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Crystalizing the Case for Deinstitutionalization: Covid 19 and the Experiences of Persons with Disabilities

Crystalizing the Case for Deinstitutionalization: Covid 19 and the Experiences of Persons with Disabilities[i]

From the London School of Economics and Political Science, UK (LSE)

May 2021

Martin Knapp, Eva Cyhlarova, Adelina Comas-Herrera, Klara Lorenz-Dant

 

FORWARD

Professor Gerard Quinn

United Nations Special Rapporteur on the Rights of Persons with Disabilities

Chair, Leeds University Centre for Disability Studies, UK

Affiliated Chair, Raoul Wallenberg Institute, University of Lund, Sweden

 

This Report is about home. It is as simple – and as powerful – as that.

Home is where we form our sense of self – the very stuff of our identity. We do so in close association with others. Home is also the material expression of self – a sort of scaffolding that holds us together. In our homes we see ourselves reflected back – even in the small things like a flower vase or a family picture. It is quintessentially private. And yet home is also public. Our front doors beckon others in. Outside, we engage with the community – neighbours, shopkeepers, bus drivers. They are part of who we are. Living life my way and in the community is the very essence of independent living. And home is a crucial enabler for this to happen.

And home is exactly what is denied to large segments of the population.

Quite rightly, the authors of this Report take an intersectional view. The lack of ‘home’ damages children, persons with disabilities, older persons and others.

Institutionalisation represents an extreme form of segregation – so extreme that it self-evidently amounts to unconscionable discrimination. Even if Article 19 of the UN convention on the rights of persons didn’t exist (right to live independently and be included in the community) it would have to  be inferred from the prohibition on discrimination and extreme segregation.

The COVID-19 Pandemic has exponentially exposed the structural failures of our policy responses. The disproportionate levels of infections and deaths among persons living in institutions raised alarms all around the world from the early stages of the health crisis. We commissioned this report from London School of Economics (LSE) to bring together up-to-date information on the adverse consequences

Yet entire systems have somehow rationalised institutionalization as an appropriate response to human difference,     as cost effective and as an efficient way of  delivering care and services. It is none of the above. This Report helps to counteract these false narratives.

Humanity is at an inflection point. Because we take seriously the promise of independent living for persons with disabilities we must take deinstitutionalisation seriously. Because we take intersectionality seriously we have to explore why institutional options still remain for children and older persons and to find way to change the narrative and our expectations. This Report continues the conversation and keeps it moving in the right direction. It contains a clear set of Conclusions and Recommendations that, if followed, would help steer systems away from congregated options and toward more community-based solutions. Maybe in time we will see this digression toward institutions as a historical accident – something rooted in an outdated conception of welfare dating back to the mid-20th century. The 21st century points in a radically different direction. This Report gives courage to those who seek change. It is 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.

INTRODUCTION

Millions of persons with disabilities, children and older persons live in congregate settings. Whilst the motivation for providing such care may be well-intentioned, that is not always the case. Many of those settings are ‘institutional’, with residents denied autonomy and choice, provided with poor quality health and social care, and experiencing social isolation, neglect or abuse. The COVID-19 pandemic has highlighted many of those failings, whilst at the same time exposing residents to disproportionate risks of infection, severe illness and premature death.

We were invited by the former United Nations Special Rapporteur on the Rights of Persons with Disabilities, Catalina Devandas, to conduct research to address the following four questions:

  • What is the situation today in relation to institutionalisation of persons with disabilities and older persons?
  • What has been the impact of COVID-19 on institutional care? How have governments responded?
  • What are the arguments for deinstitutionalisation?
  • What policy and other measures can be and are being taken to shift the balance of support from institutional care to community-based service?

 

[i] See the full London School of Economics report here: https://www.lse.ac.uk/cpec/assets/documents/CPEC-Covid-Desinstitutionalisation.pdf