Individuals with intellectual and developmental disabilities (IDD) may experience significant and disproportionate distress during a pandemic. Among many disparities with the general population, individuals with IDD are more likely to experience communication difficulties, co-morbid physical and mental health conditions, and inequities in health care access and health promotion. Without appropriate support, individuals with IDD may be unable to alert others to the onset of symptoms, may find the experience of restrictive practices unsettling prompting an escalation in behaviours that challenge, and they and their caregivers may experience inequitable access to healthcare, raising significant ethical issues in the context of under-equipped health systems. The UN Convention on the Rights of Persons with Disabilities affirms the rights of all persons with disabilities to enjoy the highest attainable standard of health without discrimination on the basis of disability. This project aims to conduct an anonymised online survey of those supporting people with IDD, including family and paid caregivers, across a number of international jurisdictions. The survey will be conducted under the auspices of the International Association for the Scientific Study of Intellectual and Developmental Disability’s (IASSIDD) Comparative Policy and Practice Special Interest Group (CPP). CPP has representation in a number of international jurisdictions and has the expertise and experience to draft an evidence-based survey for caregivers of individuals of all ages with IDD to address these issues, and translate these surveys for dissemination with local audiences. The analyses of these data will identify, for the first time, the impact of a pandemic on the lives of people with IDD. Dissemination includes open access to the anonymised dataset, and the production of infographics and brief videos to share findings with families, service providers, national and international stakeholders including WHO, the Fundamental Rights Agency and the European Association of Service Providers for Persons with Disabilities.
