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COVID-19 health and social care access for autistic people: European policy review

BACKGROUND: The global COVID-19 pandemic has had an unprecedented impact on European health and social care systems, with demands on testing, hospital and intensive care capacity exceeding available resources in many regions. This has led to concerns that some vulnerable groups, including autistic p...

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Autores principales: Oakley, Bethany, Tillmann, Julian, Ruigrok, Amber, Baranger, Aurélie, Takow, Christian, Charman, Tony, Jones, Emily, Cusack, James, Doherty, Mary, Violland, Pierre, Wroczyńska, Agnieszka, Simonoff, Emily, Buitelaar, Jan K, Gallagher, Louise, Murphy, Declan G M
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BMJ Publishing Group 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8130751/
https://www.ncbi.nlm.nih.gov/pubmed/34001500
http://dx.doi.org/10.1136/bmjopen-2020-045341
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author Oakley, Bethany
Tillmann, Julian
Ruigrok, Amber
Baranger, Aurélie
Takow, Christian
Charman, Tony
Jones, Emily
Cusack, James
Doherty, Mary
Violland, Pierre
Wroczyńska, Agnieszka
Simonoff, Emily
Buitelaar, Jan K
Gallagher, Louise
Murphy, Declan G M
author_facet Oakley, Bethany
Tillmann, Julian
Ruigrok, Amber
Baranger, Aurélie
Takow, Christian
Charman, Tony
Jones, Emily
Cusack, James
Doherty, Mary
Violland, Pierre
Wroczyńska, Agnieszka
Simonoff, Emily
Buitelaar, Jan K
Gallagher, Louise
Murphy, Declan G M
author_sort Oakley, Bethany
collection PubMed
description BACKGROUND: The global COVID-19 pandemic has had an unprecedented impact on European health and social care systems, with demands on testing, hospital and intensive care capacity exceeding available resources in many regions. This has led to concerns that some vulnerable groups, including autistic people, may be excluded from services. METHODS: We reviewed policies from 15 European member states, published in March–July 2020, pertaining to (1) access to COVID-19 tests; (2) provisions for treatment, hospitalisation and intensive care units (ICUs); and (3) changes to standard health and social care. In parallel, we analysed survey data on the lived experiences of 1301 autistic people and caregivers. RESULTS: Autistic people experienced significant barriers when accessing COVID-19 services. First, despite being at elevated risk of severe illness due to co-occurring health conditions, there was a lack of accessibility of COVID-19 testing. Second, many COVID-19 outpatient and inpatient treatment services were reported to be inaccessible, predominantly resulting from individual differences in communication needs. Third, ICU triage protocols in many European countries (directly or indirectly) resulted in discriminatory exclusion from lifesaving treatments. Finally, interruptions to standard health and social care left over 70% of autistic people without everyday support. CONCLUSIONS: The COVID-19 pandemic has further exacerbated existing healthcare inequalities for autistic people, probably contributing to disproportionate increases in morbidity and mortality, mental health and behavioural difficulties, and reduced quality of life. An urgent need exists for policies and guidelines on accessibility of COVID-19 services to be updated to prevent the widespread exclusion of autistic people from services, which represents a violation of international human rights law.
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spelling pubmed-81307512021-05-24 COVID-19 health and social care access for autistic people: European policy review Oakley, Bethany Tillmann, Julian Ruigrok, Amber Baranger, Aurélie Takow, Christian Charman, Tony Jones, Emily Cusack, James Doherty, Mary Violland, Pierre Wroczyńska, Agnieszka Simonoff, Emily Buitelaar, Jan K Gallagher, Louise Murphy, Declan G M BMJ Open Health Services Research BACKGROUND: The global COVID-19 pandemic has had an unprecedented impact on European health and social care systems, with demands on testing, hospital and intensive care capacity exceeding available resources in many regions. This has led to concerns that some vulnerable groups, including autistic people, may be excluded from services. METHODS: We reviewed policies from 15 European member states, published in March–July 2020, pertaining to (1) access to COVID-19 tests; (2) provisions for treatment, hospitalisation and intensive care units (ICUs); and (3) changes to standard health and social care. In parallel, we analysed survey data on the lived experiences of 1301 autistic people and caregivers. RESULTS: Autistic people experienced significant barriers when accessing COVID-19 services. First, despite being at elevated risk of severe illness due to co-occurring health conditions, there was a lack of accessibility of COVID-19 testing. Second, many COVID-19 outpatient and inpatient treatment services were reported to be inaccessible, predominantly resulting from individual differences in communication needs. Third, ICU triage protocols in many European countries (directly or indirectly) resulted in discriminatory exclusion from lifesaving treatments. Finally, interruptions to standard health and social care left over 70% of autistic people without everyday support. CONCLUSIONS: The COVID-19 pandemic has further exacerbated existing healthcare inequalities for autistic people, probably contributing to disproportionate increases in morbidity and mortality, mental health and behavioural difficulties, and reduced quality of life. An urgent need exists for policies and guidelines on accessibility of COVID-19 services to be updated to prevent the widespread exclusion of autistic people from services, which represents a violation of international human rights law. BMJ Publishing Group 2021-05-17 /pmc/articles/PMC8130751/ /pubmed/34001500 http://dx.doi.org/10.1136/bmjopen-2020-045341 Text en © Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ. https://creativecommons.org/licenses/by-nc/4.0/This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/ (https://creativecommons.org/licenses/by-nc/4.0/) .
spellingShingle Health Services Research
Oakley, Bethany
Tillmann, Julian
Ruigrok, Amber
Baranger, Aurélie
Takow, Christian
Charman, Tony
Jones, Emily
Cusack, James
Doherty, Mary
Violland, Pierre
Wroczyńska, Agnieszka
Simonoff, Emily
Buitelaar, Jan K
Gallagher, Louise
Murphy, Declan G M
COVID-19 health and social care access for autistic people: European policy review
title COVID-19 health and social care access for autistic people: European policy review
title_full COVID-19 health and social care access for autistic people: European policy review
title_fullStr COVID-19 health and social care access for autistic people: European policy review
title_full_unstemmed COVID-19 health and social care access for autistic people: European policy review
title_short COVID-19 health and social care access for autistic people: European policy review
title_sort covid-19 health and social care access for autistic people: european policy review
topic Health Services Research
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8130751/
https://www.ncbi.nlm.nih.gov/pubmed/34001500
http://dx.doi.org/10.1136/bmjopen-2020-045341
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