Public Seminar – “Accommodating the Needs of Persons with Disabilities in Policies Concerning Public Health Emergencies: Law, Ethics and Practice”
Dr. Pok Yin Stephenson CHOW (Principle Investigator; Assistant Professor, School of Law, City University of Hong Kong; Public Law and Human Rights Forum Core Member) and Dr. Po Yee Becky LEUNG (Post-doctoral Fellow, School of Law, City University of Hong Kong) hosted the research seminar online via Zoom on 10 March 2022. The seminar was conducted in Cantonese with simultaneous sign language interpretation. In the seminar, Dr. Pok Yin Stephenson CHOW and Dr. Po Yee Becky LEUNG explained the implications of addressing the needs of persons with disabilities in public health emergencies from the perspectives of law, ethics and practice. Dr. Oi Wah Esther CHOW (Associate Professor at the Department of Social and Behavioural Sciences, City University of Hong Kong), Prof. Wachara RIEWPAIBOON (Dean of Ratchasuda College, Mahidol University) and Mr. Oh-yong KWEON (Secretary General and Founder of the Korean Alliance for Mobilizing Inclusion) are co-investigators of the project.
First row- Dr. Pok Yin Stephenson CHOW, Dr. Po Yee Becky LEUNG;
Second row- sign language interpreters
Dr. Pok Yin Stephenson CHOW observed that the COVID-19 pandemic has gravely affected both mental and physical health of persons with disabilities, as many medical, rehabilitative and supporting services have been suspended. The situation has also brought extra burdens to caregivers. However, most governments around the world have failed to take into account the needs of persons with disabilities when implementing disease prevention measures.
The aim of the project is to develop an empirically informed and theoretically supported policy framework for the Hong Kong government to accommodate the needs of persons with disabilities in public health emergencies. The project explored four research questions: (1) What are the experiences of persons with disabilities in the COVID-19 pandemic and what are the challenges that they faced? (2) What measures have other Asian countries and regions taken to address their needs as well as to safeguard the rights of persons with disabilities and their carers in public health emergencies? (3) What are the ethical issues that arose during the COVID-19 pandemic? And (4) What are the legal and ethical obligations that governments must take up to protect in persons with disabilities in public health emergencies?
Dr. Po Yee Becky LEUNG explained the findings of part one of the research where focus group interviews were held with 74 participants to understand their needs and challenges during the pandemic. She pointed out that persons with mobility disabilities have experienced significant setbacks in their rehabilitation and recovery progress due to the postponement of treatments and the cancellation of rehabilitative services. On the other hand, the suspension of welfare services has adversely impacted the psychological well-being of persons with disabilities as they could not maintain their daily routine. It has also been difficult for them to understand public health information and pandemic-related contingency measures, as these instructions issued by the government did not come in accessible formats such as audio descriptions or easy read versions. The information was not disseminated in a way that caters to their needs. The shortage of sign language interpretations service left persons with disabilities with no choice but to ask their family members to accompany them. Many often, persons with disabilities found that their family member often made medical decisions on their behalf. They felt like their self-determination was not respected.
Dr. Pok Yin Stephenson CHOW found that most countries and regions compared - including Mainland China, Taiwan, Japan, Korea, Singapore, and Thailand - do not have any protective regulations or guidelines prior to public health emergencies that address the needs of persons with disabilities during these emergencies. In this context, he observed that the effectiveness of these countries and regions in providing support to persons with disabilities in public health emergencies largely depends on how robust policies are in supporting their needs at times of non-emergency. For example, Taiwan has been collecting comprehensive data on the service, medical and communication needs of persons with disabilities which allowed their government to act promptly and provide corresponding supports to these individuals in the present public health crisis. In Thailand, the National Committee for the Empowerment of Persons with Disabilities – a committee consisting of persons with disabilities, Senators and cabinet members, and presided by the Thai Prime Minister – was established in 2007 to devise and promulgate policies on persons with disabilities. The establishment of such a policy-making platform specifically on matters concerning persons with disabilities at times of non-emergency helped ensure that the needs of persons with disabilities are not forgotten in emergency management.
Public health emergencies also pose ethical challenges to societies. For instance, in some countries, medical bias exists and deeming persons with disabilities to have a lower chance of recovery, to justify prioritizing medical treatment and life-sustaining equipment for others. This infringes upon the right of persons with disabilities to have equal access to medical treatment. In other places, stereotypes portray persons with disabilities as less capable of protecting themselves in a pandemic and thus a higher chance of infection. Persons with disabilities were denied all kind of services as a result of discrimination. Dr. Pok Yin Stephenson CHOW also explained the necessary ingredients to devising inclusive emergency management plans and policies with reference to international law and good practices, which include the elements of accessibility, participation, non-discrimination, inclusive policymaking and data-collection, inclusive response, cooperation and coordination.
The project concludes with recommending an inclusive policy framework for the Hong Kong government in a public health emergency. This policy framework begins with three normative duties, namely, the duty to protect, the duty to plan and the duty to lead. The duty to protect includes the duty to protect the physical and psychological well-being of persons with disabilities as well as their rights. The duty to plan refers to the duty to plan in advance in order to mitigate the risks of potential health hazards that may have an impact on the health and psychological well-being of persons with disabilities and increasing the capacity of the government to respond. The duty to lead involves the duty on the part of the government, as a leader, to provide suitable and appropriate guidance for persons with disabilities, demonstrate moral leadership, and promote the spirit of mutual-help. Deriving from these three normative duties, the research team introduced 22 recommendations under the proposed framework for the government to adopt, including for example, to establish a centralised registration system for persons with disabilities for data collection in order to strengthen the capacity of the government and private actors to respond to potential public health hazards and crises. The team also recommended that a disability public health emergency response centre run and supported by persons with disabilities be set up, to assist the government in disseminating accessible information and resources, as well as offer them specific whenever help is needed. On the other hand, the government is obligated to promote trust in the community and ensure transparency and accountability in their policies.
The research team thanked the Policy Innovation and Co-ordination Office of the Hong Kong SAR Government for providing funding support. They expressed gratitude to the organizations that assisted them in conducting the research in the past 14 months, which include: Chosen Power, Hong Kong Blind Union, Baptist Oi Kwan Social Service, SLCO Community Resources, The Hong Kong Society for Rehabilitation, Association of Women with Disabilities Hong Kong and 彩牛居民力量 etc. The team highlighted that a lot of participants whom they interviewed before joined the seminar, and they once again thank the participants for their valuable contributions to the project.
The research team created a dissemination webpage for their research outputs and they welcome anyone interested to download the full research report at https://www.persons-with-disabilities-in-public-health-emergencies.com/. Various versions of the research report in accessible formats - such as an audio version of the executive summary and easy read version of the research report – are also available for download and access. To receive the latest updates on the project, please like and follow the project’s Facebook page https://www.facebook.com/pwdnpublichealthemergencies
周博研博士（項目首席研究員，香港城市大學法律學院助理教授，公法與人權論壇核心成員）與梁寶怡博士（香港城市大學法律學院博士後研究員）於2022年3月10日Zoom線上舉行了此項目的研究結果分享會。為方便受眾，分享會以廣東話配以手語翻譯進行。此項目的其他共同研究員有：周愛華博士（香港城市大學社會及行為科學系副教授），Wachara Riewpaiboon教授（泰國瑪希頓大學Ratchasuda College 院長）及Oh-yong Kweon 先生 (韓國Korean Alliance for Mobilizing Inclusion 秘書長及創辦人)。
周博研博士表示新冠肺炎疫情嚴重影響受障者的復康進程以及身心健康，亦令照顧者的壓力增加。他認為政府在防疫政策上未能考慮受障者的需要，故希望能藉此研究為政府提供政策框架作規劃之用。是次研究分享會由四部份組成：一、受障者在今次的公共衛生危機中面對什麼挑戰和經歷？ 二、 其他地區和國家實施了什麼政策，在公共衛生危機中保障受障者及照顧者的權利和需要? 三、 公共衛生危機帶出什麼道德倫理問題？ 最後，政府在公共衛生危機中需承擔什麼法律和道德上的責任?
梁寶怡博士講述研究團隊採了焦點小組訪談的方式與七十四位受訪者進行交流，以更深入瞭解不同障別人士在疫情中的真實經歷。研究指出，由於面向受障者的醫療支援減少及推遲，肢體受障者或罕見病患者在疫情中經歷身體機能退化的問題。社區中心減少對外開放亦令受障者無法與同路人或支援組織交流，影響心理健康。此外，政府防疫資訊及醫療資訊欠缺口述影像、 替代文字或簡易圖文版本， 受障者難以得知個人防疫資訊。由於疫情期間手語翻譯員短缺，受障者在多數時間皆是由親友陪伴到醫院，他們在接收醫療意見上有困難， 最後大都未能依他們自己意願做醫療決定，影響自決。
周博研博士表示各個國家和地區，包括中國大陸、臺灣、日本、韓國、新加坡及泰國，無論在法律上或政策指引方面， 均沒有事先在公共衛生的危機管理為受障者制定保障?？墒牵?/span>研究發現各個國家和地區，在這次疫情能否有效為受障者提供適切支援， 與這些地區本身在非緊急狀況時為受障者提供的支援制度有密切的關係。 例如臺灣會專門收集受障者的醫療資料和溝通方法等數據，在新冠肺炎期間能有效地為受障者提供個人化支援。泰國於二零零七年成立了全國受障者權利委員會，負責制定和頒布針對受障者的政策。委員會由受障者、參議員和內閣成員組成，並由泰國總理擔任主席。在非緊急情況下建立一個專門探討受障者議題的決策平臺，有助在應急管理中顧及受障者的需求。
在道德規範方面， 部分人對受障者有偏見，認為受障者康復機會較低，在醫療資源短缺時非受障者應優先得到資源，侵犯了受障者應平等地獲得治療機會的權利， 這偏見在外國尤其嚴重 。在其他地方亦有既定觀念認為受障者在疫情中保護自己的能力較弱，感染的機會較高，此帶有歧視的觀念令受障者被禁止使用各種服務。參考國際法和國際範例，周博研博士認為公共衛生危機管理的共融條件包括: 通達、參與、消除歧視、參與政策制定與數據收集、共融應對措施、合作與協調。
此項目最後向香港政府建議了一個在突發公共衛生事件中可採取的包容性政策框架。政策框架從三項規範性責任出發: 保護責任、計劃責任和領導責任。保護責任包括保護受障者身心健康及其權利。規劃責任是指政府應提前做好規劃以降低對受障者身心健康造成影響的潛在健康危害風險，並提高政府在危機中的應對能力。領導責任是指政府作為領導者有責任為受障者提供合適的指引，弘揚互助精神。 研究團隊從這三方面出發，制定了二十二項建議，例如為受障者建立中央登記制度以加強政府和大眾應付往後公共衛生危機的能力; 成立一個以受障者主導的公共衛生應變中心，並由受障者協助營運以減低受障者需面臨的健康風險; 政府亦有責任促進公眾對政府的信任，並確保決策透明度和問責性
研究團隊感謝香港特別行政區政府政策創新與統籌辦事處的資助，及在過去十四個月幫助過他們進行此研究的機構例如:卓新力量、香港失明人協進會、浸信會愛羣社會服務處、語橋社資、香港復康會、香港女障協進會及彩牛居民力量等等。有不少受訪者今天亦有來旁聽此研究分享會，團隊感謝各受訪者對此項目的支持 。
有興趣人士可到 https://www.persons-with-disabilities-in-public-health-emergencies.com/ 獲取更詳細的研究成果報告。成果報告以多種形式發佈，包括文字、語音、手語及簡易圖文版本。此研究亦有Facebook 專頁 https://www.facebook.com/pwdnpublichealthemergencies ，歡迎點讚追蹤以獲取最新資訊。