TY - JOUR
T1 - COVID-19 health and social care access for autistic people: European policy review
AU - Oakley, Beth
AU - Tillmann, Julian
AU - Ruigrok, Amber
AU - Baranger, Aurélie
AU - Takow, Christian
AU - Charman, Tony
AU - Jones, Emily
AU - Cusack, James
AU - Doherty, Mary
AU - Violland, Pierre
AU - Wroczyńska, Agnieszka
AU - Simonoff, Emily
AU - Buitelaar, Jan K.
AU - Gallagher, Louise
AU - Murphy, Declan
N1 - Funding Information:
Funding This project was supported by the Innovative Medicines Initiative 2 Joint Undertaking under grant agreement No 777394. This Joint Undertaking receives support from the European Union’s Horizon 2020 research and innovation programme and EFPIA and SFARI, Autistica, AUTISM SPEAKS. The views expressed are those of the author(s) and not necessarily those of the IMI 2JU.
Funding Information:
Survey items requested from Autism-Europe for the purpose of this review are documented in online supplemental table 3. The survey was disseminated publicly online between 7 April and 31 May 2020, in 10 languages, with participants recruited via Autism-Europe, UK autism charities and social media. Administration of the survey was conducted under the ‘Rights, Equality and Citizenship programme 2014–2020’, funded by the European Commission. Respondents were notified of the Autism-Europe GDPR policy that responses would be used for the development of policy recommendations, and gave written permission for the publication of their anonymised quotations, which were included for illustrative purposes.
Publisher Copyright:
© 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.
PY - 2021/5/17
Y1 - 2021/5/17
N2 - 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.
AB - 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.
UR - http://www.scopus.com/inward/record.url?scp=85106188932&partnerID=8YFLogxK
U2 - 10.1136/bmjopen-2020-045341
DO - 10.1136/bmjopen-2020-045341
M3 - Article
SN - 2044-6055
VL - 11
JO - BMJ Open
JF - BMJ Open
IS - 6
M1 - e045341
ER -
