Impact of Covid-19 on Individuals with Intellectual and Developmental Disabilities and Caregivers
In collaboration with Professor Christine Bigby, Professor Thilo Kroll, Professor Malcolm MacLachlan, Professor Julie Beadle Brown, Gail Birkbeck, Valerie Bradley, Dr Femmianne Bredewold, Dr Masauso Chirwa, Dr Šárka Kanova, Prof Sudesh Mukhopadhyay, Dr Niki Nearchou, Dr Flavia Santos, Associate Professor Jan Šiška, Prof Jan Tossebro.
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.
Analysing key data, the project will identify, for the first time, the impact of a pandemic on the lives of people with IDD.
Without appropriate support, individuals with IDD may be unable to alert others to the onset of symptoms. They 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 in conjunction with the International Association for the Scientific Study of Intellectual and Developmental Disability’s (IASSIDD) Comparative Policy and Practice Special Interest Group (CPP), a global organisation of which a number of project partners are members. Through these networks, project partners will contact disability and advocacy organisations worldwide asking that they share the link to the online survey with their members. Caregivers, whether paid staff or family members, who are 18 years or over are encouraged to look out for further details on social media and to participate in the survey.
The analyses of these data will generate new insights into 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 such as WHO, the Fundamental Rights Agency and the European Association of Service Providers for Persons with Disabilities.
Dr Christine Linehan commented: "People with intellectual disabilities face specific disadvantage during the pandemic; symptoms may go unnoticed, treatment may be withheld, social distancing measures may result in behaviours that challenge. Our survey aims to capture people's experience so we can use findings to develop policy and practice guidelines for this population."