Background: Engagement of individuals with an intellectual disability and their caregivers in health care has been highlighted as an essential factor in developing services that better meet client needs; however, few studies have focused on the engagement of individuals with a dual diagnosis (intellectual disability co-occurring with a mental…

Background: To improve the quality of palliative care, six evidence-based tools were implemented in 10 care services specialised in care for people with intellectual disabilities. Contextual differences were taken into account by using a participatory action research approach. Method: The RE-AIM framework (Reach, Effectiveness, Adoption,…

Background: In partnership with PHSS, a community care agency in London, Ontario, we describe the person-centred planning model. Person-centred plans (PCPs) are mandated in the community care sector and created annually through discussions with the person-supported, staff, family/friends and community members. PCPs are individualised, integrated…

Background: A comprehensive multidisciplinary medical guideline for adults with Down syndrome is lacking in the Netherlands. In this study, we aim to explore parents' views on multidisciplinary care and identify which aspects of health care they find most important in the context of developing such a guideline. Method: This qualitative study used…

Background: Long-term care services are funded primarily by Medicaid long-term services and support in the United States, where eligibility is based on care needs of the individual with intellectual and developmental disability alone. Impact of Medicaid waiver services on self-reported caregiver needs is not well understood. Method: Caregivers (n…

Background: NHS England's "Transforming Care" agenda aims to reduce the number of adults with intellectual disabilities and autistic adults in mental health hospitals. The aim was to understand the demographic and clinical characteristics of those most at risk of admission. Method: A cohort, retrospective study of adults using community…

Background: The Fragile X community has expressed a desire for centralised, national guidelines in the form of integrated guidance for Fragile X Syndrome (FXS). Methods: This article draws on existing literature reviews, primary research and clinical trials on FXS, a Fragile X Society conference workshop and first-hand experience of clinicians who…

Background: There is a lack of evidence to inform the provision of safe hospital care and treatment to children with intellectual disabilities. Methods: Interviews were conducted with 52 parents/carers of 42 children with intellectual disabilities and 98 hospital staff about the care of children with intellectual disabilities during in-patient…

Background: While barriers to participation in physical activity are well documented, there is no consolidated evidence on strategies promoting participation of people with intellectual disability in physical activities. Methods: We conducted a scoping review to examine initiatives used to facilitate the inclusion of people with intellectual…

Background: Individuals with intellectual disabilities are at increased risk of mental health disorders, but may struggle to access appropriate services. While assessment/treatment may need to be adapted, knowledge is limited about what such adaptations may entail. Method: During a service development project, the participants (33 professionals,…