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Ethics framework and recommendations to support capabilities of people with intellectual and developmental disabilities during pandemics

Sullivan, William F. ; Björne, Petra LU ; Heng, John and Northway, Ruth (2022) In Journal of Policy and Practice in Intellectual Disabilities 19(1). p.116-124
Abstract

A growing body of knowledge highlights the negative impact of the COVID-19 pandemic on the health and well-being of many people with intellectual and developmental disabilities (IDDs) and their caregivers. The underlying reasons are not only due to biomedical factors but also ethical issues. They stem from longstanding and pervasive structural injustices and negative social attitudes that continue to devalue people with IDD and that underlie certain clinical decisions and frameworks for public-health policies during this pandemic. Unless these fundamental ethical shortcomings are addressed, pandemic responses will continue to undermine the human rights and well-being of people with IDD. This paper proposes an ethics framing for policy... (More)

A growing body of knowledge highlights the negative impact of the COVID-19 pandemic on the health and well-being of many people with intellectual and developmental disabilities (IDDs) and their caregivers. The underlying reasons are not only due to biomedical factors but also ethical issues. They stem from longstanding and pervasive structural injustices and negative social attitudes that continue to devalue people with IDD and that underlie certain clinical decisions and frameworks for public-health policies during this pandemic. Unless these fundamental ethical shortcomings are addressed, pandemic responses will continue to undermine the human rights and well-being of people with IDD. This paper proposes an ethics framing for policy and practices regarding clinical care and public health based on Martha Nussbaum's approach to Capability Theory. Such a framework can reorient healthcare professionals and healthcare systems to support the capabilities of people with IDD to protect, recover, and promote health and well-being. It could be applied during this pandemic and in planning for future pandemics. The paper presents some practical recommendations that follow from applying this framework.

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author
; ; and
organization
publishing date
type
Contribution to journal
publication status
published
subject
keywords
COVID-19, ethics, health equity, health policy, intellectual disability
in
Journal of Policy and Practice in Intellectual Disabilities
volume
19
issue
1
pages
9 pages
publisher
Wiley-Blackwell
external identifiers
  • scopus:85125902187
  • pmid:35601010
ISSN
1741-1122
DOI
10.1111/jppi.12413
language
English
LU publication?
yes
id
237c2475-ad88-4fed-b0a2-5dd5871fd599
date added to LUP
2022-04-22 16:07:15
date last changed
2024-06-20 19:04:14
@article{237c2475-ad88-4fed-b0a2-5dd5871fd599,
  abstract     = {{<p>A growing body of knowledge highlights the negative impact of the COVID-19 pandemic on the health and well-being of many people with intellectual and developmental disabilities (IDDs) and their caregivers. The underlying reasons are not only due to biomedical factors but also ethical issues. They stem from longstanding and pervasive structural injustices and negative social attitudes that continue to devalue people with IDD and that underlie certain clinical decisions and frameworks for public-health policies during this pandemic. Unless these fundamental ethical shortcomings are addressed, pandemic responses will continue to undermine the human rights and well-being of people with IDD. This paper proposes an ethics framing for policy and practices regarding clinical care and public health based on Martha Nussbaum's approach to Capability Theory. Such a framework can reorient healthcare professionals and healthcare systems to support the capabilities of people with IDD to protect, recover, and promote health and well-being. It could be applied during this pandemic and in planning for future pandemics. The paper presents some practical recommendations that follow from applying this framework.</p>}},
  author       = {{Sullivan, William F. and Björne, Petra and Heng, John and Northway, Ruth}},
  issn         = {{1741-1122}},
  keywords     = {{COVID-19; ethics; health equity; health policy; intellectual disability}},
  language     = {{eng}},
  number       = {{1}},
  pages        = {{116--124}},
  publisher    = {{Wiley-Blackwell}},
  series       = {{Journal of Policy and Practice in Intellectual Disabilities}},
  title        = {{Ethics framework and recommendations to support capabilities of people with intellectual and developmental disabilities during pandemics}},
  url          = {{http://dx.doi.org/10.1111/jppi.12413}},
  doi          = {{10.1111/jppi.12413}},
  volume       = {{19}},
  year         = {{2022}},
}