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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