Abstract
Coronavirus disease 2019 (COVID-19) has negatively affected the lives of people with disabilities; therefore, they need fast vaccination allocation. However, many countries, especially the Republic of Korea, have hesitated to vaccinate people with disabilities. This opinion article will explain why vaccine allocation priority is required for autistic people and people with disabilities in the COVID-19 pandemic crisis, including reporting on self-quarantine's stresses and psychological burdens.
Coronavirus disease 2019 (COVID-19) has affected lives worldwide, including people with disabilities. During 2020, half of the countries enforced lockdowns that required people to stay in their home or institution, withdrawn from freedom of action and communication with others. Also, autistic people worldwide, including unregistered or self-diagnosed autistics,1 suffer more because they and their parents feel a lack of support from communities and the government,2 and isolation from social interactions.3
Fortunately, the Republic of Korea has succeeded in protecting citizens from severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infections thanks to the social distancing policy led by the Korea Disease Control and Prevention Agency (KDCA). However, during the recent fourth wave,4 the surge of confirmed cases of the delta variant threatens many people with disabilities, especially autistics. Because they are ‘left behind’5 from vaccination against COVID-19, they are experiencing a near-lockdown experience again.
Also, the Korean Government does not have accommodations for autistics and people with disabilities with all processes related to COVID-19, including self-isolation, living in residential treatment centres or hospitals, PCR tests, and vaccination. It is different from measures of the UK government, which emphasised the autistic-friendly vaccine uptake methodology, including easy-to-read information6 and allowing the removal of masks for autistics in social settings.7
On January 28, 2021, KDCA announced the first ‘vaccination plan.’8 The program categorised Koreans into three groups: Group A aims to prevent severe COVID-19 infections and death. Group B aims to protect workers in essential services. Group C aims to prevent transmission in the community.9 Then, the groups were divided into three quarters again.810 In this process, KDCA prioritised people with disabilities in psychiatric wards (Group C, first quarter) and facilities (Second quarter) because ‘they are weak to the virus, and the fatality is high.’11 Furthermore, all people with disabilities living in the community were allocated in the last quarter; treated as the same as people without disabilities.
From then, disability-related organisations and some politicians requested the Korean government to prioritise people with disabilities, especially ‘people with Developmental Disabilities,’ including autistics.12 Nevertheless, on June 17, 2021, KDCA finally decided not to change the overall vaccination priority.11 It is not astonishing that the decision repeats the American CDC’s conclusion, which has neglected people's requests for disabilities in America.13 Fortunately, KDCA decided to vaccinate registered people with development disabilities before the last most oversized vaccination lot starting in August but rejected to prioritise other registered and unregistered people with disabilities.
However, there are reasonable reasons why these decisions are not helpful for people with disabilities, especially autistics, people with intellectual disabilities, and other people with psychological disabilities.
First, people with disabilities, especially people with psychological disabilities, are at-risk for SARS-CoV-2. During the first wave of COVID-19 in the Republic of Korea, people with disabilities showed a meaningfully higher COVID-19 prevalence (< 0.001) than others.14 Also, according to the survey by National Rehabilitation Center, more people with disabilities (6.2%) have experienced self-isolation than others (5.4%), which implies they are vulnerable and have more chances to contract SARS-CoV-2.15
Recent research indicates that autistics in the USA16 and people with learning disabilities in the United Kingdom17 have a higher prevalence and mortality from SARS-CoV-2. Moreover, Hotez et al.18 suggested that ‘people with developmental disabilities,’ including autistics, have vulnerability and high fatality from SARS-CoV-2 because of their susceptibility to the virus. Lima et al.19 also suggested that autistics could have increased immune response to the virus, such as ‘cytokine storm.’
Next, social distancing and health policies made ‘people with developmental disabilities’ in near-lockdown experience, negatively impacting in quality of life of autistics, people with intellectual disabilities,20 and their families. After the start of COVID-19, when the social distancing levels were highest, their visiting places (including schools, community welfare centres and workplaces) were closed or transited online, which was unfamiliar to them. Therefore, most Korean autistics are stuck at home with parents rather than going outside; to avoid affection with the virus. From mid-2020, KDCA and the Ministry of Health and Welfare stressed the ‘mind quarantine,’ which enhances counselling for all Korean people, but their efforts have not reached Korean autistics, Korean people with disabilities or their parents.
Therefore, most autistics and other people with disabilities decided to cease any outside activities15 because they are afraid of infection risk, as an autistic child in Japan had shown,21 and social discrimination caused by invisible disabilities, including autistic traits.22 Also, many autistics struggle with wearing face coverings2223 because of their low tactile sensory thresholds,24 which experts are trying interventions for wearing.25 Moreover, autistics find it hard to maintain social distancing policies18 and have suffered from society's isolation. Therefore, they suffer from low quality of life and state of mind during the COVID-19 pandemic.26
In recent research by Ulsan Centre for Developmental Disabilities, 87.6% of ‘people with disabilities’ (n = 766) have reported the effect on their everyday lives because their health worsened.27 Respondents also said they are feeling frustration (n = 434), anger (n = 269), incompetence (n = 174) and nervousness (n = 155) after COVID-19 started.27 Especially, autistics are more impacted by ‘voluntary’ self-isolation and showing more negative emotional behaviours. For example, in the survey, parents of autistic and autistic-intellectual people reported an increase in stimming, self-injury, violence, impulsive, nervous, and binge eating behaviours.527
Furthermore, the parents' deep parenting burden for people with ‘Developmental Disabilities,’ created by the Double Empathy Problem between autistics and neurotypicals,2829 affects the quality of the lives of people with disabilities15 and makes parents' lives harder. For example, after COVID-19 started, several parents with autistics in Korea committed suicide because of the severe psychological pressure of caring for their children.530
Third, according to their living status, the discrimination of people with disabilities is discriminative and a violation of international laws. UN Convention on the Rights of Persons with Disabilities (CRPD), Article 19(b), obliged state parties not to make people with disabilities live in a ‘particular living arrangement.’31 However, the Korean government excluded the people with disabilities in the community from vaccination priority by prioritising people with disabilities locked in the ‘congregated or overcrowded setting’9: psychic wards and institutions that article 19 prohibits. It seemed inevitable to the KDCA and health professionals when they thought of the mass infection in Cheongdo. However, the decision showed a clear signal: the Korean government keep people with disabilities into institutions before releasing them into a safer environment.
Moreover, CRPD article 25 requires state parties to ‘Provide those health services needed by persons with disabilities’ (b) and ‘prevent discriminatory denial of health care or health services’ (f), which applies in the COVID-19 vaccination.31 However, as the former minister Park Neung-hoo insisted, “the making people with disabilities as the category of vulnerable [to the COVID] are discriminative,” 30 the Korean government does not regard the existing health inequity of Korean people with disabilities.32
So, what would change if all people with disabilities received vaccines in the early stage? Many people with disabilities, especially autistics, could quickly normalise their lives, keeping their routine or outside activities, and receive essential health services. Also, the stress and psychological burden on families would reduce. Schools and hospitals also could provide services, which is not entirely possible via remote communication. Therefore, the satisfaction and the quality of life of people with disabilities would improve.
Most of all, vaccination for people with disabilities would help them maintain or seek new employment. The employment rate of Korean people with disabilities in 2020 was 48.0%, which lowered by 2.0% in a year. Moreover, the rate of Korean autistics in 2020 was 23.2%, lowered by 3.8%.33 Therefore, if vaccinations are early, people with disabilities and autistics could get a decent job and earn money to live in a pandemic crisis and integrate into society.
Now we should admit the truth: Many governments, which include the Korean government, have left behind people with disabilities, especially autistics, during the COVID-19 pandemic. The current status is quite different from the address of President Moon Jae-in, which argued that “Made a principle … leave no vulnerable persons behind.”34 We cannot change the current result on people with disabilities: the late vaccination and ignore of high demand. However, the constant and systemic exclusion of disabilities from pandemic policies and strategies should not repeat.
Therefore, the following implications throughout this article are still valid. First, governments should prioritise autistics and people with psychological disabilities as a vaccination priority as soon as possible and consider people with disabilities for all pandemic policies like self-quarantine.26 Second, countries may make channels that give all people with disabilities, including autistic and neurodivergent people, access regular or on-demand psychological services regardless of the enrolment. At last, governments may fund all people with disabilities based on the social model of disability and give them enough high education and decent jobs to get out of the crisis that autistics and other people with disabilities face every day.
References
1. Sarrett JC. Biocertification and neurodiversity: the role and implications of self-diagnosis in autistic communities. Neuroethics. 2016; 9(1):23–36.
2. Oakley B, Tillmann J, Ruigrok A, Baranger A, Takow C, Charman T, et al. COVID-19 health and social care access for autistic people: European policy review. BMJ Open. 2021; 11(6):e045341.
3. Simmons AL. COVID-19 social distancing: a snippet view of the autistic social world. Disabil Soc. 2020; 35(6):1007–1011.
4. Kim A. Korea officially in COVID-19 fourth wave. The Korea Herald;2021. 7. 07. Updated 2021. Accessed July 20, 2021. http://www.koreaherald.com/view.php?ud=20210707000868.
5. Lee H. Disabled people left behind in government's COVID-19 support measures. The Korea Herald;2021. 4. 22. Updated 2021. Accessed July 21, 2021. https://www.koreatimes.co.kr/www/nation/2021/04/119_307586.html.
6. UK Department of Health & Social Care. UK COVID-19 vaccine uptake plan. 2021. 2. 13. Updated 2021. Accessed February 15, 2021. https://www.gov.uk/government/publications/covid-19-vaccination-uptake-plan/uk-covid-19-vaccine-uptake-plan.
7. Cabinet Office. Disabled people exempt from wearing face coverings under new government guidance, . gov.UK;2020. 7. 14. Updated 2020. Accessed July 29, 2021. https://www.gov.uk/government/news/disabled-people-exempt-from-wearing-face-coverings-under-new-government-guidance.
8. Ministries of Korea. COVID-19 vaccination plan for ‘daily life recovery,’. 2021. 1. 28. Updated 2021. Accessed February 15, 2021. http://www.kdca.go.kr/filepath/boardDownload.es?bid=0015&list_no=711941&seq=3.
9. Choi MJ, Choi WS, Seong H, Choi JY, Kim JH, Kim YJ, et al. Developing a framework for pandemic COVID-19 vaccine allocation: a modified Delphi consensus study in Korea. J Korean Med Sci. 2021; 36(23):e166. PMID: 34128597.
10. Jung J. Preparing for the coronavirus disease (COVID-19) vaccination: evidence, plans, and implications. J Korean Med Sci. 2021; 36(7):e59. PMID: 33619920.
11. Korea Disease Control and Prevention Agency. COVID-19 prevention vaccination implement plan in 3rd quarter. 2021. 6. 17. Updated 2021. Accessed July 21, 2021. http://www.kdca.go.kr/filepath/boardDownload.es?bid=0015&list_no=713689&seq=2.
12. Korea Federation of Organization of the Disabled. The vaccination plan for priority on to people with disabilities, and workers in the disability organisation, which is vulnerable to COVID-19 are still lacking. 2021. 5. 03. Updated 2021. Accessed July 21, 2021. http://www.kofod.or.kr/bbs/sub2_2/89984.
13. Contrera J. People with Disabilities desperately need the vaccine. But states disagree on when they'll get it. The Washington Post;2021. 1. 13. Updated 2021. Accessed July 21, 2021. https://www.washingtonpost.com/dc-md-va/2021/01/13/disabled-coronavirus-vaccine-states/.
14. Choi JW, Han E, Lee SG, Shin J, Kim TH. Risk of COVID-19 and major adverse clinical outcomes among people with disabilities in South Korea. Disabil Health J. 2021; 14(4):101127. PMID: 34134944.
15. National Rehabilitation Center. The research result of “experiences and problems of people with disabilities on COVID-19” (published by Ministry of Health and Welfare, June 24, 2021). Updated 2021. Accessed July 21, 2021. http://www.mohw.go.kr/react/al/sal0301vw.jsp?PAR_MENU_ID=04&MENU_ID=0403&page=1&CONT_SEQ=366181.
16. Karpur A, Vasudevan V, Shih A, Frazier T. Brief report: impact of COVID-19 in individuals with autism spectrum disorders: analysis of a National Private Claims Insurance database. J Autism Dev Disord. Forthcoming. 2021.
17. Courtenay K, Cooper V. Covid 19: people with learning disabilities are highly vulnerable. BMJ. 2021; 374:n1701. PMID: 34261641.
18. Hotez E, Hotez PJ, Rosenau KA, Kuo AA. Prioritising COVID-19 vaccinations for individuals with intellectual and developmental disabilities. EClinicalMedicine. 2021; 32:100749. PMID: 33585807.
19. Lima ME, Barros LC, Aragão GF. Could autism spectrum disorders be a risk factor for COVID-19? Med Hypotheses. 2020; 144:109899. PMID: 32505067.
20. Kim MA, Yi J, Sung J, Hwang S, Howey W, Jung SM. Changes in life experiences of adults with intellectual disabilities in the COVID-19 pandemics in South Korea. Disabil Health J. Forthcoming. 2021.
21. Sakamoto S, Miyawaki D, Goto A, Harima Y, Tokuhara D, Inoue K. COVID-19 phobia in a boy with undiagnosed autism spectrum disorder: a case report. Medicine (Baltimore). 2021; 100(22):e26233. PMID: 34087907.
22. Grant K. Who's exempt from wearing masks?: ‘I'm scared of abuse for not wearing one.’. BBC Newsbeat;2021. 1. 18. Updated 2021. Accessed July 29. 2021. https://www.bbc.com/news/newsbeat-55639186.
23. Narzisi A. Handle the autism spectrum condition during coronavirus (COVID-19) stay at home period: ten tips for helping parents and caregivers of young children. Brain Sci. 2020; 10(4):207.
24. Thom R, Turner K. Helping people with autism spectrum disorder manage masks and COVID-19 tests. Harvard Health Publishing;2020. 10. 20. Updated 2020. Accessed July 27, 2021. https://www.health.harvard.edu/blog/helping-people-with-autism-spectrum-disorder-manage-masks-and-covid-19-tests-2020061020089.
25. Aaronson B, Glick SN, Kirk CJ, McCloud WA 4th, Sasser TR, Zerr DM, et al. Assessment of feasibility of face covering in school-aged children with autism spectrum disorders and attention-deficit/hyperactivity disorder. JAMA Netw Open. 2021; 4(5):e2110281. PMID: 33999167.
26. Sarah AC, Nicolaidis C, Davies B, Des Roches Rosa S, Eisenman D, Onaiwu MG, et al. An expert discussion on autism in the COVID-19 pandemic. Autism in Adulthood. 2020; 2(2):106–117.
27. Cho H, Kim M, Choi M, Cheong Y. The living conditions and service needs from people with developmental disabilities during the COVID-19 pandemic (Ulsan Center for Developmental Disabilities). Updated 2020. Accessed July 27, 2021. https://www.koddi.or.kr/data/research01_view.jsp?brdNum=7410068.
28. Crompton CJ, DeBrabander K, Heasman B, Milton D, Sasson NJ. Double empathy: why autistic people are often misunderstood. Front Young Minds. 2021; 9:554875.
29. Milton DE. On the ontological status of autism: the ‘double empathy problem’. Disabil Soc. 2012; 27(6):883–887.
30. Ser MJ. People with Disabilities left behind by Korea's Covid response. Korean Joongang Daily;2020. 11. 23. Updated 2020. Accessed July 27, 2021. https://koreajoongangdaily.joins.com/2020/11/23/national/socialAffairs/Covie19-disablities-Korean-Parents-Network-for-People-with-Disabilities/20201123161900437.html.
31. United Nations. Convention on the rights of persons with disabilities – articles. Updated 2021. Accessed July 29, 2021. https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities/convention-on-the-rights-of-persons-with-disabilities-2.html.
32. Lee SB, Kim JB. A country report: impact of COVID-19 and inequity of health on South Korea's disabled community during a pandemic. Disabil Soc. 2020; 35(9):1514–1519.
33. Kim H, Cho G, Park H, Im Y, Bae S, Jeon Y, et al. An Research on the Economy of People with Disabilities 2020. Seongnam, Korea: Korea Employment Agency for Persons with Disabilities;2020. https://www.kead.or.kr/common/comm_board_v.jsp?no=425&gotopage=1&search=4&keyword=&data_gb=007&branch_gb=B01&station_gb=000&main=4&sub1=4&sub2=0&sub3=0&option=.
34. Office of President. Special address by president Moon Jae-in at Davos Agenda 2021 (January 27, 2021). Updated 2021. Accessed February 15, 2021. https://english1.president.go.kr/BriefingSpeeches/Speeches/936.