Impact of Covid-19 on Individuals with Intellectual and Developmental Disabilities and Caregivers
13 May 2020
A global consortium aims to explore the experiences of individuals with intellectual and developmental disabilities (IDD) and their caregivers during the Covid 19 pandemic. The consortium is led by the UCD Centre for Disability Studies and includes 15 academics and practitioners in the disability field from nine countries, many of whom are member of the Comparative Policy and Practice Special Interest Group of IASSIDD (the International Association for the Scientific Study of Intellectual and Developmental Disabilities), the leading professional association for those working in the intellectual and developmental disability field.
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.
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. Without appropriate support, however, 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 consortium will develop an online anonymous survey and distribute it through disability and advocacy organisations. We are asking caregivers, who are 18 years and over, to check the social media of disability and advocacy organisations for news of the survey. We hope that caregivers in many countries throughout the world will take part in the study. The survey will ask questions about the identification of symptoms, access to treatment, access to equipment, and the impact of social distancing measures. We aim to compare the impact of the pandemic for people with IDD who live in segregated settings and in the community. We also wish to compare the impact for people with IDD living in different countries. No identifying information is gathered so no individual can be identified from this study. We will use our findings to draft policy and practice guidelines on how best to support people with IDD and their caregivers during a pandemic.
More information
https://www.ucd.ie/research/covid19response/news/hrbchristinelinehan/
Photography: Aad van Vliet
The University of Humanistic Studies takes part in an international study into the impact of Covid 19 on individuals with intellectual and developmental disabilities and caregivers.