Initiated by the former United Nations Special Rapporteur on the Rights of Persons with Disabilities, CPEC researchers were invited to explore the experiences of individuals of all ages living in institutional settings during COVID-19.
The researchers are calling for greater efforts to support individuals with disabilities and older people to live in community settings.
The COVID-19 pandemic is having severe impacts on millions of people living in institutional settings globally, including those with disabilities, children, and older people.
The pandemic has exacerbated many of the existing failings of these settings: restrictions on individuals’ rights, damage to their physical and mental health, shortened life-spans, and constraints on social and economic activity.
Residents in these settings were exposed to disproportionate risks of COVID infection, severe illness, and premature death. This was at least partially due to bans on visits by family and external health professionals.
The research has led to a call for a national and global commitment to deinstitutionalisation. This is the process of replacing institutions with community-based services to support individuals with disabilities and older persons to live independently in the community – and to respect their choices.
A key barrier to deinstitutionalisation is prejudice against those with disabilities and ageism, resulting in a lack of societal commitment to change the status quo.
Stigma, poor understanding of disabilities, and discrimination underpin many of the other barriers highlighted by the report. These include lack of support within families, resources being directed to institutional rather than community-based support, and laws in some countries restricting people’s rights.
The report sets out several recommendations to improve the lives of individuals with disabilities and age-related needs, including:
- Improve societal awareness of disabilities and tackle discrimination;
- Involve individuals with disabilities and older people in all discussions of policy change and practice development;
- Establish community-based care by developing high-quality services, support people to make informed choices about where they live, and help families to support their loved ones;
- Ensure that every child, whatever their disabilities or needs, lives in a family setting;
- Commit adequate funding to community-based support and transfer resources from institutions to community-based services;
- Ensure lessons are learnt from COVID-19 for future pandemics and commit enough resources to health and care systems that will protect persons with disabilities and older people;
- Improve legal and policy frameworks to incentivise community-based support;
- Recognise the need for long-term commitment.
Professor Gerald Quinn, United Nations Special Rapporteur on the Rights of Persons with Disabilities:
The lack of "home" damages children, persons with disabilities, older persons, and others. Because we take seriously the promise of independent living for persons with disabilities, we must take deinstitutionalisation seriously. The findings from this study are an important part of a deeper conversation on the need for, and the possibilities of, a new and wider policy imagination for all our citizens.
Professor Martin Knapp, from the Care Policy and Evaluation Centre at LSE, who led the research:
While the COVID-19 pandemic has had devastating impacts on the lives of many persons living in congregate settings, as well as on their families, the spotlight on care homes, long-stay hospitals, and other group living arrangements has highlighted the wider challenges of institutions.
We know that deinstitutionalisation leads to better quality of life of persons with disabilities and older persons. It is incomprehensible that despite this, millions of people still live in institutions that deny them their human rights and fundamental freedoms. The recommendations we have highlighted in our report provide a way forward.
Catalina Devandas Aguilar, former UN Special Rapporteur on the Rights of Persons with Disabilities and commissioner of the research:
I greatly welcome this report. It presents an opportunity for governments to use its findings and recommendations to transition to community-based services and to ensure that all persons with disabilities are able to choose where and how they live, with the support they need.
Knapp M, Cyhlarova E, Comas-Herrera A, Lorenz-Dant K (2021) Crystallising the Case for Deinstitutionalisation: COVID-19 and the Experiences of Persons with Disabilities, Care Policy and Evaluation Centre, London School of Economics and Political Science. (PDF)
Executive Summary: Easy Read (PDF)