The Irish Longitudinal Study on Ageing (IDS-TILDA) has been studying ageing in people with intellectual disability (ID) for over a decade. Now in its fourth wave, a number of its research activities had to be paused due to the COVID-19 pandemic and associated lockdown. However, the IDS-TILDA team has taken the opportunity to study the impact of COVID-19 on participants in this longitudinal study. To mark the release of the report of the findings of this research, an online launch was held on 3rd December 2020, International Day of Disabled Persons.
Attendees were welcomed by Professor Mary McCarron, Principal Investigator of IDS-TILDA. Minister Anne Rabbitte, TD, Minister of State with Responsibility for Disability, gave a speech highlighting the context and main findings of the study, and praising the work of the IDS-TILDA team, those people with ID who have taken part in the study, and those who have supported them during this pandemic. Minister Rabbitte acknowledged that the pandemic and associated lockdown have been difficult for all of us, but it has often been even more challenging for people with ID, who can be more vulnerable, and often have less autonomy than the general population.
Professor McCarron then presented key findings from the COVID-19 survey. The COVID-19 survey had a response rate of 96% from the IDS-TILDA cohort, meaning this survey was representative of the population with ID in Ireland. A majority of participants were tested for COVID-19, with many being tested multiple times. Of those who did test positive or had symptoms, a clear majority had a plan in place to manage self-isolation. Key sources of stress and anxiety were being unable to do one’s usual activities, not seeing friends/family, loneliness and isolation. At the same time, many participants reported there had been some positive aspects to the lockdown, such as trying new activities or using technology to communicate with relatives and friends. Most importantly, there were no reported deaths due to COVID-19 in the IDS-TILDA population.
Following this summary of the results, broadcaster Olivia O’Leary led a panel discussion with a variety of stakeholders, exploring different perspectives on the pandemic and lockdown. Participants on the panel highlighting how best practice was implemented for people with ID in Ireland included Professor Sean Kennelly (Consultant Physician in Geriatric and Stroke Medicine, Tallaght University Hospital), Dr Alison Hartnett (Acting CEO, National Federation of Voluntary Service Providers), Dr Kathleen MacLellan (Assistant Secretary, Social Care Division, Department of Health), and Lisa Lavelle (Director of Nursing, Daughters of Charity Disability Support Service). From an international perspective, Professor Chris Hatton (Manchester Metropolitan University) praised the work of services in Ireland in protecting people with ID, and the research of IDS-TILDA, saying he hoped similar research (conducted at a more localised level) in the UK would be published soon. Professor Philip McCallion, Co-Investigator of IDS-TILDA, highlighted the heterogeneity of experiences across the United States, given the size of the country, but drew particular attention to the deep impact of COVID-19 in the North-East of the USA, where he works at Temple University, Pennsylvania. Mei Lin Yap, a PPI contributor and steering committee member with IDS-TILDA, spoke of her lived experience of the lockdown, and of the importance of social contacts during the lockdown.
Following final comments from Professor McCarron, the launch closed with the original song “We’re in this together” by Sunbeam House Services. The song and its accompanying video, made by the service users, was a great way to finish the launch and underscore the importance of solidarity with each other at this time.
You can download the report at this link.
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