additional services; and (5) service variability as a function of timing and severity of medical comorbidity.