【講義】從CRPD檢視台灣身心障礙者居住權與生活品質國際研討會

從 CRPD 檢視台灣身心障礙者居住權與生活品質
國際研討會
Examining Taiwan’s Living Rights and Quality of Life of
Individuals with Disabilities through CRPD
An International Conference
「我要住在社區，獨立生活是我的權利」

從 CRPD 檢視台灣身心障礙者居住權與生活品質國際研討會
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目錄 Table of Contents
I. 活動說明…………………………………………………………………………………………………….…………4
Event Details…………………………………………………………………………………………………………10
II. 講義 Lectures………………………………………………………………………………………………………..18
1. 身障者社區居住與獨立生活在台灣的實踐
Independent living in the community for individuals with disabilities, Taiwan
situation
 范晉嘉先生演講稿 Mr. Michael Fan’s Speech Transcript........................................19
 自立生活推動經驗分享 Sharing Experiences on Promotion of Independent
Living…………………………………………………………………………………………………………………….21
 台灣社區居住方案的發展與挑戰 Community Living in Taiwan:Development and
Challenges…………………………………………………………………………………………………………….43
2. 挪威的轉型，從機構本位到社區本位的服務…..
The transformation of Norway, from institution based service to community based
service………………………………………………………………………………………………………………………..65
3. 從機構安置轉型為社區本位服務—生活品質與 Arduin 改革歷程
From institution settings to community based support—Quality of life and Arduin
Experience………………………………………………………………………………………………………………….73
4. 日本去機構化的特色
Characteristics of Deinstitutionalization in Japan……………………………………………………..135
5. 社區融合：重要尚待完成的工作
Community Inclusion: Ruling but Unfinished Task………………………………………..…………..167
6. 身心障礙者權利公約中的社區居住與獨立生活
Living Independently in the Community in the CRPD………………………………………………..185
III. 第二屆智青居住權論壇議程……………………………………………………………………………..197
Living rights for individuals with intellectual disability, a panel discussion

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IV. 社區居住服務案例分享 A Presentation of Community Living Services Examples
…………………………………………………………………………………………..……………….…………......200
V. 論文集 Academic Articles……………………………………………………………………………………….………208
 挪威的去機構化：過程、挑戰與因應 Deinstitutionalisation in Norway: the process,
challenges and solutions…………………………………………………………………………………………..209
 組織轉型……………………………………………………………………………………………………………..…..216
 Organization Transformation ………………………………………………………………………..….223
 以實證為基礎之成果的運用─以提供智能障礙者服務及支持的系統與組織為例
…………………………………………………………………………………………………………………………..…….232
 The use of evidence‐based outcomes in systems and organizations providing services
and supports to persons with intellectual disability………………………………………………….244
 以個人為中心與社區生活支持……………………………………………………………………………….260
 Person Centered Approach and Support for Community Living…………………265
 為什麼心智障礙者無法居住在自己的家裡？--日本的去機構化運動………………….272
 Why persons with intellectual disabilities cannot live his/her own home?～The
Movement of Deinstitutionalization in Japan……………………………………………………………278
 以個人為中心之支持」的促進因子與干擾因子--智能障礙者團體家庭中照顧服務員
之研究……………………………………………………………………………………………………………..………285
 在國際和區域性的法律及政策脈絡中提供身心障礙者支持…………………………….……297
 Supports to Persons with Disabilities in the Context of International and Regional
Disability Law and Policy……………………………………………………………………………….………….324
VI. 附錄 Appendix…………………………………………………………………………………………….……..361
1. 障礙者社區居住權公聽會訴求…………………………………………………………………………….…362
The Right to Community Living for People with Disabilities Public Hearing…..…...…365
2. 台灣成年智能障礙者使用三種居住服務的成果與成本之比較評估….………………….368
Outcomes and Costs of Residential Services for Adults with Intellectual Disabilities in
Taiwan: A Comparative Evaluation

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3. 台灣成年障礙者住宿服務樣態與服務費分析……………………………………….…………….…376
Analysis of Types and Costs of Housing and Support Services for Adults with
Disabilities in Taiwan
4. 台灣社區居住方案的發展與挑戰…………………………………………………………….….……….…378
Community Living in Taiwan: Development and Challenges………………….…….…….……382
5. 各縣市辦理成年心智障礙者社區居住與生活服務方案概況…………………………………388
Summary of Community Based Living and Support Services for Adults with Intellectual
Disabilities in Taiwan’s Major Cities and Counties
6. 衛福部及各縣市政府社區居住方案補助比較…………………………………………….……….…390
Comparison of Community Based Living Program Subsidies Offered by Taiwan’s
Department of Health and Social Welfare and Various Local City and Country
Governments
7. 身心障礙者權利公約………………………………………………………………………………………………391
The Convention on the Rights of Persons with Disabilities，CRPD
8. 台灣社區居住與獨立生活聯盟團體會員名冊………………………………………………….….…408
List of Organizational Members of Taiwan Community Living Consortium

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2015 年社區居住與獨立生活宣導活動
「我要住在社區，獨立生活是我的權利」
壹、活動背景
歐美去機構教養化趨勢
聯合國自 1960 年代開始大力推動世界各國發展「去機構教養化」(de-institutionalization)
的福利措施，同時也呼籲身心障礙者回歸主流與社會融合，使障礙者更有尊嚴的在社會生活、
能主導自己的日常生活與居住模式。
聯合國於 2006 年通過身心障礙者權利公約(The Convention on the Rights of Persons with
Disabilities，CRPD)，我國於去年(2014)通過 CRPD 施行法，其中第十九條指出：障礙者有權
利選擇在哪裡居住以及和誰居住，各國有責任發展社區居住及自立生活方案，促使身心障礙
者和一般人擁有平等機會融入社區。
目前不少國家都已經關掉教養院，例如挪威用五年的時間(1990-1995) 將所有智障者從
教養院搬回與其家人接近的社區居住；瑞典在 1993 年已關閉了所有的教養院；英國自 1990
年代辦理許多智障者在社區獨立生活的方案，這些智障者從 20 床不等的家園（hostel）搬出
來，可以自己選擇房友、選擇喜歡的社區，在社區租房子，由工作人員提供支持性的服務。
當時英國白皮書指出，2004 年必須將所有的教養院關掉。
美國關閉 16 床以上的教養院或轉型，居住服務型態以 4 人以下為主；日本一方面禁止
全日型住宿機構的興建，另一方面也獎勵機構轉型提供社區居住服務。歐美皆禁止智障者被
安置到教養院，尤其是兒童。
台灣殘補式推動改革牛步前進
台灣於 2004 年執行社區居住方案，補助社福團體租賃一般房舍，提供一個
居住單位六人以下的居住服務，目前約 100 個單位，支持 400 多名心智障礙者在

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社區中生活，其中，台中市、新竹市辦理最積極，在所轄區內已提供約 50 位障礙者此方案服
務，等於取代了 50 床機構式的教養服務，然而，對比全台 73 家住宿式機構，其中 50 床以上
者佔 53 家(2001 年統計) ，仍相差懸殊。
服務應以生活品質為根本
從社區居住方案推動以來，所執行的相關的研究明顯發現，住在六人以下社區居住的住
民生活品質比住在教養院、六人以上團體家庭高；我們也做過住民兩年的追蹤研究，包含從
教養院及原生家庭搬出來的智障者，他們住在社區六人以下公寓，會比在教養院及家庭裡面
生活品質高；同時也比較工作人員的工作滿意度，工作人員在六人以下的社區居住的工作滿
意度較高，因為和住民彼此之間的互動是比較好的 (周月清、李婉萍、張意才，2007; Chou et
al., 2011)。
台灣的機構評鑑往往過於重視硬體設施設備的條件，以及服務過程中資料撰寫的完整，
是否能真實反映服務品質有待商榷，歐美先進國家對於服務對象生活品質的重視和研究，我
們認為這應做為組織服務指標的根本。
貳、活動內容
本研討會，將邀請來自挪威、美國、荷蘭、日本共五位講者，分享四國支持身心障礙者
社區居住及生活品質促進改革經驗，同時也將邀請身心障礙者本人擔任主講者之一，分享其
在社區居住與社區融入經驗。
時間：2015 年 9 月 30 日（週三）至 10 月 1 日(週四)am9:00～pm5:00
地點：台大醫院國際會議中心 401 室(台北市徐州路 2 號)
參加對象：預計 200 人，包括政府、立法委員、民間、學界、媒體、服務使用者(身心障礙者
及家屬)、社福實務工作者等。
參、主協辦單位
指導單位：衛生福利部社會及家庭署
台北市政府社會局
主辦單位：財團法人台灣省私立啟智技藝訓練中心
臺灣社區居住與獨立生活聯盟
財團法人瑪利亞社會福利基金會
協辦單位：國立陽明大學衛生與福利政策研究中心

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台北市新活力自立生活協會
中華民國身心障礙聯盟(殘盟)
中華民國智障者家長總會
肆、外籍講師簡介
Janet E. Lord
學歷：愛丁堡大學法學學士碩士、喬治華盛頓大學國際法與比較法碩士。
現職：聯合國顧問(參與所有的 CRPD 草案討論會議)、國際人權律師、美國雪城大學
Burton Blatt 研究所人權及融合發展部資深副總裁。
經歷：擔任聯合國顧問期間，參與所有的 CRPD 草案討論會議。曾造訪三十多國家的身障團
體、各國政府身障部門與 CRPD 倡議組織。2013 年起為 Burton Blatt 學院人權與融合
發展資深研究員，督導此領域之計畫並對政府與非政府組織計畫的評估審核、殘障法、
政策與倡議等提供技術指導。目前亦在中東、北非擔任技術指導，與韓國韓東大學有
合作計畫(Handong University)，並致力於發展中國家的身障人士投票權與各項社會融
合。曾擔任世界銀行委任律師以及國際地雷生還者支持組織主管。
專長：國際身障法、國際身障政策、社會融合發展(inclusive development)。
Christian Boe Kielland
學歷：奧斯陸(Oslo)大學政治學系碩士。
經歷：曾在挪威衛生福利及勞動部擔任副主任，負責包括 1980 年至 1990 年間對智能障礙者
新政策的制定和實施。曾代表挪威參與各個國際組織(包括聯合國大會 CRPD 特設委
員會、歐洲聯盟高級障礙小組、北歐障礙委員會)。
1960 年間曾參與挪威反種族隔離運動(Anti-Apartheid Movement)，目前已退休，並參
與摩爾多瓦共和國(Republic of Moldova)設立的庇護工場活動。
專長：國際關係、國際組織；老年和障礙者的一般性政策與照顧服務。
Jos van Loon
學歷：比利時根特大學(Ghent University)博士。
現職：荷蘭 Arduin 基金會執行長、比利時根特大學(Ghent University)特教系客座教授。
經歷：與智能障礙者共同工作十五年，1994 年起在 Arduin 擔任主管與研究員，並參與了該組
織完全去機構化的過程。與 Robert Schalock 教授、Geert van Hove 教授、Claudia Claes
博士於 2008 年發展出測量生活品質之測量工具(Personal Outcomes Scale,POS)，該量
表並已被翻譯成中文(社區居住聯盟出版)、義大利文、西班牙文、加泰隆尼亞文、葡萄
牙文與德文，並出版兒童版本量表。
2013 年六月獲得美國智能和發展障礙協會(American Association on Intellectual
and Developmental Disabilities,AAIDD)頒發國際獎。
專長：特教領域及智能障礙者生活品質提升。

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Kanji Watanabe(渡邊勸持)
學歷：日本早稻田大學博士。
現職：美作大學社區生活研究員。
經歷：1974 至 2001 年，在愛知縣福利中心協會的個人發展障礙擔任研究專員，該中心為一
綜融型機構，包括綜合性醫院、教養院、特殊學校、職業學校和研究機構。以心理學
研究居住在教養院和醫院者的挑戰行為，16 年後轉調至社會福利署，研究社區生活和
社區支持，其研究包括從機構轉移至社區的統計研究、團體家屋的照護系統，與家屬
和機構員工一起工作，並就參訪的歐洲國家和美國做一比較研究，關於其形成脈絡與
特點之比較研究彙編於 2000 年所撰寫的博士論文《日本的團體家屋》當中。退休後曾
在岡山縣立大學任教 6 年，後在東日本國際大學擔任教授至 2011 年。2014 年起，於
美作大學擔任社區生活研究員。
崔鳳鳴
學歷：美國波士頓大學教育博士。
現職：哈佛大學法學院 CRPD 中國方案主任、南京特殊教育職業技術學院教授、中國人民大
學法學院診所式法律教學與研究中心身障法資深研究員。
經歷：哈佛法學院客座講師、波士頓大學客座講師、中國人民大學法學院客座講師
專長：司法、教育與身障；融合教育法律與政策、比較特教法、中國身障法
伍、研討會議程
第一天 Day 1 (2015.09.30)周三
09：00～09：30
開幕式/記者會
貴賓致詞：衛福部、台北市政府、台中市政府、新竹市政府
主辦單位致詞：啟智技藝訓練中心董事長李崇信、瑪利亞社會福
利基金會執行長/社區居住聯盟理事長陳美鈴
介紹國外貴賓
主題對象主持人/回應人
09：30～10：10
(一)身障者社區居
住與獨立生活在
台灣的實踐
台灣身心障礙者社區居住與自立生活支持服
務的發展歷程與省思，探討現行制度由誰決定
障礙者住在哪裡、和誰一起住、過什麼樣的生
活。
主持與回應：簡慧娟 (社家署署長)(邀請中)
講者：1.范晉嘉(智青/金車教育基金會講師)
2.林君潔(新活力自立生活協會總幹事)
3.周月清(陽明大學衛福所教授)

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10：10～10：30 休息（餐點）
10：30～12：00
(二)挪威成功的完
全社區化居住改
革歷程
挪威 1995 至 2000 年五年社區居住改革緣起、
過程與成功因素及生活品質促進。
主持人：許立民局長(台北市社會局)
講者：Christian Boe Kielland
回應人：邱春瑜(台北教育大學特殊教育學系助
理教授)
12：00～13：30 中餐
13：30～15：00
(三)機構式、社區
式服務生活品質
差異
發展個人生活品質量表(POS)的 Arduin 基金
會，是一個從收容 300 多人的大型教養院轉型
成 135 個居住單位，成功解放智障者到社區居
住的組織，將分享其去機構化的省思。
主持人：李施德（社區居住聯盟國際事務主任）
講者：Jos van Loon(Arduin 基金會執行長)
回應人：周月清(陽明大學衛福所教授)
15：00～15：30 休息（餐點）
15：30～17：00
(四)機構轉型策
略：針對政府、家
庭、社區及障礙者
在亞洲，障礙者照護責任總以家庭負擔為主，
而非從獨立個體的需求與權利來考量，日本進
行的機構轉型值得我國借鏡。
主持人：陳節如（立法委員）
講者：Kanji Watanabe
回應人：張恆豪(台北大學社會學系系主任)

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第二天 Day 2(2015.10.01)周四
主題主講人主持人/回應人
09：00～10：10
(五)去機構化的成
本與效益觀點
典型資本主義的美國社會如何推動去機構
化，其障礙者居住與住宅服務的現況。
主持人：陳美鈴 (社區居住聯盟理事長)
講者：崔鳳鳴博士
回應人：楊瑞玲(資深督導)
10：10～10：30 休息（餐點）
10：30～12：00
(六)CRPD 審查之
觀察與建言
擔任聯合國 CRPD 審查員從 2006 年至今，所
觀察到各國在障礙者居住權發展的情形，台灣
應有的態度與目標。
主持人：王榮璋 (身心障礙盟秘書長)
講者：Janet E. Lord
回應人：林惠芳(智總秘書長)
12：00～13：30 中餐
13：30～15：00
(七)第二屆智青居
住權論壇
服務使用者個人在社區居住與生活的感受，包
括對住宅、環境、住友、社區及人際關係、自
我決策的選擇與權利行使情形。
主持與回應：賴建中(啟智技藝訓練中心住民）
與談者：北、中、南、東部地區接受或曾接受
社區居住方案支持之住民代表。
15：00～15：30 休息(餐點)
15：30～17：00
(八)綜合座談主持：賴建中、李崇信董事長
智障者社區居住案例簡報
廖秋芬(台北市政府身心障礙福利科科長) (邀
請中)
林網市(瑪利亞社區居住中心主任)
與談者：衛福部代表、立法委員、住民代表、
林君潔總幹事、陳美鈴執行長、周月清教授、
林惠芳秘書長

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Event Details

「Independent Living in the Community is My Right」
Examining Taiwan’s Living Rights and Quality of Life of Individuals with
Disabilities through CRPD
An International Conference
I. Event Background
Deinstitutionalization in Europe and America
Since the 1960’s, United Nations has been actively promoting the development of social
service approaches that move toward deinstitutionalization of services. It encourages
mainstreaming and inclusion of individuals with disabilities, so that everyone can live in the
community with dignity, and be empowered to choose where and how they live every day.
United Nations passed CRPD in 2006. Taiwan became an UNCRPD signatory in 2014, which
states in article 19, “Persons with disabilities have the opportunity to choose their place of
residence and where and with whom they live on an equal basis with others and are not obliged to
live in a particular living arrangement”.
Today, many nations have chosen to cease institution based services. For example, In 5
years (1990‐1995), Norway completely transitioned from institution based services to community
home services close to one’s family and friends. Since 1990, England established numerous
programs that enabled individuals with intellectual disabilities to live independently in the
community, moving away from hostels with 20 or more people. They can choose their roommate,
choose the community they like, and rent homes, all with the support of professionals. The
British white paper on the topic at that time stated that all institutions must be closed by 2004.
The United States has closed or transitioned out of institutions with 16 or more beds,
focusing on community living service models with four or fewer people. Japan has prohibited the
establishment of 24‐hour care institutions, while incentivizing institutions to transition to
community based services. Europe and the United States prohibit the placement of individuals
with intellectual disabilities in institutions, especially children.
Taiwan’s Patchwork Approach, Moving at a Snail’s Pace
In 2004, Taiwan began to implement community based living programs, funding service
providers with rent costs, enabling living services with six or fewer residents. There are currently
about 100 such units, providing community based living services for 400 plus individuals with

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intellectual disabilities. Of all counties and cities in Taiwan, Taichung City and Hsinchu City are the
most active, providing services for approximately 50 individuals, reducing individuals in institution
based services by 50. However, this number is minuscule compared to 73 institutions in which 53
are with capacities of 50 or more (2001 statistics).
Services Must be Based on Quality of Life
Research studies have been done on Taiwan’s community based living services. Findings
indicate that the quality of life is higher for residents in homes with six or fewer individuals,
compared to residents in group homes with more than six people. A two year longitudinal study
of individuals who transition from either institutions or homes of birth families found that quality
of life is higher if they live in community based settings with six or fewer people. Study also
indicates that staff member’s job satisfaction is higher in small community based homes, largely
because interaction with the residents are more positive (Chou, Lee, Chang, 2007; Chou etal.,
2011).
Taiwan’s governmental evaluation of service providers places heavy emphasis on facilities,
equipment, and detailed and comprehensive recording of service provision. It is not clear such
evaluations truly reflect service quality. European countries and the United States value the
importance of the quality of service in relations to the quality of life. Quality of life should be the
basis for service quality indicators.

II. Event Information
The conference includes presentations from five distinguished speakers from Norway, the
United States, the Netherlands, and Japan. They will share these four countries’ experiences
in supporting individuals with disabilities to live in the community and improve their quality of
life.

Date: September 30, 2015 (Wednesday) and October 1, 2015 (Thursday)
Time: 9:00 am to 5:00 pm
Location: Taiwan University Hospital, International Conference Center, Room 401
No. 2 Xuzhou Road, Taipei City
Audience: Governmental agencies, universities, media, self‐advocates and families,
service providers. Capacity is 200.
III. Organizers and Partners
Government Agencies:
Social and Family Affairs Administration, Ministry of Health and Welfare
Department of Social Welfare, Taipei City Government
Organizers:
Taiwan Community Living Consortium
Qi Zhi Vocational Training Center
Maria Social Welfare Foundation

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Partners:
Institutes of Health and Welfare Policy, National Yang‐Ming University
New Vitality Independent Living Association, Taipei
The League of Welfare Organizations for the Disabled
Parents’ Association for Persons with Intellectual Disability, Taiwan

IV. Keynote Speakers

Janet E. Lord
Education:
Master of Laws (International & Comparative Law), George Washington University Law School.
Master of Laws, University of Edinburgh, Faculty of Law, Edinburgh, Scotland.

Current Position:
Senior Vice President, Human Rights & Inclusive Development, Burton Blatt Institute,
Syracuse University College of Law.

Experience:
Participated in all of the negotiating sessions during the drafting of the Convention on the
Rights of Persons with Disabilities (CRPD).
Traveled to more than 30 different countries to work with disabled peoples organizations,
governments and national human rights institutions on implementation of the Convention on
the Rights of Persons with Disabilities.
Member of senior management team at BBI, overseeing programming for international and
comparative disability rights research and programming.
Project Director and lead international human rights researcher on project to document the
human rights country conditions of especially marginalized groups in North Korea.

Specialization:
Disability rights; international and comparative disability rights law; disability rights
monitoring and compliance assessments; disability inclusive development; inclusive education
law and policy; employment discrimination.

Christian Boe Kielland
Education:
Master of Arts, Political science with History and English, University of Oslo.

Experience:
Deputy Director General, Ministry of Social Affairs and Health/Ministry of Labor and Social
Affairs/Ministry of Children, Equality and Social Inclusion.
General policy and care services for the elderly and persons with disabilities, included
development and implementation of the new policy for persons with intellectual disabilities.
Participated in various national and international bodies, including the UN General Assembly
Ad Hoc Committee on the Convention on the Rights of Persons with Disabilities, the European
Union High Level Group on Disability, the Nordic Committee on Disability (chaired for 3 years),

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and the Norwegian Research Council for Science and the Humanities.
Norwegian World Federalist Organization and the Norwegian Anti‐Apartheid Movement.
Participate in a project to establish sheltered workshops for persons with disabilities in the
Republic of Moldova.

Specialization:
International relations; international organization; general policy and care services for the
elderly and persons with intellectual disabilities.

Jos van Loon
Education:
Ph. D, Ghent University, Belgium

Current Position:
Manager and researcher at Arduin Foundation, a service provider in the Netherlands.
Visiting professor at the Department of Special Education, Ghent University, Belgium.

Experience:
Worked as a manager and researcher in Arduin.
Participated in the process of complete de‐institutionalization of the former institution
Vijvervreugd, and reforming the organization into a community‐based organization.
Worked and published together with prof. Robert Schalock, Prof. Geert Van Hove, and Dr.
Claudia Claes on the supports‐paradigm and on quality of life. In 2008 this group developed
the Personal Outcomes Scale (POS), which has been translated into Chinese, Italian, Spanish,
Catalonian, Portuguese and German. Recently they developed and published the POS for
children.
Received the International Award from the American Association on Intellectual and
Developmental Disabilities (AAIDD) in 2013.

Specialization:
Special education; improving the quality of life of individuals with intellectual disability

Kanji Watanabe
Education:
Ph.D., Disability science, University of Tsukuba, Japan

Current Position:
Research fellow at the Community Living Research Institute at Mimasaka University, Japan.

Experience:
Worked at the research institute of Aichi Welfare Center for Persons with Developmental
Disabilities from From 1974 to 2001. The center was at the time a general institution consisted
of general hospital, residential institutions, special school, vocational school, and research
institute.
Studied challenging behavior for persons staying at residential institutions and hospitals in
Psychology Department.

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Studied community living and community support in Social Welfare Department.
Researches included statistical research on the movement from institution to community, and
the care system for group homes, working with parents and staff members at institutions, as
well as comparative studies on the movement visiting European countries and America. These
studies were compiled in doctor’s thesis, “Group homes in Japan, its formation and
characteristics – A Comparative Study” in 2000.
Worked at Okayama Prefectural University for 6 years, and then at the Eastern Japan
International University as a professor until 2011.

Feng‐Ming Cui
Education:
Ed.D., special education, Boston University, United States.

Current Position:
Director of China Program, Harvard Law School Project on Disability.
F. Y. Chang Scholar at Harvard Law School East Asian Legal Studies program
Senior Research Fellow at Renmin University Disability Clinic Center
Professor of Nanjing Technical College of Special Education in P.R. China.

Experience:
Research Fellow at Harvard Law School, Boston University, Renmin University

Specialization:
Disability law and policy; inclusive education; China affairs

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V. Conference Schedule
Day 1 (2015.09.30) Wednesday
09:00~09:30 Opening Ceremony / Press Conference
Opening Remarks:
Legislation Yuan, Ministry of Health and Welfare, Taichung City
Government, Hsinchu City Government, Taoyuan City Government.

Introduction by Organizers:
Mr. Chun‐Shin Lee, Chairperson, Qi Zhi Vocational Training Center
Ms. Mei‐Ling Chen, Chairperson, Taiwan Community Living Consortium
Introduction of guest speakers
Topic Summary / Speaker / Session Host / Responder
09:30~10:10 I. Independent living
in the community for
individuals with
disabilities, Taiwan
situation
Session speakers will share their reflections on
Taiwan’s development in community and
independent living and related support services
for individuals with disabilities. They will
examine current laws and regulations and share
observations on the questions of who make
decisions on where, with whom, and how to live.

Session Host and Responder: Ms. Hui‐Juan Jian,
Social and Family Affairs Administration
Speakers:
1. Michael Fan, Self‐Advocate, King Car
Education Foundation Yueh‐Ching Chou,
2. Chun Chieh Lin, Secretary General New
Vitality Independent Living Association
3. Ph.D. Professor, Institute of Health &
Welfare Policy National Yang‐Ming
University
10:10~10:30 Break
10:30~12:00 II. Story of Norway’s
successful
de‐institutionalization,
a move to community
based living
The speaker will share the story of Norway’s
transition from institution based services to
community based living support services from
1995 to 2000, examining the process, success
factors, and impact on individuals’ quality of life.

Session Host: Mr. Li‐Min Xu, Director, Taipei City
Department of Social Welfare.
Speaker: Christian Boe Kielland
Responder: Caya Chiu, Ph.D., Assistant Professor
Special Education National Taipei University of
Education
12:00~13:30 Lunch
13:30~15:00 III. Quality of life Arduin Foundation, the developer of Personal

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differences between
institution and
community based
services
Outcome Scale (POS), went from being a large
institution with more than 300 residents to a
community based service provider with more
than 135 homes. Arduin successfully
emancipated residents with intellectual disability.
The speaker will share Arduin’s reflection on the
de‐institutionalization process.

Session Host: Tim Lee, Executive Secretary, Qi
Zhi Vocational Training Center
Speaker: Jos van Loon, Ph.D., Arduin Foundation
Responder: Yueh‐Ching Chou, Ph.D., Professor,
Institute of Health & Welfare Policy National
Yang‐Ming University
15:00~15:30 Break (refreshments)
15:30~17:00 IV. Strategies for the
transformation of
institutions: from the
perspectives of
government, families,
communities and
self‐advocates
In Asia, the responsibility to provide for the needs
of individuals with disabilities largely fall on birth
families. The individual’s unique needs and
rights are often not part of the consideration.
Japan’s approach of institution transformation
provides an excellent example for Taiwan.

Session Host: Chieh‐Ju Chen, Legislator
Speaker: Kanji Watanabe, Ph.D.
Responder: Heng‐hao Chang, Associate
Professor and Chair, Department of Sociology,
National Taipei University

Day 2 (2015.10.01) Thursday
Topic Summary / Speaker / Session Host / Responder
09:00~10:10 V. The cost and
impact of
de‐institutionalization
How does a capitalistic society such as the United
States promote and implement
de‐institutionalization? The speaker will share
the impact and current status of living support
services for individuals with disabilities in the
United States.

Session Host: Mei‐Ling Chen, Chairperson,
Speaker: Feng‐Ming Cui, Ed.D.
Responder: Ruey‐ling Yang, Senior Social Worker
10:30~12:00 VI. Observations and
suggestions on CRPD
implementation
The speaker will share her experience and
observations in the implementation of CRPD
around the world and offer advice on attitudes

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and goals for CRPD implementation in Taiwan.

Session Host: Jung‐Chang Wang,
Secretary‐General, The League for Persons with
Disabilities, R.O.C.
Speaker: Janet E. Lord
Responder: Hui Fang Lin, Secretary‐General,
Parents’ Association for Persons with Intellectual
Disability, Taiwan.
12:00~13:30 Lunch
13:30~15:00 VII. Living rights for
individuals with
intellectual disability,
a panel discussion
In this session, self‐advocates from Taiwan’s
various regions will share their experiences,
thoughts and feelings on living in the community,
including housing, environment, house mates,
community, relationships, decision making,
self‐determination and rights.

Session Host and Responder: Jian‐Zhong Lai,
self‐advocate, Qi Zhi Vocational Training Center
Forum Participants: Self‐advocates from northern,
central, southern and eastern regions of Taiwan.
15:30~17:00 VIII. Expert Panel
Discussion
Session Hosts:
Jian‐Zhong Lai, self‐advocate
Chun‐Shin Lee, Chairperson, Qi Zhi Vocational
Training Center

Case study presentation.
Community living for individuals with intellectual
disability.
Qiu‐Fen Liao, Taipei City Government
Wang‐Shi Lin, Maria Social Welfare Foundation

Panel Members: Health and Social Welfare
Department, legislator, self‐advocate, Jun‐Jie Lin,
Mei‐Ling Chen, Yueh‐Ching Chou, Hui‐Fang Lin

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Independent living in the community for individuals with disabilities, Taiwan
situation
(一)身障者社區居住與獨立生活在台灣的實踐
Mr. Michael Fan’s Speech Transcript
范晉嘉先生演講稿
LADYS AND GENTLEMEN 在座的貴賓大家好
我是金車教育基金會的范晉嘉今年三十六歲
現在讓我介紹先我自己，
我是個運動員
從九歲開始接觸水的世界,從 1991 年到 2011 年代表國家
到過美國日本馬爾他南非瑞典愛爾蘭希臘
參加大小賽事中獲得上百面的獎牌
兩次以特奧會運動員代表到加拿大的多倫多荷蘭的海牙參加國際會議
我曾和七十九歲的外婆一起泳度南灣三千公尺的海泳.
曾經和媽媽弟弟一起游過最長六千公尺的澎湖灣
也完成金門料羅灣跟四次泳渡日月潭活動
現在的我和大家一樣天天都保持運動良好的習慣
我是個游泳教練
十八歲那年我經過種種的考驗通過紅十字會頒發證照
參加多次講習取得身心障礙游泳教練及裁判資格
2007 年十月曾以裁判身分參加在上海舉辦的特殊奧運世界盃游泳比賽
在職期間我到海洋技術學院學分班進修,
曾經獨自負責教學教會了他們游泳
感謝教練長期的教導也很珍惜自己擁有這項技能才藝
再來談談我的工作情形,
從小我就養成幫忙做家事的習慣
高職學校畢業後進入奎昀貿易公司做滿九年

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從最簡單的打雜清潔工作零件加工開始學習也負責郵件收發
還幫忙老闆跑銀行的業務譬如說到各家銀行存款提款轉帳外匯
也曾經穿戴防塵衣，防塵帽全副武裝的在電子工廠無塵室做檢驗的工作
目前就職於金車教育基金會的藝術空間，擔任行政助理
也同步擔任由教育部主辦 (熱愛生命巡迴教育演講) 的講師
聽到這麼多失業人口的情形下我很幸運還一直擁有工作機會
我的信念
我想要把自己比喻做平凡又廉價的 (鹽) – SALT
廚房做菜絕對少不了它 ,
甚至戰爭爆發時刻它更是平衡士兵身體內分泌的重要元素之一呢
很多年輕人畢業後就窩在家裡舒適區過生活成為父母的負擔
久而久之可能會變成家中搬不動的大件家具
自己感覺沒有被利用的機會也從來不曾去感受生命的價值
最近因為爸爸媽媽搬家到新莊，讓我擁有一段獨立居住的空間
從獨立居住的學習開始，
從時間的掌控
從食衣住行的考量
從金錢的花費
甚至面對最複雜人際關係的處理
希望我自己能夠更有自信更獨立絕對不要成為社會的負擔
人唯有活得有用心靈才會真正快樂
按部就班地追求理想的實現並能夠得到大家的肯定和鼓勵
才能夠成為 SALT OF THE EARTH 就是棟樑之材的意思
我很榮幸參與這次的國際交流會議
希望大家永不放棄讓自己的美夢成真
最後也祝福大家身體健康心想事成

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自立生活推動經驗分享
Sharing Experiences on Promotion of Independent Living
講師/林君潔台北市新活力自立生活協會翻譯：江尚書前社會住宅推動聯盟政策組主任
自立生活推動經驗分享
台北市新活力自立生活協會
林君潔
2015/9/30
簡易
Sharing Experiences on
Promotion of Independent Living
New Vitality Independent Living
Association of Taipei
Lin, Chun Chieh (林君潔)
2015/9/30
Lite

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• 先天性成骨不症
• 求遍名醫，到處求神問卜。無效~~!
• 母親辭去教職工作24小時全職照顧
• 7歲遭拒絕入學。八歲入小學。
廁所→ 一天去一次
換教室→ 四人大橋，用抬的
體育課→ 看教室、散步、溫書
校外教學→ 放假一天
• 台北大學司法系四年畢業，出不了門，找不到工作，不知道可做啥，無
處可去~ 去國外看看好了~~!!
• 2004年取得獎學金，赴日一年，得到生平第一台電動輪椅，個人助理，
無障礙公寓，並學習障礙者自立生活議題。
• 2005年回台灣推動障礙者自立生活
• 2006年搬出來自己居住
• 2007年成立台北市新活力自立生活協會，目的在改善有障礙的環境與
制度
• 2014年赴美參與IVLP（交流計劃）
曾任台北市身心障礙權益推動小組委員、台北市社會福利委員
關於我
有事嗎~?
• Congenital osteogenesis imperfecta
• Consulted famous doctors, sought divine advice. Not work!
• My mother resigned from the school,
taking care of me 24 hours a day.
• Enrollment in the school at 8 years old, but once being denied at 7.
Went to the toilet once a day.
When moving between classrooms → was carried like sitting on a sedan chair
PE class → caretaker of classroom; went for a walk; reviewed school works
School trip → day off
• After graduating from Department of Law, National Taipei University, couldn’t go out,
couldn’t find a job, didn’t know what to do, nowhere to go ~ so I went abroad~~!!
• 2004 - received a scholarship; went to Japan for one year; got my first electric
wheelchair, personal assistant and accessible apartment in my life; learned independent
living issues of people with disabilities.
• 2005 – back to Taiwan, promote independent living of people with disabilities
• 2006 – move out and live alone
• 2007 – establish New Vitality Independent Living Association, Taipei, which aims to
ameliorating unaccessible environments and institutions.
• 2014 – attend IVLP (exchange program) at USA
Serve as: Promotion Group of People with Disabilities Committee Member; Social
Welfare Committee Member of Taipei City
About Me What’s up?

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以往的自立生活：
• 個人/家庭責任/問題
• 家人及專業人員的需求與想像去設計提供服務
• 醫療、復健去解決問題
• 以失能觀點看待一個人。各障別各自推動為主
• 社會→殘補式福利
→慈善、愛心觀點
→以多數人的標準為標準，忽略個別差異性
1、輕中度或有資源的障礙者較有機會自立生活參與社會
2、障礙者的需求及問題由家人一肩扛起
3、把障礙者的需求及問題集中處理
造成
Independent Living in the Past
• Individual/family responsibilities/problems
• Services are designed and provided in the needs and by the
imaginations of family members and professionals.
• Solve problems in the perspectives of medical treatment and
rehabilitation.
• Treated as disabled. Different disability groups work separately.
• Society→residual welfare
→charity, compassion
→standards are set by the majority, ignoring individual differences
1. Persons with mild-to-moderate disabilities or those with resources
have better opportunity to independent living.
2. The heaviest responsibility falls on families regarding needs and
matters of people with disabilities.
3. Centralized treatment on needs and matters of people with disabilities.
Causes

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雖然我們看似生活在社
區中，但每一天過著牢
獄般的生活，充滿限制，
沒有選擇、決定的權利。
何時起床、吃飯、上洗手間、外出?
可以去哪裡? 怎麼去?
可以做什麼? 怎麼做?
可以去找誰? 有誰?
We live in communities
as living in jails, which is
full of limitations; without
choices and right to
decisions.
When should we wake up, have
dinner, use toilet and go out?
Where and how to go?
What and how to do?
Who can we hang out with?

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現在的自立生活：
• 每個人本來都長得不一樣，應該
要有平等的機會
• 打破障礙類別的框架
• Nothing about us without us
• 真正的障礙是來自環境以及人的
態度所造成的問題，要復健的是
整個社會
•人權觀點，法律保障
障礙者也是社會的一份子
障礙者是障礙的專家
Independent Living of Today
• We are born to be different; we should
have equal opportunities.
• Break the framework of disability types.
• The real barriers come form surroundings
and people’s attitudes. It is this society that
needs rehabilitation.
• Human right perspective; legal protection.
People with disabilities are members
of society.
People with disabilities are experts
on disability issues.

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→
Before After
醫療模式社會模式
→
Before After
Medical model Social model

27

請一起想想看……
• 上廁所不知道要關門
• 放在桌上的東西拿回去變自己的
• 外出一直掉東西
• 無法溝通 / 理解外界資訊
• 無法分辨方向感
• 不知道如何用錢買東西
• 不知道如何點餐
這
是
什
麼
障
礙
?
Please think about these with me……
• Don’t know he/she should close door while in a toilet
• Take away stuff on a table as if it was his/her own thing
• Easily lost his/her belongings while being out
• Unable to communicate/ understand external information
• Unable to identify directions
• Don’t know how to use money to buy stuff
• Don’t know how to order a meal
What these disabilities are?

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• 2006年舉辦台日自立生
活研討會，100名參與者
中有一半以上障礙者，亦
有機構包車前來參加
• 日本重度障礙者及個人助
理現身說法，分享日本20
年來的自立生活推動經驗
• 2007年成立台北市新活
力自立生活協會
• We hosted Taiwan-Japan
Conference on Independent Living
in 2006. Over half of the 100
participants are people with
disabilities. Some institutions
rented bus for their members to
participate this conference.
• A Japanese with severe disabilities
and his or her personal assistant
shared their experiences, which
had been over 20 years, on the
promotion of independent living in
Japan.
• New Vitality Independent Living
Association of Taipei was founded
at 2007.

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我們的服務與工作
• 障礙者培力課程
• 同儕服務（訪視/支持）
• 自立生活技巧
• 個人助理服務
• 社會教育宣導
• 政策推動與改革
• 國際交流
服務提供社會運動
自立生活協會：跨障別，由障礙者主導營運，理監事（一半以上）及主管階層必
須為身心障礙者。目前台灣有4間自立生活協會，台北、嘉義、台南、高雄。
我們目前服務對象：肢體、語言、精神、視障，其中以肢體障居多。
美國ADA法明訂各州須編列預算供自立生活中心營運。台灣??
Our services and works
• Empowerment courses for people with
disabilities
• Peer services (visit/support)
• Independent living skills
• Personal assistant services
• Social education and advocacy
• Promote and reform policies
• International exchanges
Service
provision
Social
movement
Independent living associations: across disability types, led and operated by
people with disabilities, (more than half of) directors and supervisors and
executives should be served by people with disabilities. There are 4
independent living associations in Taiwan: Taipei, Chiayi, Tainan and
Kaohsiung.
Our major service recipients: physical, language, mental and visual disabilities.
People with physical disabilities are the majority.
The Americans with Disabilities Act (ADA) expresses that state governments
should budget for operations of independent living centers. How about Taiwan??

30

我們曾做過的努力及推動…
• 北市跨年專區從原本在市府內看電視牆，
移至戶外演唱會現場設置專區。
• 不可拒絕障礙者單獨搭乘飛機。
• 無障礙交通、無障礙空間爭取。
• 爭取職場人力協助（職場助理）制度，目
前極重度障礙者，每月60小時服務可申請。
• 將自立生活支持服務中，個人助理時薪從
110元/小時爭取調至140元/小時，一次派遣
有100元交通津貼並有意外保險；服務時數
從48小時/月調至60小時/月。
What we have done and
promoted…
• The reserved area (for people with disabilities) of Taipei
New Year’s Eve Party has been moved from an indoor
TV wall space to an outdoor concert site.
• In no case shall a person with disabilities be rejected
from travelling by air.
• Fight for accessible transportation and spaces.
• Fight for institutionalization of workplace personal
assistance. Currently, people with profound disabilities
can apply for this services up to 60 hours.
• In independent living support services, the hourly wage
of personal assistant has been raised from 110 to 140
NTD, plus 100 NTD transportation allowance; service
hours has been raised from 48 hours to 60 hours per
month.

31

衛福部自103.11月起調整個人助理服務使
用者之身分別每小時負擔：
1.低收入戶及中低收入戶：0元。
2.家庭總收入平均分配全家人口之金額
達當年度每人每月最低生活費1.5倍以
上未達2.5倍者：14元。
3.一般戶：42元。
• 2011年由中華民國殘障聯盟（現更名為身
心障礙聯盟）主導下，推動入法
• 2012年七月開始，全國各縣市必須提供身
心障礙者自立生活支持服務
Ministry of Health and Welfare has adjusted the self-covered
hourly expenses of personal assistance since November
2014:
1. low-income and middle-low-income households: free
2. The average divided monthly income among each
person in the household falls between the amount 1.5
times and 2.5 times as much as the lowest living index:
14 NTD.
3. General households: 42 NTD.
• The League of Welfare Organizations for the Disabled R.O.C.
(中華民國殘障聯盟) led and pushed into law in 2011 (change
its Chinese name to The League of Welfare Organizations for
People with Disabilities R.O.C (身心障礙聯盟))
• Local governments must provide independent living support
services for people with disabilities since July 2012.

32

第 50 條
直轄市、縣（市）主管機關應依需求評估結果辦理下列服務，
提供身心障礙者獲得所需之個人支持及照顧，促進其生活品質、
社會參與及自立生活：
•一、居家照顧。
•二、生活重建。
•三、心理重建。
•四、社區居住。
•五、婚姻及生育輔導。
•六、日間及住宿式照顧。
•七、家庭托顧。
•八、課後照顧。
•九、自立生活支持服務。
•十、其他有關身心障礙者個人照顧之服務。
23
身心障礙者權益保障法
Article 50
To assist and take care of people with disabilities to improve their living
quality, social participation chances, and obtain independence, the
municipal and county (city) competent authorities shall provide the following
home services according to the results of need assessment:
1. Home care;
2. Daily living reconstruction;
3. Psychological reconstruction;
4. Community living;
5. Marital and reproductive health counseling;
6. Day care and residential care;
7. Home-based care services;
8. After-school care;
9. Supportive service for independent life;
10. Other related personal care services for people with disabilities.
24
People with Disabilities Rights
Protection Act

33

身心障礙者個人照顧辦法
第67~71條（自立生活支持服務）其中，第 69 條
自立生活支持服務內容如下：
一、自立生活能力增進及支持，包括個人生活協助服務、
財務及時間管理、交通及輔具資訊協助。
二、合適住所之協助及提供，包括協助住所租賃、無障
礙環境改善。
三、社會參與及人際關係協助。
四、健康支持服務，包括保健諮詢、陪同就醫。
五、同儕支持。
六、社會資源連結及協助，包括就業支持、就學及經
濟協助、專業服務。
七、其他自立生活相關支持。
People with Disabilities’ Personal Care
Regulations
Articles 67~71 (independent living support
services) among them, article 69 expresses:
The contents of independent living support services are as followed:
1. Improvement and support on independent living abilities, including
individual living support services, finance and time management, transport
and assistive device information.
2. Suitable accommodation assistance and provision, including assistance
on house leasing and improvement of accessible environment.
3. Social participation and interpersonal assistance.
4. Health support services, including health counseling, accompany to
medical treatment.
5. Peer support.
6. Social resource connection and assistance, including employment support,
school attendance and economic assistance, professional service.
7. Other relevant support.

34

自立生活支持服務
• 從解決物理、生理問題，到心理層面的注重。讓障礙
者過著有尊嚴的生活。
• 以實現自主、有選擇性的生活為目標。
• 障礙者重拾應有社會角色。
• 實踐公民權。
• 以當事人為中心。當事人是主角，其他人皆為配角。
• 須伴隨著倡議，創造資源（民間/政府），改變不適合
障礙者的制度與環境。
自己選擇自己決定自己負責
Independent living
support services
• From solving physical, physiological issues to focusing on
psychological aspects. People with disabilities can live with
dignity.
• Aims to realization of an autonomy, selectable life.
• People with disabilities play their due roles in an society.
• Fulfill citizenship
• The person concerned shall be put on center. They are
protagonists, while others play supporting roles.
• Shall be accompanied by advocacies, creating resources
(nongovernmental/governmental), reforming institutions and
environments that are unsuitable for people with disabilities.
Self
choice
Self
decision
Self
responsibility

35

服務問題點
1、自立生活服務不等於個人助理服務
2、提供跨障別服務（明年北市將解套此限制）
3、目前服務多由專業人員或家長團體承接服務，障礙者難以主
導自己的服務。
4、個人助理服務時數不足難以自立
5、須加強障礙者自我選擇決定負責訓練
6、個人助理未能受到保障如：薪資、勞健保、升遷、尊嚴…等
7、同儕支持服務僵化且不應以認証方式施行。須提供交通或人
力支持，讓同儕員得以執行工作。
8、應有支持家人支持障礙者自立的相關訓練或服務。
Problems in services
1. Independent living service is not equal to personal assistance.
2. Provision of services across disability types (Taipei City will loosen this
limitation next year)
3. Current services are mostly provided by professional staffs or parent
groups, so that people with disabilities can hardly lead their own services.
4. Service hours of personal assistance provisions is not enough for
independent life.
5. Trainings for disabled people’s self choice and responsibility needs to be
strengthened.
6. Personal assistants are not safeguarded, such as: salary, labor and health
insurance, promotion and dignity, etc.
7. Peer support service is rigid, which should not be implemented through
authentication. Transport and manpower supports should be provided, so
that the services can be implemented by peer members.
8. Family members should support relevant trainings or services for
independence of people with disabilities.

36

我們政府行事一定要考量：
1、考量財務負擔，因資源有限
2、需公平分配
你們應該是要訓練復健「好起
來」，不可能長期靠政府，這是
依賴!不是自立。
長官你一個月出幾次門，一天吃幾餐? 為
什麼有人每天只能躺在床上看天花板?為
什麼有人一天吃不到一餐?為什麼有人沒
人協助洗澡上廁所?如果沒有亂花錢，資
源是不是真的不足我們不知道，分配不
公這是可以確定的!
障礙是每個人都會面臨到的處境，協助
自立生活是政府的責任，請不要卸責
We government has to
consider:
1. Financial burden, since our
resources are limited.
2. Equal distribution.
You disabled people should
be trained to get
“rehabilitated”. It is not
possible to always rely on
government.This is reliance!
Not independent.
Hey officials, how often do you go out? How many meals
do you eat a day? Why should anyone lie on bed, starring
at ceiling everyday? Why would anyone eat less than a
meal a day? Why should any disabled person take a bath
or go to the toilet without assistance? We are not sure if
it is true to say that resource is scarce, but it is certain
that resources are unfairly distributed.
Disability is a situation that everyone may face.
Assistance on independent living is government
responsibility. Please do not shirk your responsibility.

37

1、電動輪椅：98000元
→申請職務再設計：68000元
→社會局：25000元
→罕見疾病基金會輔具補助
2、人力協助：
→居家服務：48小時/月
→個人助理服務：30小時/月
→職場助理服務：43小時/月
→罕見疾病基金會補助個人
助理服務：30小時/月
3、生活費用、交通費、
餐費、手機、網路費、
休閒娛樂費用、其他→
自立生活協會工作、演
講、接活動….等等
4、交通：
捷運、公車、無障礙計
程車、復康巴士
5、興趣：旅行、逛街、
游泳、喜愛「五月天」
現
在
在
台
北
的
生
活
1. Electric wheelchair: 98,000 NTD
→Application for job redesign:
68,000 NTD
→Department of Social Welfare:
25,000 NTD
→Assistive device allowance by
Taiwan Foundation for Rare
Disorders
2. Human resource assistance
→Home services: 48 hours per month
→Personal assistant service: 30 hours per
month
→ Workplace assistant services: 43 hours per
month
→Personal assistant subsidy by Taiwan
Foundation for Rare Disorders: 30 hours per
month
3. Living expenses, transport fares,
meals, mobile phone, Internet fee,
leisure and entertainment fees,
others→works in the Independent
Living Association, speech, activities,
etc.
4. Commuting:
MRT, bus, accessible taxi,
rehabus (accessible bus)
5. Interest: travel,
shopping, swimming,
be fond of “Mayday”
Life in Taipei

38

 結婚?帶小孩?
 店家、餐廳有障礙，輪椅進不去
 搭乘交通工具依然充滿著障礙和危險
現在煩腦的事情…
 若骨折或身體弱或未來退化時，個人助理
或居家服務時數不足
若無住宅法之重罰條款保障權利，
連自己的家門都進不去
 Marriage? Bearing children?
 Stores and restaurants are not
accessible for wheelchair users
 It is full of obstacles and
dangers while taking vehicles
What I worry about…
 If breaking the bone, or becoming more
and more frail and degenerated in the
future, current service hours of personal
assistant and home service are not enough.
If there were no heavy penalties
in Housing Act, we could even not
access our own home.

39

無障礙空
間
住宅
交通
輔具
各項⼈⼒⽀持
經濟安全
自立生活
社會運
動
障礙者充權
家人及社會
態度須轉變
法
律
保
障
‧
平
權
Accessible
space,
residence and
transportation
Assistive
Device
Human
resource
supports
Economic
Security
Independent
Living
Social
movement
Empowerment to
people with
disabilities requires
his/her family and
the whole society to
change attitudes
Legal
protection,
equal
rights

40

困難點
1、障礙當事者說出自己的需求及為自己發聲
2、障礙當事者須克服自身體能、環境及經濟等等障礙出來推動
（現行制度及資源不足）
3、家人的擔憂、保護及限制
4、跨障別 / 跨需求/ 跨階級
5、集結力量 6、引起社會共鳴改變社會原有價值觀
障礙者培力
計劃
社會教育
與宣導
立法/修法
保障權利
跨障別對
話與合作
未來目標
Difficulties
1. People with disabilities speak out their needs and speak for
themselves.
2. People with disabilities need to overcome barriers to stand
out for themselves, such as his/her physical condition,
environment and economic barriers. (current institutions and
resources are not enough)
3. Worry, protection and limitation of their families.
4. Across disability types / needs / classes
5. gather strengths 6、arouse resonance change
social values
Empowerment
programs for people
with disabilities
Social
education and
advocacy
Legislation /
amending the laws
to protect rights
Conversation and
cooperation across
disability types
Future goals

41

身心障礙者權利公約
第十九條自立生活與社區融合
本公約締約各國確認，所有身心障礙者享有在社區中生活的平等
權利以及與其他人同等的選擇，應當採取有效和適當的措施，以便於
身心障礙者充分享有這項權利，充分融合參與社區，包括確保：
（一）身心障礙者有機會在與其他人平等的基礎上選擇居住地點，選
擇在那裡及與那些人一起生活，而不是被迫按特定的居住安排
來生活。
（二）身心障礙者獲得各種居家、住所和其他社區援助服務，包括必
要的個人援助，協助他們在社區生活和社區融合，避免與社區
隔絕或隔離。
（三）身心障礙者可以在平等基礎上享用為大眾提供的社區服務和設
施，且這些服務和設施符合他們的需要。
Convention on the Rights of Persons
with Disabilities
Article 19 - Living independently and being included in the
community
States Parties to this Convention recognize the equal right of all persons with
disabilities to live in the community, with choices equal to others, and shall take
effective and appropriate measures to facilitate full enjoyment by persons with
disabilities of this right and their full inclusion and participation in the
community, including by ensuring that:
a. Persons with disabilities have the opportunity to choose their place of
residence and where and with whom they live on an equal basis with others
and are not obliged to live in a particular living arrangement;
b. Persons with disabilities have access to a range of in-home, residential and
other community support services, including personal assistance necessary to
support living and inclusion in the community, and to prevent isolation or
segregation from the community;
c. Community services and facilities for the general population are available on
an equal basis to persons with disabilities and are responsive to their needs.

42

chunil92@gmail.com
謝謝聆聽、指教!!
chunil92@gmail.com
Thank you for
listening and
advice!!

43

台灣社區居住方案的發展與挑戰
Community Living in Taiwan: Development and Challenges
講師/翻譯：周月清教授
從CRPD檢視台灣身心障礙者居住權與生活品質國際研討會
September 30-October 1, 2015
Supporting Good Life in the Community for People with
Disability
支持障礙者在社區過個好生活
Community Living in Taiwan:
Development and Challenges
台灣社區居住方案的發展與挑戰
• 臺灣社區居住與獨立生活聯盟/Taiwan Community Living Consortium (TCLC)
• 網站/website:http://www.communityliving.org.tw
• 研究者/報告者：周月清
• Presented by Chou, Yueh-Ching (choucyc@ym.edu.tw)
1

44

聯合國身心障礙者權利公約(CRPD)
第19條獨立生活和融入社區
• 本公約締約各國確認，所有身心障礙者有在社區中生活的平等權利以
及與其他人同等的選擇，應當採取有效和適當的措施，以便於身心障礙
者充分擁有這項權利，充分融入和參與社區，包括確保：
（一）身心障礙者有機會在與其他人平等的基礎上選擇居住地點，選擇在那
裡及與那些人一起生活，而不是被迫按特定的居住安排來生活。
（二）身心障礙者獲得各種居家、住所和其他社區支持服務，包括必要的個
人助理，協助他們在社區生活和融入社區，避免與社區隔絕或隔離。
（三）身心障礙者可以在平等基礎上使用為大眾提供的社區服務和設施，且
這些服務和設施符合他們的需要。
2
Article 19, CRPD:
Living independently and being included in the
community
• States: recognize the equal right of all persons with disabilities
(PWD) to live in the community, with choices equal to others, and
shall take effective and appropriate measures to facilitate full
enjoyment by PWD of this right and their full inclusion and
participation in the community, including by ensuring that:
• a) PWD have the opportunity to choose their place of residence
and where and with whom they live on an equal basis with others
and are not obliged to live in a particular living arrangement;
• b) PWD have access to a range of in-home, residential and other
community support services, including personal assistance
necessary to support living and inclusion in the community, and to
prevent isolation or segregation from the community;
• c) Community services and facilities for the general population are
available on an equal basis to PWD and are responsive to their
needs.
3

45

台灣心智障礙者居住服務類型
Types of residential services for people with ID in Taiwan
機構式
Institutional
全日型住宿照顧
機構
24 hrs
Institution
(7->201 beds)
小型：7～29人
中型：30～200人
大型：201人以上
Small:7-29 beds
Medium:30-200 beds
Big: >201 beds
方案式
Program
夜間式住宿機
構
Evening
Hostel
(7-200 beds)
小型：7～29人
中型：30～200人
Small:7-29 beds
Medium: 30-200
beds
社區居住
Community
living
6人以下
1-6 beds
4
居住服務/Residential services
台灣身心障礙福利機構
(# of institutions for PWD in Taiwan)
提供夜間住宿或全日型的服
務機構
• 小型(29人以下)=32家
• 中型(30~200人)=115家
• 大型(201人以上)=11家
Hostel for evening and
institution for 24 hrs
•“small” <29 beds: 32 units
•“medium” 30-200 beds: 115
units:
•“big” >201 beds: 11 units
5

46

社區居住與生活的定義
Def. of Community living
社區(Community)
• 和一般人一樣的地點
• 居住房舍是一般住家
• 生活機能都在社區中
• 和一般家戶人口數一樣，
少於六人
• Community
– Living in the community as others,
– Ordinary flat/housing,
– Daily life in the community,
– flat mates <6 due to household
family members <6 persons in
Taiwan (usually)
生活(Living)
• 日夜是區隔的
• 自主的日常生活
• 正常的生命節奏
• 包含休閒與社交
• Living
– Daily and evening life
separated
– Self control own daily life, life
style,
– Involved in recreation and
social activities
6
社區居住服務規定
• 服務對象：十八歲以上身心障礙者
• 專業服務團隊：督導、社工及教保員；每位教
保員服務之居住單位最多以二個為限
身心障礙者個人照顧服務辦法
7

47

• 合法住宅使用建築物
• 每一居住單位服務不超過六人
• 平均每人使用樓地板面積不得少於16.5平方
公尺
• 應有獨立出入口
• 建築物應投保公共意外責任險 (依機構投保
公共意外責任保險規定)
• 不得兼辦社區式日間照顧服務。
身心障礙者個人照顧服務辦法8
Regulations of community living services
Based on Personal Care Service Regulation (Disability
Rights Act)
• Users: >18 years old with disability
• Team members providing services: supervisor,
social worker, care workers (care workers
working for less than 2 units)
• Legal housing
• Each unit less than 6 residents
• Each resident has to have 16.5 m2
• With individual/certain door use for entrance and exit
• Housing insurance available
• Only for residential service use—cannot also use
for daycare (two services provided in the same
unit) 9

48

現況
• 自2004年開辦服務
• 除基隆市、屏東縣、金門縣與連江縣外，共
有18 19個縣市提供社區居住服務
• 約100個居住單位，服務人數約400位。
• 服務對象：成年智能障礙者、伴有智能障礙
之多重障礙者、自閉症與精神障礙者。
10
Community Living Services (CLS)
Current Development
• Launched in end of 2004
• 18 local authorities (county/city) provide such
CL service
(22 local authorities in Taiwan)
• 100 units and 400 users/residents
– in Taiwan, the users/residents do not own the
flat, they need to pay rent through the
providers(NGOs)
• Who are the Qualified users?
• >18 ys with ID/autism/mental difficulty, or
multiple disability in addition ID
11

49

四種補助型態
• 衛福部方案
• 縣市自辦方案：如台北市、桃園市、新竹市、
台中市、台南市、高雄市
• 衛福部方案+縣市部分補助：如苗栗縣、台中
市、南投縣、台東縣
• 機構自辦
12
Four different types of the
CLS
• Funded by central government:
• Funded by the local authority: 6 local
authorities (Taipei City,Tauyen City, Hsinchu
City, Taichung, Tainan City, Kaushung City)
• Both ways: 4 local authorities
• NGOs/providers: without funding
from government
13

50

運作經費
• 一個社區居住單位的運作成本約70萬到120
萬/年
• 機構每年約須自籌20萬到100萬
14
Cost of CLS provided
• One unit one year: NT$ 700,000-
1,200,000 (20,000- 35,000 Euros)
• Gap between the cost and funding
from the Governmental:NT$20,000-
1000,000 (7000-30,000 Euros):
Providers deal with the shortage of
budget themselves
15

51

服務發展的困境
• 經費補助不足，機構難以永續經營
• 人員召募不易
• 不理解社區居住理念
16
Difficulties of CLS
development
• Financial: shortage of funding, no future,
• Staff recruitment: shortage of service
workers working in the evening/overnight,
staying with the residents
• The philosophy/principles/values of the
CLS: misunderstood or cannot be supported
by the service workers, managers or
providers, even the parents and policy
makers
17

52

租屋面對的困難
• 排斥身障者承租
• 完全合法的住宅難找
• 都會與偏鄉的差異
• 社區管委會的影響
• 房東主要為投資獲利，租屋為過渡期
• 住宅法排除法人承租社會住宅資格
18
Difficulty: Flat/house rent in
the community
• PWD not welcomed/discriminated
• Available housing/flats in the community difficult
meet the regulation
• Gap between urban and rural area(e.g., attitudes
from the owners, neighborhood)
• The attitudes from Community Self Management
Council: “not in my backyard” ?)
• The owner only for benefit, the rent period time for
short-term
• Housing Act in Taiwan: NGOs not qualified for
renting social housing
19

53

社區居住單位歷年調查統計
Number of units of CLS in Taiwan
20
但是…
• 社區居住服務發展10年，服務人數僅400多人
• 住宿機構2008年150家，2014年成長至165家！
• 2009年身心障礙者生活狀況及各項需求評估調查
報告，總計7 萬 3,994 人住在機構，占身障人
口 6.82%，意即有 92.84%是居住在「家宅」。
21

54

CLS seems growing, BUT
• Since 2004, 10 years after, all users
are only 400 (0.03% of all population
with disability) (movement since 2001)
• Number of institutions maintain
growing, eg., 150 institutions in 2008,
165 in 2014
• 73,994 PWD living in the institution
(6.8% of all population with disability
vs 92.8% living with family) (source:
2009 disability survey data)
22
2014社區居住服務使用者問卷調查
2014 Census survey—users of CLS and their
parents
• Questionnaires: standardized and
open-ended questions
• Participants: 421 residents from 89
units provide by 44 providers/NGOs
• Completed the interview:
– 298 residents with ID (17 out of them
with MD) (response rate 71.3%)
– 169 parents of the residents
23

55

分析結果
Results
住民
Chapter 1: Residents
24
入住社區前住哪?
where did you live before moving in here?
25
72%
2%
3%
22%
1%
1.與家人同住/lived w/ family
2.住在親戚朋友鄰居家/lived
w/relative, friends
3.29人以下全日型住宿服務/lived in
institution (<30 beds)
4.30人以上全日型住宿服務/lived in
institution (>30 beds)
5.自己租屋/lived alone(rent a flat)

56

入住社區後的改變?
Comparing with previous, what do you feel after
you live here?
26
68%
11%
11%
10%
1%
2%
1. 比較會做家事/more capable to do
housework
2. 工作比較穩定/more stable for
work
3. 比較獨立/more independent
4. 比較快樂/happier
5. 比較自由/having more freedom
6. 比較健康/healthier
您對目前這種居住安排，還有甚麼心得想跟大家分享？
What do you feel now you live here?
• 住得很開心要再住
• 住這裡很好很快樂
• 可以讓家人更放心，然
後讓自己更獨立
• 聽到室友聊天會很開
心
• 很快樂,有老師有宿友
做伴
• 有老師鼓勵
• 有人可以互相幫助
• 像自己的家
• Happy, want to continue to
live here
• Live here is very good and
happy
• My family feel relieved, I
become more independent
• Listen to roommates’
chatting, feel happy
• Very happy, have teacher
and roommates being
companions
• Having teacher’s support
• have some one to help,
help one another
• Here like my own home
27

57

• 學習很多不同生活技能，
與外面很多朋友交談
• 住這裡有家的感覺，讓我
很自由，很快樂
• 1.有網路2.可以安排報名
馬拉松3.可以晚睡
• 很自由，很快樂，跟喜歡的
室友同住
• 很像一家人
• 可以自由進出
• 感覺很幸福
• 想買手機
• 可以交到好朋友
• 住這裡很好、我很喜歡、要
繼續住
• Learn many social skills and
make many friends in the
community
• Feel like home, very free,
happy
• Have internet, can attend
marathon, can go to bed
late
• Very free, happy, like to live
with roommates
• We are like a family
• Have freedom for going out
and in
• Feel luckily, happy
• Want to buy cell phone
• Can have good friends
• Live here very good, I like
it
28
• 住的好、買東西方便、爸爸
可以常到家園看我
• 朋友互相照顧很好
• 有自己的房間很好
• 我喜歡自己照顧自己，學
會煮菜技術回家也煮給阿
嬤吃
• 可以做自己、很快樂
• 我要住在OO家，不要回教
養院
• 很快樂可以自己洗衣煮飯
• 住這裡很自由，可以吃到
自己煮的菜
• 可以選擇自己要看的電視
• Convenient for shopping, my
father can often come to
visit me
• Friends care for one another
• Have own bed room is good
• I like to take care of myself,
learn how to cook, I can
cook for my grandmother
when I go home
• Can be myself, very happy
• I will live here, I do want to
move back to OO institution
• Very happy and I can do
laundry and cook for myself
• Very free, I can eat food that
I cook myself
• I can choose the TV
programs that I like to see
29

58

你未來是否想買房子?
In the future do you want to buy a flat for
yourself?
2014年社區居住服務使用者問卷調查
30
是/yes
34%
否/no
42%
不知道
/don't
know
22%
其他/other
2%
是否聽過聯合國身心障礙者公約
Have you heard the UNCRPD?
31
沒有/no,
85%
好像有
/seem so ,
6%
有/yes, 9%

59

您同意智障者有權利選擇住在哪裡？
Do you agree people with ID have rights to
choose where she/he likes to live, as other
people?
32
沒有意見/no
idea
27%
不同意
/disagree
4%
同意/agree
69%
您同意智障者有權利選擇和誰同住嗎？
Do you agree that people with ID have rights to chose
whom she/he likes to live with, as other people?
33
沒有意見
/no idea,
24% 不同意
/disagree
, 3%同意
/agree,
73%

60

你對住在現在的居住服務單位，會有甚麼意見或改
善之處？要給服務提供者、工作者或政府？
Do you have any suggestions given to the
practitioners, managers or government?
• 有電腦、液晶電視、PS4
• 想要游泳、想要裝冷氣
• 想要彈琴
• 喝咖啡
• 想在家唱卡拉OK
• 做烘培粿子
• 獲得更多的自由
• 一人一間
• 給我有隱私權
• Have computer, TV, PS4
• Go swimming, have
air conditioner
• Play piano
• Drink coffee
• Karaoke
• Make cake
• More freedom
• Have own bedroom
• Have privacy
34
• 自己的錢可以保管
• 空間大一點
• 多睡一點
• 運動多一點
• 跟社工姊、生輔姊跟家
人有個良好的溝通
• 好一點的隔音設備
• 住久了想回家一個人
住
• 喜歡住在大樓有電梯
• 還是喜歡和家人住
• Manage money by
myself
• More space
• Sleep more
• More exercise
• Good communication
with workers and
family
• Quiet place
• Live alone
• Accommodation with
elevator
• Like to live with family
35

61

• 希望有結婚的社區居
住
• 沒有時間上控制，有自
由的空間
• 希望房子新一點
• 希望有工作機會、賺更
多錢
• 希望可以獨立生活
• 零用錢自己保管
• 多舉辦活動
• 房租比較高，就沒辦法
住
• CLS available for
married couple
• Having free time
• Accommodation can
be renovated/new
condition
• Have paid work and
make more money
• Rent can be
cheaper
36
37
家長
Chapter 2: Parents

62

您覺得ＯＯ接受社區居住服務後，最明顯的改變是？
After ＯＯ uses CLS, what do you think she/he has
changed most obviously?
38
0% 5% 10% 15% 20% 25% 30% 35% 40%
1. 比較會做家事/more capable to…
2. 工作比較穩定/more stable for…
3. 比較獨立/more independent
4.比較快樂/happier
5.比較自由/having more freedom
6.比較健康/healthier
7.沒有差別/no difference
8.其他/other
%
您支持ＯＯ自主決定日常生活怎麼過嗎？
Do you support that ＯＯ is able to make her/his own
decision in her/his daily life?
39
支持/yes ,
81%
不支持/no ,
4%
不一定
/may be,
15%

63

建議
• 搭配「負擔得起」的社會住宅等措施，障礙者才有邁向更獨
立生活的可能
• 以多元化居住服務模式推動，才能更符合CRPD居住權的
精神
• 住民/服務使用者，所有障礙者包括心智障礙者，以及家長
有權利知道聯合國CRPD及國內施行法已經通過
• 資訊獲知的權利, 包括CRPD
• 重視心智障礙者居住權、在社區過好生活的權利
40
Implications
• In order to support this group of
people having good life (self control,
dignity, freedom, higher quality of life,
etc.) in the community, and meet the
requirement of Article 19 of the CRPD
– Affordable housing, e.g., social housing,
provided
– Government stable funding support
– Individual and group advocacy services
provided: rights for housing, rights for
life, information accessibility including
CRPD 41

64

願每位弱勢者都擁有一個家
Everyone has the right to have a home
並成為社區好厝邊
and a full life in the community
臺灣社區居住與獨立生活聯盟
42
相關參考書目
References
• 相關中文資料詳見住盟網站：website:http://www.communityliving.org.tw
• Chou, Yueh-Ching, Pu, Cheng-yun, Kröger, Teppo, Lee, Wan-
ping & Chang, Shu-chuan (2011). Outcomes of a new residential
scheme for adults with intellectual disabilities in Taiwan: A two-
year follow-up. Journal of Intellectual Disability Research
(JIDR), 55, 823-831.
• Chou, Yueh-Ching, Kröger, Teppo & Lee, Yue-Chune (2010).
Predictors of job satisfaction among staff in residential settings for
persons with intellectual disabilities: a comparison between three
residential models. Journal of Applied Research in
Intellectual Disabilities, 23, 279-289.
• Chou, Yueh-Ching, Lin, Li-Chan, Pu, Cheng-yun, Lee, Wan-ping
& Chang, Shu-chuan (2008). Outcomes and Costs of Residential
Services for Adults with Intellectual Disabilities in Taiwan: a
Comparative Evaluation. Journal of Applied Research in
Intellectual Disabilities (JARID), 21, 114-125.
43

65

(二)挪威的轉型，從機構本位到社區本位的服務
The transformation of Norway, from institution based service to
community based service
講師：Christian Boe Kielland 翻譯：高靖翔、張家寧研究生校譯：邱春瑜助理教授
The transformation of Norway,
from institution based service
to community based service
Speech at
UNCRPD conference
30 September 30 - 1 October 2015, Taipei, Taiwan
Christian B. Kielland
Oslo, Norway Phone (+47) 22 52 16 83, mobile (+47) 988 52
688 E-mail: cbk@vikenfiber.no

挪威的轉型-
從機構本位到社區本位的服務
Christian B. Kielland
Oslo, Norway Phone (+47) 22 52 16 83, mobile (+47) 988 52 688 
E-mail: cbk@vikenfiber.no

66

Introduction
The system that we had before the reform
The new system
Why did we want the reform?
The political process
How we organised ourselves
Our tools
Important issues
Later developments
Concluding remarks
Outline

大綱
‧前言
‧在改革前的制度
‧新制度
‧為什麼我們要改革？
‧政治進行方式
‧如何自我安排
‧我們的工具
‧重要議題
‧晚期的發展
‧總結
CC1

67

385 000 km
5 million
13/km
65.900
6
NORWAY:
Area:
Population:
Population density:
GNP/capita, 2014, US $:
GNP/capita rank:
36 000 km
23 million
644/km
43.600
19
TAIWAN:
2
2 2
2

385 000 km
5 million
13/km
65.900
6
NORWAY:
Area:
Population:
Population density:
GNP/capita, 2014, US $:
GNP/capita rank:
36 000 km
23 million
644/km
43.600
19
TAIWAN:
2
2 2
2面積
人口
人口密度
GNP(國民生產毛額)/
每人平均 ,2014,美元
GNP(國民生產毛額)/排名

68

Why did we want the reform?
• Belief in normalization
• Giving local government greater
responsibility was a general trend
at the time
• Inadequate service provision
• Cases of mistreatment

我們為什麼要進行改革?
正常化的信念(Belief in normalization)
就當時普遍的趨勢，
賦予地方政府更大的責任
服務供給不足(Inadequate service provision)
虐待案例(Cases of mistreatment)

69

Our tools
• Legislation
• Recommendations
• Financial grants
• Information
• Expert advice for municipalities

管道策略 Our tools
立法(Legislation)
建言書(Recommendations)
財政補助(Financial grants)
資訊(Information)
市政當局的專家建議
(Expert advice for municipalities)

70

Important issues (1)
• Where should the institution inmates settle?
• The planning process: plans for each
individual, for each municipality,
for each institution
• Aiding people in exercising their
legal capacity
• Budgeting and financing
• Facilitating problem-solving during
the reform process

重要議題(1)
• 收容者應該安置在何處機構呢?
• 計畫過程：分別為個人、市政當局、機構的
計畫
• 幫助人們行使其法律權利的能力
• 預算編制與財務
• 改革過程中促進問題解決

71

• Service provision
• Leisure-time activities, holidays
• Training of personnel
• Coercion
• Housing

重要議題(2)
提供服務(Service provision)
休閒活動、假期(Leisure‐time activities, holidays)
專業人員培訓(Training of personnel)
強迫(Coercion)
住宿安排(Housing)

72

• Health services
• Education
• Work and employment
• Other day-activities
• Follow-up of the reform

重要議題(3)
保健服務(Health services)
教育(Education)
工作與就業(Work and employment)
不同的日常活動(Other day‐activities)
改革後續追蹤 (Follow‐up of the reform)

73

(三) 從機構安置轉型為社區本位服務—生活品質與 Arduin 改
革歷程 From institution settings to community based support
‐‐Quality of life and Arduin Experience
講師：Jos van Loon 翻譯：李施德社區居住聯盟國際事務部主任
From institution settings to
community based support
Quality of life and the Arduin
Experience
Jos van Loon, StichtingArduin en
Vakgroep Orthopedagogiek, Gent
Februari 2013
Jos van Loon, PhD., Stichting Arduin and
Department of Special Education, Ghent
University
June 2015

從機構安置轉型為
社區本位服務
生活品質與
Arduin 改革歷程
Jos van Loon, StichtingArduin en
Vakgroep Orthopedagogiek, Gent
Februari 2013
Jos van Loon, PhD.,
荷蘭 Arduin 基金會
比利時 Ghent 大學，特殊教育學院
June 2015

74

Today many service providers for people with
disabilitiesface quite fundamentalchallenges that
questiontheir existence in their current form
• From congregated settings to community based
support?
• EASPD* (2013): “….It is time to put forward
concrete planning for deinstitutionalization and
community-based settings involving persons with
disability and all mainstream and disability
stakeholders.”
• *European Association of Service Providers for Persons with Disabilities

現今許多身心障礙服務單位面對著一些很根本
的挑戰，質疑他們現有的營運型態。
• 集體環境轉換成社區本位服務?
• EASPD* (2013): 「…推進去機構，落實為身心障
礙者及所有利益相關者，提供社區本位服務具體計
畫的時刻到了。」
• *「歐洲身心障礙服務組織聯盟」European Association of Service Providers for Persons with
Disabilities

75

But there are more challenges….
• decreasing resources
• a movement from vertical to horizontal organization
structure
• from general services to individualized supports
• align values with service delivery practices
• focus on evidence and evidence-based practices
• the need for capacity building in reference to organization-
based self-assessment, strategic planning, and performance
evaluation (Schalock & Verdugo, 2012).

但還有更多的挑戰…
• 資源削減
• 組織架構由多層次垂直型轉換成扁平型
• 由通用式服務轉換成個別化支持
• 校準價值觀及服務提供做法
• 注重實證及實證本位實踐
• 需要參照組織本位自我評量、策略規劃、績效評量而建
構組織能力 (Schalock & Verdugo, 2012).

76

Important in this respect is the mondial
influence of the UN Convention on the
Rights of People with Disabilities
(CRPD;2006 ):

聯合國身心障礙者權利公約對此發展的
重要影響。(CRPD;2006 ):

77

General Principles:
Participation and Inclusion
• Participation is important to correctly identify specific
needs, and to empower the individual
• Full and effective participation and inclusion in society
is recognized in the Convention as:
• A general principle (article 3)
• A general obligation (article 4)
• A right (articles 29 and 30)
Convention on the Rights of
Persons with Disabilities

一般原則:
參與及融合
• 必須有參與才能正確的找出確實的個人需求並賦權
• 充分及有效的社會參與及融合認定於公約內:
• 基本原則 (第三條)
• 基本義務 (第四條)
• 權利 (第二十九及三十條)

78

General Principles:
Accessibility
• Important as a means to empowerment and inclusion
• Both a general principle and a stand-alone article (article 9)
• Access must be ensured to:
• Justice (article 13)
• Living independently and being included in the community (article
19)
• Information and communication services (article 21)
• Education (article 24)
• Health (article 25)
• Habilitation and rehabilitation (article 26)
• Work and employment (article 27) - human resource policies and
practices
• Adequate standard of living and social protection (article 28)
• Participation in political and social life (article 29)
• Participation in cultural life, recreation, leisure and sport (article 30)

一般原則:
可及性
• 重要的賦權及融合的方法
• 是個基本原則也是個獨立條款 (第九條)
• 必須保證以下得取權:
• 公正司法權 (第十三條)
• 獨立生活，融入於社區 (第十九條)
• 資訊及通訊服務 (第二十一條)
• 教育 (第二十四條)
• 健康 (第二十五條)
• 適應訓練和康復 (第二十六條)
• 工作和就業 (第二十七條) – 人資政策和辦法
• 適足的生活水平和社會保護 (第二十八條)
• 參與政治和公共生活 (第二十九條)
• 參與文化生活、娛樂、休閒和體育活動 (第三十條)

79

General Principles:
Non-discrimination
• Fundamental principle of international human rights law
• Includes direct and indirect discrimination
• reasonable accommodation must be made for persons
with disabilities
• reasonable accommodation: ‘necessary and appropriate
modification and adjustments not imposing a disproportionate or
undue burden, where needed in a particular case, to ensure to
persons with disabilities the enjoyment or exercise on an equal
basis with others of all human rights and fundamental freedoms’

一般原則:
不歧視
• 基本國際人權法規原則
• 包括直接和間接的歧視
• 為身心障礙者提供合理便利
• 「是指在根據具體情況，在不造成過度負擔的情況下，按需要進行必要
的適當修改和調整，以確保身心障礙者在與其他人平等的基礎上享有或
行使所有人權和基本自由。」 (第二條)

80

Monitoring and Implementation
All activities must include the participation of persons with
disabilities:
‘Nothing about us without us’

監督與執行
所有的活動必須有身心障礙者的參與:
「有關我們的事，不能沒有我們參
與」

81

Arduin was:
 An institute for 360 residents with
insufficient quality of care in several
respects
 Course of action: emancipation and self-
determination positively adopted as
fundamental in order to secure the best
possible quality of life
 Transition from ‘providing a total care
service’ towards ‘offering the support that
the client desires’

過去的Arduin:
 一個 360人的大型機構，許多方面欠缺
服務品質
 行動方針: 實現解放及自我決策為基本原
則，落實最好的生活品質
 由「提供完整照護服務」轉變成「提供
個案所想要的支持服務」

82

 Arduin was transformed from an institution to a new
community-based organization
 Action plan based on a quality of life focus and the
supports paradigm
 Supporting each individual who in the first place
himself or herself determines what he or she needs
 Creative solutions: e.g. Children from the day-care
centre go to regular schools in the neighbourhood with
support of support-workers from Arduin: inclusive
education
 “Common if possible, special what has to be…”
The deïnstitutionalisation process:

 Arduin 由一個大型機構轉變成一個新的社區本
位服務組織
 行動計畫的基礎是生活品質及支持模式
 個案決定自己的需求，提供他所決定的支持服
務
 創新的對策: 例如Aruin的支持人員陪同孩子在
一般社區裡學校融合式學習: 融合式教育
 「盡可能採用一般性支持」，「必須時才採取
特別化支持」
去機構化的過程:

83

Arduin became:
•A community-based organization:
 24-hours support : 535 persons
 Adult Day care : 180 clients
 Day care for children: 25, but all places are in
inclusive education
 1200 workers
 over 150 houses in 25 villages and cities
 Full-time work / day care for everyone
 Academy for Quality of Life; over 150 courses for
all clients and workers

現在的Arduin :
一個社區本位的組織:
24小時支持: 535人
成人日間支持服務: 180人
兒童日間支持服務: 25人，完全融合式教育環境
1200名工作人員
150多個家，位於25個鄉鎮
每個人都有全時日間工作或活動
生活品質學院；提供個案與員工150多門課程

84

Important factors in OrganizationalTransformation
I. In the proces of Deinstitutionalization, but
then….
Arduin is not ready yet!
II. In the continuous process of adjusting to new
developments

組織變革之要素
I. 去機構化的過程中…
Arduin 尚未預備好!
II. 過程中不斷的調整，面對新的發展

85

I. Factors in the deïnstitutionalisationprocess:
Qualityof life as leading principle
• The separation between the three life spheres—accommodation, daily
activities, and leisure—is fundamental
• A clear focus on quality of life and on the supports-paradigm during the
program changes.
• Every decision, at the organizational level as well as at the level of the
individual client, had to contribute to the personal outcomes of the clients.
• The eight QOL domains were used as guidelines in the transformation of the
organisation
• Staff who were trained to work in an institution are not trained to work in
supporting people in community based working and living situations:
therefore a new education for this profession was suggested and implemented
• In this consequential focusing on QOL and supports sometimes a lot of
creative thinking was necessary
• There is no “yes, but…”

I. 組織變革之要素:
生活品質為優先原則
• 區隔生活中的三個領域 – 住宿、日間活動、休閒
• 方案變革時清楚的聚焦於生活品質及支持模式
• 無論在組織或是個人層級，每個決策都必須對個案的個人成果有
益處
• 採用生活品質的八大領域為組織變革的方針
• 機構式服務工作人員所得到的訓練不適用於社區式的服務，因此
針對此提供新的員工訓練。
• 因為生活品質及支持成為新焦點，我們必須有許多創新的想法
• 沒有「是的，但是…」

86

Quality of Life (Schalock, 2007):
• a multidimensional concept
• influenced by personal and environmental factors and the
interactions between them
• evaluating on the base of subjective and objective indicators
• the quality of life for people with handicaps/ disabilities
involves the same factors and relations that are important to
everyone,
• quality of life is enhanced by enabling people to participate
in decisions that concern their own existence,
• accepting people in their own local community and
integrating them totally enhances quality of life.

生活品質 (Schalock, 2007):
• 多重構面的概念
• 有個人及環境因素及他們之間相互作用的影響
• 藉著主觀及客觀指標來評估
• 身心障礙者生活品質的要素與所有人都相同，同樣重要，
同樣關係
• 生活品質能藉者人們參與決定自己生存相關之事而提升
• 接納並使他完全的融合在自己的社區中能提升生活品質

87

Three factors and eight domains in Quality of Life
(Schalock, 2007;Wang et al., 2010)
• Independence
• Personal Development
• Selfdetermination
• Social Participation
• Interpersonal Relations
• Social Inclusion
• Rights
• Well-being
• Emotional Well-being
• Fysical Well-being
• Material Well-being

生活品質三大要素及八大領域
(Schalock, 2007; Wang et al., 2010)
• 獨立
• 個人發展
• 自我決策
• 社會參與
• 人際關係
• 社會融合
• 權利
• 福祉
• 情緒福祉
• 身體福祉
• 物質福祉

88

QualityManagement
• Evidence based
• Focusing, in quality management, on QOL instead of
quality of care
In a quality of care:
• perspectives of staff and facility are usually more influential than perspectives of
the clients.
• value-based evaluation is less popular.
• The quality of care system gives no guarantee that existing knowledge about good
predictors for quality of life, such as social inclusion, self-determination and personal
development, are implemented (van Loon & Van Hove, 2001).
• one frequently finds an emphasis on impairment,categorization, homogenous
grouping, health and safety, and control (De Waele & Van Hove, 2005).
• the main concern for quality of care strategies is typically the process (Maes et al.,
2000).
• This focus on the process allows organisations to invest a lot of time and energy in their
own (management) structures and arrangements,

品質管理
• 實證本位
• 聚焦於品質管理，於生活品質，而非照護品質
照護品質:
• 人員及機構的觀點比個案的觀點有影響力
• 價值觀為本位的評估比較不受歡迎
• 照護品質服務體系不能保證落實採用現今對提升生活品質的認知，包括社
會融合、自我決策、個人發展(Van Loon & Van Hove, 2001)
• 重點常放於缺陷、分類、同類分組、健康與安全、掌控 (De Waele &
Van Hove, 2005).
• 照護品質觀點重視過程 (Maes et al., 2000).
• 重視過程讓組織投入許多經費及精神在他們自己的管理架構及規劃

89

QOL Factor QOL Domain Exemplary QOL Indicators
Independence Personal Development
Self-Determination
Education status, personal skills,
adaptive behavior (ADLs IADLs)
Choices/decisions, autonomy,
personal control, personal goals
Social Participation Interpersonal Relations
Social Inclusion
Rights
Social networks, friendships,
social activities, interactions,
relationships
Community
integration/participation,
community roles, supports
Human (respect, dignity, equality)
Legal (legal access, due process)
Well-Being Emotional Well-Being
Physical Well-Being
Material Well-Being
Safety & security, positive
experiences, contentment, self-
concept, lack of stress
Health Status
Nutritional Status
Recreation/Physical Exertion
Financial status, employment
status, housing status, possessions

生活品質要素生活品質領域生活品質指標範例
獨立個人發展
自我決策
教育狀況、個人技能、適應性
行為 (ADLs, IADLs)
選擇、決定、自主、個人掌控
能力、個人目標
設會參與人際關係
社會融合
權利
社交網絡、朋友、社交活動、
關係、互動
社會融合、參與、社區角色、
支持
人權 (尊重、尊嚴、平等)
司法 (法律途徑，正當程序)
福祉情緒福祉
身體福祉
物質福祉
安全與保障、正面體驗、滿意
度、自我概念、無過大壓力
健康狀態、營養狀態、休閒運
動
經濟狀況、就業狀況、居住狀
況、擁有物

90

The practice of self-
determination
Leading principle in support:
Everyone can make important
decisions in his / her life (with the
support of a personal assistant)
Option of accommodation: the
housing bureau
Option of work: the vacancy bank
The practice of personal
development
Learning by experience:
Participating in the community
Academy on QOL:
Focused on emancipation and
self-determination
The practice of inclusion:
Normal houses for all clients
Foster families for children
Work or daily activities in
companies and daycentres
in the community
The practice of supports:
People live in an house where
they want to live themselves and
work where they want to work
themselves and get the supports
they subsequently need.

實踐自我決策
支持的主要原則:
每個人都可以做自己生命中重要
的決定 (有個人助理的協助)
居住選擇: 房舍局
工作選擇: 職缺銀行
實踐個人發展
從經驗中學習:
參與在社區中
生活品質學院:
聚焦於解放和自我決策
實踐融合
所有的個案居住於一般的房舍
小孩有寄養家庭
工作或日間活動在社區裡的公司
或活動中心
實踐支持:
住在自己想要住的房子，做自己
想要的工作，得有需要的支持

91

Work / Daily activities companies and centres
in the community

社區中的工作及日間活動中心

92

Centres for daily activities for
people with severe intellectual disabilities

重度障礙者活動中心

93

Die Akademie für Qualität
des Lebens
Academy for Quality of Life

Die Akademie für Qualität
des Lebens
生活品質學院

94

Experiences with deinstitutionalisation in
several studies
• Improvement of adaptive skills
• The vast majority of parents, although concerned before, is
satisfied after the move into the community. Before the
move a vast majority was negative.
• People with intellectual disabilities are more present in the
community
• They have a larger variety of activities in community
• They have more to choose and do effectively choose more
• Family visits their relatives more often
Experiences in Arduin confirm these findings!

去機構化經驗研究
• 適應性行為提升
• 絕大多數家長對搬遷到社區後的服務滿意，雖然搬遷前
大多數有負面反應
• 更多智能障礙者融入在社區中
• 他們參與更多種類社區中的活動
• 他們選擇更多，因此也做了更多選擇
• 家人互相拜訪次數也增加
Arduin的經驗也證實以上研究結果!

95

For example: The vast majority of parents, although concerned
before, is satisfied after the move into the community. Before the
move a vast majority was negative.
• Studies in Arduin show:
• The families of the clients are in general positive
with regard to the quality of the supports: over
81% is satisfied; over 21% is very satisfied.
• Parents are positive with regard to behavior and
personal functioning: clients are more independent,
more dynamic, less tense, and more satisfied.
• Parents and staff find the Quality of Life much
improved.

例如: 絕大多數家長對搬遷到社區後的服務滿意，雖然搬
遷前大多數有負面反應
• Arduin的研究發現:
• 大多數個案的家屬對支持服務品質滿意: 81%滿
意，21%非常滿意
• 家長對個人行為及功能有正面回饋: 個案更獨立、
更活潑、較不緊張、更滿意
• 家長及工作人員感受到生活品質的改善

96

The findings as reported in several studies inArduin concerning
the improvement of live functioning of individuals can be
summarized as follows:
• Clients improved in adaptive skills: clients are more independent,
develop new skills or pick up old skills
• Persons show personal growth in their new environment, in
personality, social skills and other skills; applies also to older clients
• Clients have more self-esteem
• Clients seem to live more in society then they did before
• Most clients are very satisfied with the leisure activities and
friendships
• Different and more daily activities; better quality of daily activities
• More self-determination / increase in clients‘ participation
• Aggression and behavioural problems decreased
• Feeling of safety increased
• Less challenging behaviour
• Quality of living / accommodation improved / more privacy

Arduin 針對個人生活功能改善的內部研究報告結論:
• 個案適應性行為提升: 個案更獨立、發展新技能或重新開始運用
舊的技能
• 在新環境中成長，個人特質、社交技巧、其他技能，年長個案也
不例外
• 個案自尊心提升
• 個案在社會中更活耀
• 更多個案對他的休閒活動及朋友關係滿意
• 更多與不同的日間活動: 更高品質的每日活動
• 更多自我決策，提升個案的參與
• 攻擊性及其他行為問題減少
• 安全感提升
• 減少挑戰性行為
• 居住品質提升，更加隱私

97

Short films on Arduin: 4 and 3 minutes:
https://www.youtube.com/watch?v=4beu3ELwe
0w&feature=youtu.be
https://www.youtube.com/watch?v=qO_nwAkrV
9M

Arduin 短片: 4 和 3 分鐘:
https://www.youtube.com/watch?v=4beu3ELwe
0w&feature=youtu.be
https://www.youtube.com/watch?v=qO_nwAkrV
9M

98

II. Adjusting to new developments
• With the UN Convention on the Rights of People with
Disabilities (CRPD) comes a need for evidence-based
instruments that help in the promotion of these rights.
• Verdugo, Navas, Gomez and Schalock (2012) found a close
relationship between the QOL domains and the Convention
Articles; these Articles can be evaluated assessing indicators
associated with the eight QOL domains.
• This means that indicators for good quality of an
organisation, that wants to conform to the articles of the
CRPD, should in the first place be (evidence based)
outcome based indicators, linked to the quality of life of the
clients. Inputs and processes as well as personal outcomes and
program or organization outputs should be related to QOL.

II. 針對新的發展而調整
• 有了聯合國身心障礙者權利公約(CRPD)就必須有一個具實
證本位的評量工具來提倡這些權利
• Verdugo、Navas、Gomez 和 Schalock (2012) 研究發現
生活品質的八大領域和公約的條文有高度的關聯性，可藉
與生活品質領域相關的指標來評量公約條文的落實程度
• 這表示一個期望符合CRPD條約的高品質組織首先必須結合
組織品質指標與個案生活品質指標，輸入、過程和輸出，
個人、方案和組織層級，都必須與生活品質 (QOL) 有關。

99

Relationbetween the domains of QOL and the articles of
the UN Convention for People with Disabilities
(Verdugo,Navas, Gomez and Schalock,2012)
• Domain QOL Applicable Articles UN
Convention
• Personal Development 24
• Self-Determination 14, 19, 21
• Interpersonal Relations 23
• Social inclusion 8, 9, 18, 20, 27, 29, 30
• Rights 5-7, 10-13, 15
• Emotional Well-being 16, 17
• Physical Well-being 16, 25, 26
• Material Well-being 28

生活品質(QOL)和UNCRPD條文之間的關係
(Verdugo, Navas, Gomez and Schalock,2012)
• 生活品質領域相關的公約條文
• 個人發展 24
• 自我決策 14, 19, 21
• 人際關係 23
• 社會融合 8, 9, 18, 20, 27, 29, 30
• 權利 5-7, 10-13, 15
• 情緒福祉 16, 17
• 身體福祉 16, 25, 26
• 物質福祉 28

100

System of Supports
• Important for improving Quality of Life: an essential
organizational strategy involves incorporating consumers in
meaningful roles.
• Arduin developed an Individualized (person centered)
Supports System
• The outcomes of an individual supports plan for a person should
be an enhanced quality of life. Determining whether this
outcome occurs, requires the reliable and valid assessment of
QOL-related domains. E.g. with the Personal Outcomes Scale
(POS, van Loon et al. 2008)
• Central element in a support methodology is the dialogue with
the person.

支持系統
• 對提升生活品質很重要: 一個必要的組織策略，包括讓消費
者擔任有意義的角色
• 「有關我們的事，不能沒有我們參與」
• Arduin發展了一個個別化(以個人為中心)的支持系統
• 個別化支持計畫執行的結果應該是生活品質的提升，要確
認是否有成果必須有一個有信度及效度，評量生活品質相
關領域的工具，例如個人成果量表 (POS, van Loon et al.
2008)
• 支持辦法的核心要素是與個案對話

101

An Individual SupportsPlan should:
• Explore goals and personal perspectives: what does a person
want in his life
• Explore what support a person needs and wants: which supports
are important for and which are important to the person
• Formulate support strategies in answer to the personal goals,
wants and needs
• Monitor in dialogue with the person the process of support
• Measure personal outcomes
• Comprise an ongoing system of fine-tuning and adjusting
• Use evidence based practices in doing so
• Be transparent and comprehensible for the person

一個個別化支持計畫應:
• 探索個人的觀點及目標: 他在自己的生命中想要什麼
• 探索個人所想要及所需要的支持: 什麼是對他及為他重要的
支持
• 針對他個人目標、想望和需求，擬定支持策略
• 與個案對談，一起監督支持過程
• 評量個人成果
• 建構一個持續調整及改善的系統
• 採用實證本位實作
• 面對個案時要透明化及容易理解

102

How it was:
A Map with the care-plan
A meeting amongst
Professionals
The professionals decided
How it is:
A Personal Plan, internet-
based
Dialogue with the clients
What do you want? How
do you want it?
The Personal Plan
From a “care-plan” to a Personal Plan

以前是…
照護計畫地圖
專業人員會議
專業人員做決定
現在是…
一個線上個人計畫
與個案對談
你想要什麼? 你想要怎
麼做?
個人計畫
從一個「照護計畫」轉變為一個「個人計畫」

103

What do you need to know if you want to
support a person in a good way?
 …..
 ……..
 ……..
 ……..
 …….
 ……..
Important Questions:

要正確的支持一個人時，你需要知道
什麼?
 …..
 ……..
 ……..
 ……..
 …….
 ……..
重要的問題:

104

Ánd…What should be the outcome of the
support you offer a person?
 …..
 …..
 …….
 …….
 ……

和… 你支持一個人時應該達到什麼成
果?
 …..
 …..
 …….
 …….
 ……

105

Component 1
Wishes, personal aspirations and goals:
structured interview with the client
Component 2
2.a. Determining Support Needs: to ánd for the person
e.g. Interview with Supports Intensity Scale
2.b. if needed: additional diagnostics / assessment
Component 3: Developing an Individual Supports plan
a. The client (with his personal assistant) synthesize the wishes and goals with the support needs
and come to an idea for an individual support plan: how do I want to be supported?
b. This idea is discussed with the supportworkers /professionals (and the psychologist).
c. Together they decide on a ISP on which support the
person wants so he can fully participate in the community.
Component 5: Monitoring
Dialogue with the cliënt
To what extent are goals
and wishes realised?
Does the person get the support
he / she needs?
Component 6 : Evaluation of the Individual Support Plan
Measuring QOL by measuring Personal Outcomes with the POS
Component 4
Implementation
Those involved in the support of the person: the
natural network and the professional supportworkers

要件一:
界定期望的生活經驗與目標:
與個案結構性的訪談
要件二:
2a 決定支持需求: 對他與為他
支持強度量表訪談
2b 若需要，使用其他評估工具
要件三:發展個別化支持計畫
a. 個案(個人助理協助) 使用生活品質的資訊, 期待的生活經驗與目標,
與SIS的結果, 來界定在生活品質的架構中的支持需求.
b. 與支持人員、專業人員及心理學家討論支持需求
c. 團隊一起擬定個別化計畫, 支持個案徹底融入在社區中
要件四: 執行
支持提供者:自然支持網絡、專
業支持服務人員
要件五: 監督
與個案交談
他的目標成就
了多少?
他有得到
他所需
的支持嗎?
要件六: 個別化支持需求計畫評估
採用POS評量個人成果，檢視生活品質

106

The perspectives, wishes and goals the person has in his /
her life.
 Establishing wishes, dreams, personal aspirations,
goals by an ongoing dialogue with the client and his
or her family, or other people who know the person
well.
 With as guide for this dialogue the eight QOL
domains plus the corresponding items of the Supports
Intensity Scale
 The scores of the POS give an input for this dialogue
 The qualitative remarks of the POS interview give an
extra input
Component 1

個人的觀點及他自己生活的想望和目標
 藉由與個案、家屬或其他熟識他的人的對話，確
立個人想望、夢想、抱負、目標。
 採用生活品質八大領域和相對照的支持強度量表
題項為基準。
 個人成果量表(POS)分數可為此對話之依據。
 POS訪談的質化紀錄可提供其他細項資訊。
要件一

107

Determining the support needs
 Determine the Support Intensities with the Supports
Intensity Scale (SIS), regarding the nine support areas:
Home living, Community living, Lifelong learning,
Employment, Health and safety, Social activities,
Protection and Advocacy Activities, Exceptional Medical
Needs and Exceptional Behavioral Support Needs
 An interview with the client and his / her family and the
personal assistant (every three years)
 Prioritize: what is important for, and what is important to
the person
Component 2

決定支持需求
 採用支持強度量表 (Supports Intensity Scale)，九個
支持領域中評量支持需求: 居家生活、社區生活、
終生學習、就業、健康與安全、社會活動、保護
與倡議活動、特殊醫療需求、特殊性為支持需求
 訪談個案、他的家人和個人助理 (每3年一次)
 排序: 什麼是為他重要，什麼是對他重要
要件二

108

Component 3 The ISP
• Eight domains,
• and within each domain
 the corresponding desired life experiences and goals ánd
 the support needs
are the framework for an ISP.

要件三: 個別化支持計畫
• 八大領域
• 領域中…
• 所想之生活體驗和目標
• 支持需求
個別化支持計畫的架構

109

QOL Domain SIS item
Personal Development A1 - A8 (Home Living)
C1 - C6 (Lifelong Learning)
Protection &Advocacy 2
Self-Determination C 8 (Lifelong Learning)
Protection &Advocacy 1, 5 & 7
Interpersonal Relations B4, B7 (Community Living)
D3, D4 (Employment)
F1 - F7 (Social Activities)
Social Inclusion B1, 2, 3, 5, 6, 8 (CommunityLiving)
F8 (Social Activities)
Rights Protection &Advocacy 3, 4, 6, 8
Emotional Well-being C9 (Lifelong Learning)
E8
Exceptionals Behavioral support needs
Physical Well-being C7
E1 - E7 (Health and Safety)
Exceptional Medical Support Needs
Material Well-being D1, 2, 5, 6, 7, 8 (Employment)
Correspondence between SIS-items and QOL domains:

生活品質領域 SIS 題項
個人發展 A1 - A8 (居家生活)
C1 - C6 (終生學習)
保護和倡議 2
自我決策 C 8 (終生學習)
保護和倡議1, 5 & 7
人際關係 B4, B7 (社區生活)
D3, D4 (就業)
F1 - F7 (社會活動)
社區融合 B1, 2, 3, 5, 6, 8 (社區生活)
F8 (社會活動)
權利保護和倡議3, 4, 6, 8
情緒福祉 C9 (終生學習)
E8 (健康與安全)
特殊行為支持需求
身體福祉 C7 (終生學習)
E1 - E7 (健康與安全)
特殊醫療支持需求
物質福祉 D1, 2, 5, 6, 7, 8 (就業)
SIS題項與生活品質八大領與之對照

110

Component 6
Evaluationof the Individual Support Plan
•Measuring QOL by measuring Personal Outcomes with
the POS
•Gives at the same time important input for component
1

要件六
個別化支持計畫評估
•採用POS評量個人成果，檢視生活品質
•提供給要件一重要資訊

111

Personal Outcomes Scale
for Adults
POS-A
Jos van Loon, Ph.D.
Claudia Claes, Ph.D.
Robert Schalock, Ph.D.
Geert van Hove, Ph.D.
Version 2.0
2013
Measuring Outcomes with the

個人成果量表
成人版
POS-A
Jos van Loon, Ph.D.
Claudia Claes, Ph.D.
Robert Schalock, Ph.D.
Geert van Hove, Ph.D.
Version 2.0
2013
評量成果

112

Self-Report
1. To what degree are you able to feed yourself, get up and down, use the toilet, and dress yourself?
Generally Independent With Assistance Can’t Do
On My Own
2. To what degree are you able to prepare meals, keep house, move around on your own, take medication?
Generally Independent With Assistance Can’t Do
On My Own
3. Are you learning skills to do more things, or do you follow courses / are you engaged in some type of
education?
Many Some Few, if any
4. Do you have an opportunity to demonstrate skills you have?
Frequently Sometimes Seldom or never
5. Do you have access to information that you are interested in: e.g.newspaper, magazine/ journal, internet,
library?
Considerably Somewhat Seldom or never
6. Do you use a computer, a cell phone, or a calculator?
Qualitative Comments(E.g. What is important for your life, what personal goals do you have for your life,
what is needed to improve your quality of life and what is needed to improve the supports you receive?)

領域：個人發展
個人發展是指有關你的教育(包括終身學習)，與個人能力(包括學習與技能的展現)。在完成題項前，
你可以先思考下列幾個面向：
1. 學習你有興趣的事情
2. 學習技能能讓你更獨立
3. 有能力照顧自己
4. 有能力追求你自己的興趣
5. 有管道獲得資訊
自我報告
1. 你可以自己吃喝進食、起床/上床、使用廁所與穿衣嗎？
一般都可獨立完成需要一些協助自己無法做到
(包含使用輔具完成)
2. 你可以自己準備餐食、完成家事、隨意行走與服藥嗎？
3. 你有在學習一些讓自己可以更能幹、做更多事的技能，或是上一些可以學習更多新的想法、作法
或知識的課程嗎？(不限定地點)
很多一些如果有，很少
4. 你有機會可以表現你的技能嗎？(不限定地點)
常常有時偶爾或從來沒有
5. 如果想要使用時，你是否有方法獲得你有興趣的資訊？（例如報紙、雜誌/刊物、網路、圖書館）
相當多有些偶爾或從來沒有
(想要的資訊都有管道可以取得)
6. 你有使用電腦、手機、或是計算機嗎？(著重在使用一般電子用品，不侷限於列出的項目)

質性描述 (例如什麼是你人生重要的，什麼是你的生活目標，要改善你的生活品質與所得到的支持需
要什麼？)

113

Report of Others
1. To what degree does the person have control over what to wear, what to eat, places to go, etc.?
Considerable Some Little or none
2. When presented with choices, to what degree does the person exercise them?
3. To what extent does the person makes decisions that are important to him /her —even though it might not be
what others want?
Considerably Somewhat Seldom or never
4. To what degree are the decisions made by the person respected (regardless of the specific decision)?
Greatly respected & followed Respected somewhat Not respected
5. To what degree does the person control at least some portion of their money?
Considerable control Some control No control
6. To what degree does the person have the opportunity to express what he/she wants?
Always Sometimes Seldom or never
Qualitative Comments (E.g. What is important for the person’s life, what personal goals do es he or she has
for his or her life, what is needed to improve his or her quality of life and what is needed to improve the supports
he or she receives?)

個人發展是指有關個人的教育(包括終身學習)，與個人能力(包括學習與技能的展現)。在完成這些他人
報告題項前，你可以先透過回答下列幾個問題，來收集與個人發展相關的個人資訊：
客觀性衡量
1. 個人現在有上課或從事某些學習嗎？
2. 個人有看報紙或雜誌/刊物嗎？
3. 個人有去圖書館嗎？
4. 個人有電腦或他有使用電腦嗎？
他人報告
1. 你會如何評估個人操作每日生活活動、自己吃喝進食、起床/上床、使用廁所與穿衣呢？
2. 你會如何評估個人操作例行生活活動：準備餐食、完成家事、隨意行走與服藥呢？
3. 你覺得在過去的 6～12 個月，個人所學的技能或是學習更多新的想法、作法或知識的經驗如何呢？
(不限定地點)
很多一些如果有，很少
4. 個人有多常可以表現他/她的技能（例如職場、學校或家裡）？
5. 如果想要使用時，個人是否有方法獲得他/她有興趣的資訊（例如報紙、雜誌/刊物、網路、圖書
館）？
相當多有些偶爾或從來沒有
(想要的資訊都有管道可以取得)
6. 個人有多常在使用輔助科技？(著重在使用一般電子用品)

質性描述(例如什麼是個人人生中重要的，什麼是個人的生活目標，要改善個人的生活品質與所得到的
支持需要什麼?)

114

Example of a report of a POS-interview (self-report)

115

116

Three levels in an ISP
• A comprehensive ISP based on a complete overview of
wishes, goals and support needs
• A meaningfull selection for daily supports, to be used by
support workers, based on high support needs, healty and
safety, and wishes and goals of the person
• A meaningfull 1-page overview for the person, based on
his wishes and goals, and corresponding supports

三個階層的ISP
• 一個完整的ISP，包含所有的想望、目標、支持需求
• 篩選後之支持人員每日所操作的支持清單，根據高支
持需求項目、健康與安全、個人目標與想望而定
• 一個為個人設計，有意義的一頁計畫，根據他的想
望、目標及相關支持需求而定

117

Uses of the POS include
(Besides the most important: the use in an ISP to improve
individuals QOL )
•Measuring Personal Outcomes gives valuable management
information
•And is important to do research e.g. to study predictors in QOL

POS的用途包括
(除了最重要的用途: 在ISP內，為了提升個人生活品質)
•測量個人成果能提供寶貴管理資訊
•對研究有重要幫助，例如生活品質預測因素的研究

118

Using Evidence Based Outcomes on an
organizationallevel
• The data collected in the interviews with the Personal Outcomes
Scale are aggregated to give Evidence Based Outcomes
information regarding the individual, organization program, or
the organization as a whole (Van Loon et al., 2012).
• QinO tool

在組織層級使用實證本位成果資訊
• 彙整個人成果訪談中所得之資料，產出相關個人、組織方
案、或組織整體的實證本位成果資訊 (Van Loon et al., 2012).
• QinO 工具

119

Comparing interviews of clients in 2014 with
interviews of same clients earlier

一個個案2014年和其他年度平均分數的比較

120

Qualitative Information
• Per QOL domain
• With corresponding / Applicable Articles UN Convention
• Based on 164 interviews

質化資訊
• 每一個生活品質領域
• 對照相關聯合國公約條文
• 根據164個訪談

121

Domain QOL Applicable Articles UN Convention
Personal Development 24
生活品質領域相關聯合國公約條文
個人發展 24

Self‐Determination 14, 19, 21
自我決策 14, 19, 21

122

Social inclusion 8, 9, 18, 20, 27, 29, 30
社會融合 8, 9, 18, 20, 27, 29, 30

Rights 5‐7, 10‐13, 15
權利 5‐7, 10‐13, 15

123

Emotional Well‐being 16, 17
情緒福祉 16, 17

Physical Well‐being 16, 25, 26
身體福祉 16, 25, 26

124

Material Well‐being 28
物質福祉 28

Comparing POS results
last interview with earlier
interview: total
organization
POS結果比較: 最近一次
訪談和之前的訪談:組織
整體

125

interview: Men
訪談和之前的訪談: 男性

interview: women
訪談和之前的訪談: 女性

126

Example: 20- 30 year 範例: 20-30歲
014
014
014 014
014
015
011
014
014
013
014 014
013
015
010
014
0
2
4
6
8
10
12
14
16
Emotioneel
welbevinden
Interpersoonlijke
relaties
Materieel
welbevinden
Persoonlijke
Ontwikkeling
Lichamelijk
welbevinden
Zelfbepaling Sociale inclusie Recht
zelfbeoordeling
geobjectiveerde beoordeling

Example: 61- 70 year 範例: 61-70歲
15.163
12.184
14.551
11.612
14.796
12.837
8.755
12.837
15.204
11.551
14.449
11.531
14.041
12.429
8.449
13.265
.000
2.000
4.000
6.000
8.000
10.000
12.000
14.000
16.000
Emotioneel
welbevinden
Interpersoonlijke
relaties
Materieel
welbevinden
Persoonlijke
Ontwikkeling
Lichamelijk
welbevinden
Zelfbepaling Sociale inclusie Recht
Zelfbeoordeling Geobjectiveerde beoordeling

127

The POS in research
• Research can be done into the predictors of QOL e.g.
by correlating the outcomes on the POS with other
variables that are documented within an organization,
such as supports strategies, environmental factors and
client characteristics.
• Claes et al., 2011*: QOL-outcomes were significantly
impacted by the availability of support strategies,
living arrangement, status of employment and level of
ID
• *Claes, C., Van Hove, G., Vandevelde, S., van Loon, J., & Schalock, R.L. (2012). The Influence of
Supports Strategies, Environmental Factors, and Client Characteristics on Quality of Life-Related
Personal Outcomes. Research in Developmental Disabilities 33 (2012) 96-103

POS的研究
• 生活品質預測要素相關研究，例如POS的成果與組
織內其他所記錄之變數的關聯性，如支持策略、環
境因素、個案特質等。
• Claes et al., 2011*: 支持策略的得取、居住安置、就
業狀態、知能障礙的等級等因素，重大的影響生活
品質成果。
• *Claes, C., Van Hove, G., Vandevelde, S., van Loon, J., & Schalock, R.L. (2012). The Influence of
Supports Strategies, Environmental Factors, and Client Characteristics on Quality of Life-Related
Personal Outcomes. Research in Developmental Disabilities 33 (2012) 96-103

128

How ‘living arrangement’impactedQOL-scores
• Independent from the level of intellectual functioning:
• Mean total QOL score for people living 24-hours supervised
(M=108,30, SD = 10,12) was significantly different than the
score reported for people living independently (M=117,91 SD
= 10,13).
• The ‘living in a small apartment condition’ (M= 105,76 SD =
7,81) did not differ significantly from living with 24-hours
supervised arrangement.
Claes et al., 2011:

「居住安置」如何影響生活品質分數
• 與智能程度獨立:
• 24小時照護居住者:
• QOL總分平均值 (M = 108.30, SD = 10.12)
• 獨立居住生活者:
• QOL總分平均值 (M = 117.91, SD = 10.13)
• 明顯的差別
• 小團體公寓式居住環境:
• QOL總分平均值 (M = 105.76, SD = 7.81)
• 和24小時照護居住者無明顯差別
Claes et al., 2011:

129

How ‘Statusof employment’impactstotal QOL
outcomes
• Regardless of the level of intellectual functioning:
• The mean total QOL score for people having a paid job (M=
117,27 SD = 2,47) or doing a volunteer job extern (M = 122,71
SD = 4,71) was significantly different than the scores reported
for people having only day-activities (M=104,45 SD =9,85) or
working in Arduin not paid (M=109,44 SD = 10,43).
• There were no significant differences between having a paid job
and doing a volunteer job; or between doing only day-activities
and working not paid in Arduin.
Claes et al., 2011:

「就業狀態」如何影響生活品質分數
• 與智能程度獨立:
• QOL總分平均值
• 有付薪工作 (M = 117.27, SD = 2.47)
• 志工性質工作 (M = 122.71, SD = 4.71)
• 與只有日間活動或在Arduin內無薪工作者差別很大
• 只有日間活動 (M = 104.45, SD = 9.85)
• Arduin內無薪工作(M = 109.44, SD = 10.43)
• 有薪資與志工差別不大，日間活動與Arduin內無薪工作的差
別也不大。
Claes et al., 2011:

130

Conclusion
•Beside client characteristics, support strategies and
environmental factors explain a significant amount of variance in
QOL outcomes !
•Importance regular environments
•Importance of individualized support strategies
•Strengths-based approach
• Focus on development in each QOL-domain
• System of support based on individual’s potential, intentions
and personal goals
Claes et al., 2011:

結論
•個案特質以外，支持策略及環境因素能解釋許多生
活品質成果的差異!
•一般性環境很重要
•個別化支持策略很重要
•能力本位的方法
• 聚焦於發展每一個生活品質領域
• 根據個人潛力、意願、目標發展的支持系統
Claes et al., 2011:

131

Disability vs. no disability
110.234
101.792
103.250
101.706 102.694 103.400
127
130
127.717 128
130
124
80
85
90
95
100
105
110
115
120
125
130
135
<30 31-40 41-50 51-60 61-70 >71
POS-Index 指數- Age年齡
clients of Arduin people with no intellectual disability
有障礙 VS. 無障礙

An evidence-based self-assessment approach to
organizationevaluation and organization change
• Despite the use of the supports paradigm and the QOL concept,
there was a need to look at both evidence-based indicators based
on best practices, and a wider perspective on performance-
evaluation and management.
• For that purpose the Organization Effectiveness and Efficiency
Scale (OEES; the Scale) was used.
• Based on the results of this OEES assessment a Quality
Improvement Plan was developed which included e.g. 1) a
strategy to be developed in which data that were collected were
more structurally combined, analyzed, evaluated and discussed,
and 2) a study to be done into the possibilities of current assistive
technology devices and strategies..

132

一個實證本位
自我評估的組織評量與組織變革辦法
• 雖然使用支持理念架構及生活品質概念，仍然需要檢視最佳
實作為依據的實證指標，和視野更寬闊的績效及管理評量。
• 因此採用組織效益效率量表 (OEES; 量表)。
• 根據OEES評估的結果發展了一個品質改善計畫
1) 發展更具結構性的策略，實踐資料蒐集、整合、分析、評估、及檢
討。
2) 研究目前輔助科技裝置及策略的發展性。

OEES

133

ORGANIZATION EFFECTIVENESS AND EFFICIENCY SCALE:
A Systematic Approach to Enhancing Organizational Outcomes
International Research Consortium on Evidence-Based Practices (2013)
(www.oeesonline.org)
Organization Members:
Arduin Foundation-The Netherlands (Jos van Loon and Kees Swart)
Bob Schalock and Associates (Bob Schalock)
INICO-University of Salamanca Spain (Miguel Verdugo)
Qi Zhi Vocational Training Center-Taipei, Taiwan
(Chun-Shin Lee and Tim Lee)
University College-Gent University-Belgium (Claudia Claes)

134

顧客
成長
財務
內部運作

References
• Claes, C., Van Hove, G., Vandevelde, S., van Loon, J., & Schalock, R.L. (2012). The Influence of Supports Strategies,
Environmental Factors, and Client Characteristics on Quality of Life-Related Personal Outcomes. Research in Developmental
Disabilities 33 (2012) 96-103
• De Waele, I., Van Loon, J., Van Hove, G. & Schalock, R. (2005). Quality of Life versus Quality of Care: Implications for People and
Programs. Journal of Policy and Practice in Intellectual Disabilities. 2(3/4), 229-239
• Van Loon J.H.M. & Van Hove, G. (2001). Emancipation and self-determination of people with learning disabilities and down-sizing
institutional care, Disability & Society. 16(2), 233-254.
• Van Loon, J., Knibbe, J. & Van Hove, G. (2005). From institutional to communitysupport: Consequences for medical care. Journal
of Applied Research in Intellectual Disabilities. 18(2): 175-180.
• Van Loon, Jos, Claes, Claudia, Vandevelde, Stijn, Van Hove,Geert, Schalock, Robert L., (2010) Assessing Individual Support
Needs to Enhance Personal Outcomes. Exceptionality, 18:1–10, 2010
• Van Loon, Jos H.M., Bonham, Gordon S., Peterson, Dale D., Schalock, Robert L., Claes, Claudia, Decramer,Adelien E.M. (2012).
The Use of Evidence-Based Outcomes in Systems and Organizations Providing Services and Supports to Persons with
Intellectual Disability. Evaluation and Program Planning, 36 (2013), pp. 80-
87. http://dx.doi.org/10.1016/j.evalprogplan.2012.08.002
• Van Loon, J. (2006). Los Apoyos en Arduin. Sobre las diversas facetas de los apoyos y la implemetacion de la Escala de
Intensisdad de Apoyos (SIS) en una organizacion de servicios. Siglo Cero. 37(4), 17-34
• Van Loon, J. (2015). Planes Individuales De Apoyo: Mejora De Los Resultados Personales Siglo Cero. 46 (1), 25-40
• Van Loon J.H.M., Van Hove, G. and Schalock, R. (2009) The use of SIS data / items for the development of an individual supports
plan. In: Schalock, R. & Thompson, J. The SIS Implementation Guide. Washington, DC: American Association on Intellectual and
Developmental Disabilities.
• Van Loon, J.H.M. (2005). Arduin. Emancipation and Self-determination of People with Intellectual Disabilities. Dismantling
Institutional Care. Leuven–Apeldoorn: Garant.
• Van Loon, J., van Hove, G., Schalock, R. L., & Claes, C. (2008). Personal Outcomes Scale: A Scale to Assess an Individual’s
Quality of Life. Middelburg, The Netherlands, Stichting Arduin and Gent, Belgium: University of Gent.
• International Research Consortium on Evidence-Based Practices (2013) ORGANIZATION EFFECTIVENESS AND EFFICIENCY
SCALE MANUAL: A Systematic Approach to Enhancing Organizational Outcomes (www.oeesonline.org)
• Van Loon, J. (2012). Five Key Factors in One Organization’s Permanent Change. In: Schalock, R.L., Verdugo, M.A.(2012). A
Leadership Guide for Today’s Disabilities Organizations. Overcoming Challenges and Making Change Happen. Paul H. Brookes
Publishing Co., Inc.: Baltimore

135

(四) 日本去機構化的特色
Characteristics of Deinstitutionalization In Japan
講師：渡邊勸持翻譯：高靖翔國立台北大學研究生校譯：劉素芬國立台北大學助理教授
Characteristics of
Deinstitutionalization
In Japan
Kanji Watanabe
(Research Fellow, Institute for community living,
Mimasaka University)
30th September 2015 Taipei
我要住在社區獨立生活是我的權利
日本去機構化的特色

30th September 2015 Taipei
我要住在社區獨立生活是我的權利
Characteristics of deinstitutionalization in Japan

136

Part Ⅰ My Experience
why I became interested in deinstitutionalization?
Part  Ⅱ Characteristics of the  deinstitutionalization
of Japan: a  comparison with western countries,
forerunners of the deinstitutionalization
Part Ⅲ Toward the future
Why the process of deinstitutionalization in Japan is
still slow and delayed

Part Ⅰ 我的經驗
我為什麼對去機構化感興趣?
Part  Ⅱ 日本去機構化的特色:
與西方國家去機構化先驅之比較
Part Ⅲ 迎向未來
為什麼去機構化在日本的進程仍然緩慢而停滯?

137

Why was I interested in
the deinstitutionalization of persons
with intellectual disabilities ?
Part Ⅰ
My Experience

為什麼會對智能障礙者的去機構化感興
趣呢?
Part Ⅰ
我的經驗(My Experience)

138

I worked for 27 years since
1974 at the research institute
which is located in Aichi
Prefecture Colony, a large
social and medical service
centre for people
with intellectual disability.
Aichi Prefecture
Aichi Prefecture Colony

1974年起，我在一間位
於愛知縣的研究機構工
作了27年，這是一間以
研究智能障礙者為主的
大型社會與醫療服務中
心。
Aichi Prefecture
Aichi Prefecture Colony

139

Children profound(極重
度兒童）
成人急重區
(Adult severe)
和緩型的成人(Adult Moderate)
兒童急重區
(Children Severe)
學校
(School)
醫院
(Hospital)
職業訓練學校
(School)
親子諮詢
(Guidance For mothers)
研究中心(Research center)
招待所(Guest House)
教育、醫療設施
住宿型機構設施
1970

ｄあｄみにｓｔらちおｎ
醫院
(Hospital)
管理部門
administration)
1970
研究中心(Research Institute)

140

● 休息室 Day Room
■ 教室 Class Room
▲ 餐廳 Dining Hall
■
▲
外部導向行為 Outer directed Behavior
（％）
グループ Ⅳ
■
▲
■
▲
●
●
●自
我
刺
激
行
為
SelfSimulative
Behavior
（
％
）
不同環境對智能障礙兒童的影響
Responses of children with ID to different environment（1974～
1976）
Group 1
Group 2
Group 3
Group 4
Group 5

１９７６
I realized something was wrong with my approach.
I thought I was treating them.
But it was not the children who should be treated,
but the society which create these institutions.
The social model was a new viewpoint of handicap
I learned then.

141

１９７６
從我的研究取向中意識到事情不妙之處
以病理方式對待他們
但是他們並不該被病理化，這是社會所創造出來的
社會模式是障礙的新觀點

１９８１
醫生(medical doctor)
護士 Nurse
(full-time staff)
照服員 Direct care staff
(person with disability)

142

入所施設
家族と
学生ホーム
自分の家
里親
家族と
入所施設
グループ
ホーム
K City in
Japan（１９８５）
East-west District in
Stockholm （１９８７）
Comparison of residential
service in JAPAN and SWEDEN
Residential
institution
with
Families
with
Families Residential
InstitutionsFoster
Parents
His/her own house
Student homes
Group
Homes

入所施設
家族と
学生ホーム
自分の家
里親
家族と
入所施設
グループホ
ーム
K City in
Japan（１９８５）
East-west District in
Stockholm （１９８７）
日本與瑞典居住服務比較
機構安置
家庭照顧
家庭照顧
機構安置
寄養家庭
他/她自己的家
學生宿舍
團體
家屋

143

Comparison with western countries,
forerunners of the deinstitutionalization
Part Ⅱ
Characteristics of
the deinstitutionalization
of Japan:

與西方國家去機構化先驅之比較
Part Ⅱ

144

A comparison with 4 advanced countries
Number of people in institutions
(per 100,000 population)

與4個先進國家之比較
住
在
機
構
量
(
每
10
萬
人
)

145

Residential Institutions have
increased from 1950 to 2000.
and finally the number seems to
decrease at present.
But speed is very slow.
Why ?

住宿型機構(教養院)數量於1950
年攀升至2000年，之後機構數量
顯示有減少，但速度很緩慢。
為什麼 ?

146

Assumed Reasons (interdependent factors)
Historical, Physical, Economical, Political, Social Background
1. Comparatively new Institutions (less than 40 years )
2. Comparatively small and less segregated
3. Poor policy of the government
4. Economic  development
Cultural, Psychological  Background
5. The low awareness of  the Normalization  and
the human right  for persons with intellectual  disability
6. Group‐oriented, Family‐oriented society

假設成因(相互依賴的因素)
歷史、物理、經濟、政治、社會背景
1. 相對較新的機構 (40年以下 )
2. 相對較小且隔離少
3. 政府貧窮政策
4. 經濟發展
文化、心理背景
5. 對智能障礙者的正常化和人權認知不足
6. 團體取向、家庭取向

147

Institutions are only 40 years old
Assumed reason (or excuse?) 1Assumed reason (or excuse?) 1
假設成因 (或理由?) 1
機構只有40歲

Number of people in institutions
Institutions in Japan increased after 1960s
1960年後日本機構成長
機
構
數
量

148

Norway
Japan
Numberofpeopleininstitutions
(per100,000population)
Year
residential institutions appeared in 1950s
1950年住宿型機構(教養院)出現
住
在
機
構
量
(
每
10萬
人
)

Our institutions are
not so segregated and
not so big
as the ones in western countries

149

假設成因(或理由)1假設成因(或理由)2
我們的機構
不需要隔離
不用如此大型
像西方國家一般

社區住宅區
教養院(Residential institutions)
1970

150

兒童教養院(Residential institutions for children) １９７４
教養院(Residential institutions)

Size of residential institutions
Number of institutions
Settings
住宿型機構的規模
機
構
數
量

151

People living in a room (2014)
同住的人數 (2014)

“House and work place are very close to each other.
Furthernore, several persons shared a room, and
there were no personal space and privacy.
Working place seemed to me like a classroom rather than
place for work. “
Mr. Neirje visited Japan in 1998, and he spoke of his impression

152

“居住空間和工作的地方都非常相似，
此外，數個人共用一個房間，
沒有個人的空間和隱私。
工作環境在我看來，像一個教室，而不是工作場所。 “
Mr. Neirje 於1998年參訪日本，他談及他的印象

Poor policy of the government
假設成因(或理由)3
政府的貧窮政策

153

(Convention on the Rights of Persons with Disabilities)

Japan
Japan is No.1 in keeping the hospital beds
for persons with mental disorders.

154

Japan
日本在精神障礙者保留病床方面占第一位

National
Government
control system for Group
Home
- cheap and safe？ -
Institutions watch and control
group homes and dispatch
direct‐care staff
The tax goes to service providers
with Regulations

155

國家政府
團體家屋的控制系統
- 便宜又安全？ -
機構觀察、團體家屋、一線照服員
稅收服務提供者條例

① helps residential institutions to survive
This Centralization system
② maintains staff‐centered approach
③ discourages grass‐root movement for changing
the system for the people in the community
④ makes the wall against people in community
Small‐scaled community care is
needed to promote the GH or social
service in terms of self‐choice and
determination.

156

① 有助於教養院的生存
集中化體制的效應
② 維持以工作者為中心取向
③ 不利於社區中人們對改變體制的草根運動
④ 製造社區中人與人的對立
小規模的社區照顧是必要的，
以促進團體家屋或社會服務的
自我抉擇層面。

The relationship with
economic development
假設成因(或理由)4
和經濟發展的關係

157

Year
No. of people in institutions
mean
mean
mean
Real economic growth rate
in Japan

Year
mean
mean
mean
住在機構的人數
實際經濟增長率
in Japan

158

Denmark
Sweden
Finland
Norway
Netherlands
Israel
Iceland
Belgium
Luxembourg
Spain
Switzerland
Australia
New Zealand
United Kingdom
Poland
Austria
Ireland
Slovenia
Estonia
OECD ‐ Total
Hungary
Czech Republic
Germany
Portugal
Slovak Republic
Italy
France
United States
Japan
Greece
Canada
Chile
Korea
Turkey
Mexico
Percentage of GDP of
expenditure on
disability- related benefits
2011 (OECD)
%
國內生產毛額的百分比
與障礙相關的利益支出
2011 (OECD)

We need more budget for group homes
from two nationwide surveys (2012,2013)
・ Over 75% of Caretakers are part‐time worker
・ Almost 60% are over 50s or 60s years old
・ Turnover rate is around 4 year
・ Inexperienced in the field of personal service
Staff …..more professional needed
House… more space, money to subsidy for rent,
Direct‐care staff
In 2006, government introduced a new system for person
with severe disability that permits 10 residents at a GH.

159

團體家屋需要更多的預算
從2次全國性的調查 (2012,2013)
・超過75% 的照服員都是兼職人員
・近60% 是超過50歲或60歲者
・大約4年的流動率
・在個別服務領域上缺乏經驗
工作人員…..需要更專業
家屋… 更多空間、現金補助租金
第一線的照服人員
在2006年政府針對重度障礙者引進新的系統，
由10位住民入住團體家屋。

Group‐oriented, Family‐oriented rather than  Individual‐
oriented
The low awareness to  the human right  for persons
with intellectual  disability
Cultural, Psychological  Background
Concerning to reason 5 & 6, I would like to introduce
a research which analyzed remarks of direct‐care staff
attending the group discussions at the training course
to brush up their daily support.

160

團體導向、家庭導向，不是個別化取向
智能障礙者人權被漠視、弱化
文化、心理背景因素
對於5和6的理由，我想介紹一個研究，這個研究
的分析來源為照服員在訓練課程的團體討論中有
關支撐其日常生活的陳述

Participants, most of them
are housewifes raising
children over, were
devided 6 groups , each
group containing 6 to 8
staff.
The training was conducted to change the
attitude of direct‐care staff for person‐
centered approach(PCP). Analysis of the
words of staff in the discussion clarified the
typical attitude of direct‐care staff that
interferes with PCP.
.

161

參加的主要照顧者大部分
是家庭主婦，分成6組，每
組由6~8人所組成
此次培訓改變直接照服員以個人為中心取向
（PCP）的態度。分析照服員在討論中的話，PCP
會干擾直接照服員的典型態度。

The
1. We are family members
2. As my role is like their mother,
I have to teach them.
3. The harmony of the members
should be regarded than
individual need
Direct‐care
staff
Typical attitude of direct‐care staff to residents
Direct‐care staff bring pressure to the members
with her/his attitude or value that is often typical
for ordinary people. One example is “You are
better to say YES to be accepted by people “

162

The
1. 我們就像一家人
2. 我的角色類似母親的功能，
我必須教導他們。
3. 成員彼此間的和諧應比個別
需要被重視
Direct‐care
staff
照服員對待住民的典型態度
第一線照顧服務員的態度或價值會帶給成員壓
力。換句話說”你想被接受最好就說是”

Part Ⅲ
Toward the future
迎向未來

163

邊緣化
(marginalization)
毒氣室

We have made progress since the beginning of the
20th century deinstitutionalization movement・・・・・
Institute on Community Integration University of Minnesota
AAIDD Presidential Address, 2014 Amy Hewitt

164

自20世紀以來去機構化運動已有所進展
Institute on Community Integration  University of Minnesota

This journey is not over.
Today, ‘‘institution’’ is
about attitude,
it is about control,
it is about lack of choice,
it is about lack of respect,
it is about lack of opportunity,
and it is about lack of relationships and being  IN
the community but NOT a part OF the community
We need at the forefront of this 21st century
deinstitutionalization movement.

165

這段旅程尚未結束
今天, ‘‘機構’’ 是關於態度,
是關於控制,
是關於缺乏選擇,
是關於缺少尊重,
是關於缺少機會,
是關於缺乏人際關係和在社區之中
非社區的一部分。
21世紀我們當前最需要的是去機構化運動

1. People recognize GHs as a necessary social resource.
2. People’s awareness increased of the human right and
the community living of persons with intellectual disability.
3. New association of GHs is established that is managed
by persons with intellectual disability and supporters.
Year
Number of people
We are still in the process of deinstitutionalization, but
at least we have accomplished followings,

166

1. 意識到團體家屋是必要的社會資源
2. 意識到提升人權與智能障礙者社區生活
3. 新的團體家屋協會成立了，並由智能障礙者和支持者共同
管理
Year
Number of people我們仍在去機構化的階段，但至少已完成下列幾項成果

Thank you for your listening

167

(五)社區融合：重要尚待完成的工作
Community Inclusion: Ruling but Unfinished Task
講師：崔鳳鳴博士翻譯：張淑娟心路基金會
Community Inclusion: Ruling but
Unfinished Task
Cui Fengming
Harvard Law School Project on Disability

社區融合：
重要尚待完成的工作
崔鳳鳴
哈佛法學院身心障礙者方案

168

Main Topics
I. Ideological Background
II. Core Issues of Deinstitutionalization in the
U.S.A
III. Relevant Legal Reform
IV. Existing Challenges

大綱
I. 理論背景
II. 美國去機構化的核心議題
III. 相關的法律改革
IV. 現有的挑戰

169

I. Ideological Background
• Conceptual Evolvement from Mental
Retardation (MR) to Intellectual and
Developmental Disabilities (ID & DD)
• Models of Disability Thinking
1. Individual Model
2. Social Model

I. 理論背景
• 概念上的演變，從心智遲緩(MR)到智能與
發展障礙(ID & DD)
• 障礙的思維模式
1. 個人模式
2. 社會模式

170

Where Is the Problem?

問題在哪呢?

171

The Individual Model
• Justified by the personal tragedy theory
1. Views disability as a problem within the
individual;
2. Defines disability as stemming from functional
and/or psychological losses
• Significantly Influenced by medical aspects
1. View disability as illness
2. Inappropriate involvement of medical
professionals for fixing the problem

個人模式
• 正當化個人悲劇理論
1. 視障礙為個人本身的問題;
2. 將障礙界定為功能上/或心理上的缺失
• 深受醫療觀點的影響
1. 視障礙為疾病
2. 為了要將問題修理好，因而納入了一些不適當
的醫療專業人員。

172

The Social Model
• Doesn’t deny disability but locates it within
society;
• Problems related to disability are caused by social
and attitudinal barriers rather than Individual
limitations;
• The consequences of failure in society
systematically fall on persons with disabilities as a
group;
• Institutionalized discrimination throughout
society

社會模式
• 不否認障礙，視其存在於社會;
• 障礙的相關問題源自於社會上與態度上的藩籬，
而非個人的限制;
• 社會體制的失敗肇因於將障礙視為是一個特殊
的群體;
• 社會充滿著制度性的歧視

173

The Influence of Disability Models
• On law and policy making and implementation
• On public disability rights awareness
• On service and resource allocation and
infrastructure development

障礙模式的影響
• 在法律與政策制定及執行上
• 在障礙權利的公眾意識上
• 在服務與資源分配及基礎建設發展上

174

II. Core Issues of
Deinstitutionalization in the U.S.A.
• Definitions
• Key truths for deinstitutionalization
• The Goal
• Populations Trends
• Strategies

II. 美國去機構化的核心議題
• 定義
• 去機構化的關鍵事實
• 目標
• 人口趨勢
• 策略

175

Definitions
• “Institution” by National Council on Disability
(NCD) according to number of people in a
facility
• “Institution” by advocates that focuses on
quality of life and control issues

定義
• 全國障礙者協會(NCD)對“機構”的定義是根
據機構的人數而定
• 倡議者對“機構”的定義是著重在生活品質
以及有關掌控權的相關議題

176

NCD Definition
• NCD has defined “institution” as a facility of
four or more people who did not choose to
live together.
• It raises the standard and continues the trend
toward smaller, more intimate housing
situation for people with ID/DD.

全國障礙者協會的定義
• “機構”是4位或4位以上的障礙者沒有選擇
的生活在一起.
• 提出標準且持續朝向更小、更切合智能與
發展障礙者的居住服務趨勢

177

Advocates’ Definition
Institutions as places that‐‐‐
• Include only people with disabilities
• Include more than three people who have not chosen to live together
• Do not permit residents to lock the door to their bedroom or bathroom
• Enforce regimented meal and sleep times
• Limited visitors, including who may visit and when they may do so
• Restrict when a resident may enter or exit the home
• Restrict an individual’s religious practices or beliefs
• Limit the ability of a resident to select or remove support staff
• Restrict residents’ sexual preferences or activity
• Require residents to change housing if they wish to make changes in the personnel
who provide their support or the nature of the support
• Restrict access to the telephone or internet
• Restrict access to broader community life and activities

倡議者的定義
機構是一個‐‐‐
• 只有障礙者
• 是超過三位障礙者沒有選擇的生活在一起
• 他們的寢室或浴室是不准鎖上的
• 強制且固定的用餐與就寢時間
• 限制訪客,包括可以探訪誰以及什麼時候可以探訪
• 限定住民出入的時間
• 限制個人的宗教或信仰
• 限制住民選擇或解除支持人員
• 限制住民的性喜好與活動
• 如果想要更換提供支持的工作人員或支持的內容, 便要求住民搬家
• 限制打電話或使用網路
• 限制更寬廣的社區生活與活動

178

Key Truths for Deinstitutionalization
• Civil rights issue
• Dignity provided in the community
• Benefits
1. Increased quality of life for people with ID/DD
2. Cost savings for the government
3. The opportunity to provide services to people
who are currently not served in institutions

去機構化的關鍵事實
• 公民權議題
• 社區的尊重
• 優勢
1. 提升智能與發展障礙者的生活品質
2. 節省政府的成本
3. 有機會提供服務給尚未接受機構服務的障礙者

179

The Goal
• The goal of deinstitutionalization is to move
people with ID/DD out of segregated
institutions to inclusive lives in the community
with services and supports.

目標
• 去機構化的目標是將智能及發展障礙者從
隔離的教養院搬到社區，在服務與支持下
在社區融合的生活著。

180

Population trends
• Reduced population in institutions
• Increased population with more severe ID/DD
in community services

人口趨勢
• 降低在機構的人口數
• 增加更重度的智能及發展障礙在社區服務
的人口數

181

Strategies for Successful Transition
• Two steps
1. Creating a healthy community based system
2. Committed to quality assurance as an ongoing
process
• A vision and comprehensive agenda
• Willingness and focused efforts
• A Platform and principles

成功轉銜的策略
• 兩個步驟
1. 創造一個以健康社區為本位的體制
2. 對品質保證的承諾，視其為持續不斷的過程
• 願景及全面通盤的議程
• 意願以及集中努力
• 平台與原則

182

IV. Relevant Legal Reform
• 1961  Joint Commission report Action for Mental Health;
• 1963  Mental Retardation Facilities and Community Mental Health Center
Construction Act enacted;
• 1965  Community Mental Health Centers Construction Amendments
authorizing staffing funds for Community Mental Health Centers;
• 1965  Medicaid and Medicare Enacted;
• 1980  Mental Health Systems Act enacted;
• 1988  Fair Housing Act amended to include persons with disabilities;
• 1990  Americans with Disabilities Act enacted;

IV. 相關的法律改革
• 1961 聯合委員會發表心理健康行動報告;
• 1963  頒布心智障礙機構設施與社區心理健康中心建築法規;
• 1965  社區心理健康中心建築法規修正, 授權社區心理健康中心的人員
配置經費;
• 1965 制定聯邦醫療保險與醫療補助;
• 1980  頒布心理健康系統法案;
• 1988  公平住宅法修正納入障礙者;
• 1990  頒布美國身心障礙者法案;

183

V. Existing Challenges
• Misconceptions that Justify institutionalization
1. improving material conditions of institutions;
2. Serving “difficult to serve” populations;
3. Severity of disability;
4. Cost comparison by setting
5. The outcome of community living
• Appropriate services for persons with severe ID/DD
• Lack of medical care and services and inadequate training for professionals and service
providers to serve the population
• Inadequate wage and benefit supplies for support personnel to keep staff
• Priority and bias issues of the government
• Systematic barriers to the development of community based services

V. 現有的挑戰
• 將機構合理化的誤解
1. 改善機構的物理環境;
2. 服務 “困難服務”的人口;
3. 障礙的嚴重度;
4. 不同類型的成本比較
5. 社區居住的成果
• 適合極重度智能及發展障礙者的服務
• 缺乏醫療照顧與服務，以及專業人員與服務提供者接受的訓練並不適
當。
• 支持工作人員的薪資與福利無法留住工作人員
• 政府的優先順序考量與偏見問題
• 發展以社區為本位服務在體制上的阻礙

184

Closing Thoughts
結論

185

(六)身心障礙者權利公約中的社區居住與獨立生活
Living Independently in the Community in the CRPD
講師：Janet E. Lord 翻譯：江尚書前社會住宅推動聯盟政策組主任
Living Independently in the
Community in the CRPD
Janet E. Lord, Harvard Law School Project
on Disability
1Janet E. Lord, Harvard Law SchoolProject on Disability

身心障礙者權利公約 (CRPD)
中的社區居住與獨立生活
Janet E. Lord, 哈佛法學院身心障礙者計畫

186

OUTLINE
1) Common barriers to living
independently and in the
community
2) CRPD and standards on living
independently and in the
community
3) Strategies for enhancing
inclusion and participation in
the community for persons
with disabilities

大綱
1) 獨立生活及社區居住的共同阻
礙
2) 身心障礙者權利公約 (CRPD) 及
獨立生活與社區居住的標準
3) 增進身心障礙者融入及參與社
區的策略

187

Barriers to Living in the
Community
 Attitudes & negative myths and stereotypes about what living
arrangements are best for persons with disabilities;
 Lack of training for family members, caregivers and on appropriate
care;
 False belief that institutional living will protect persons with
disabilities;
 Resistance to change;
 Financial systems favor institutional living over community living;
 Services (medical care or rehabilitation) available to others locally
only available to persons with disabilities in institutional setting;
 The lack of an adequate standard of living may force persons with
disabilities to live in a segregated institutional setting or with
family members for survival reasons, such as access to food;
 The lack of accessible housing may greatly reduce the choices
available to persons with disabilities who want to live in a
particular community.
5

社區居住的阻礙
 哪種居住安排對身心障礙者最好的一些態度、負面迷思及
刻板印象；
 缺乏對家庭成員、照顧者的訓練，也缺乏有關合適照顧的
訓練；
 錯誤相信機構居住可以保護身心障礙者；
 抗拒改變；
 財務體系偏好機構居住勝於社區居住；
 一般人可獲得的地區性服務 (醫療照顧或復健)，障礙者卻
只能在機構環境中獲得；
 缺乏適當的居住標準，可能迫使障礙者居住於隔離化的機
構環境，或為了生存理由，像是獲得三餐，而與家庭成員
居住，
 缺乏無障礙住宅，會大大減少障礙者居住在特定社區的選
擇。
6

188

Janet E. Lord, Harvard Law SchoolProject on Disability 7


189

Rights Issues for Persons with
Disabilities
 Institutional placement in segregated setting deprives persons
with disabilities with the opportunity to live in family setting;
 Denial of the right to education, among other human rights;
 Forcing persons with disabilities to live in segregated settings
deprives them of the opportunity to participate fully in the
social, cultural, and political life of their community.
 Institutional settings can often expose persons with disabilities
to a higher risk of violence, sexual abuse, and even death,
especially women and girls with disabilities and persons with
intellectual disabilities.
 Segregated settings may also deprive persons with disabilities
of the opportunity to exercise their right to marry and have a
family
 Risk of continual medical treatments, some painful and
unnecessary;
 Denial of the right to participate in decisions that affect their
lives.
9

身心障礙者的權利議題
 將障礙者安置於機構的隔離環境中，剝奪他們居住
於家庭環境的機會；
 受教育的權利及其它人權遭到否定；
 迫使障礙者居住於隔離化的環境中，剝奪他們完整
參與社區中的社會、文化及政治生活的機會。
 機構化的環境常使障礙者曝露於暴力、性侵、甚至
死亡的高風險中，特別是身心障礙的女性及女孩，
還有智能障礙者。
 隔離化的環境可能剝奪障礙者行使結婚權利與組成
家庭的機會；
 持續接受醫療的風險，其中有些是痛苦且不必要的；
 參與那些會影響他們生活決策的權利遭到否定。
10

190

 Article 19 of the CRPD, on living
independently and in the community,
reflects an extension of the right to
liberty, namely, the freedom to choose
one’s own living arrangements.
 CRPD embraces for the first time in an
international human rights treaty, the
right to community integration.
 Article 19 is directed at the elimination of
segregated, congregate and socially
isolated environments in which persons
with disabilities have historically been
forced, or obliged, to live.
11

 CRPD第19條是有關獨立生活與社區居住，
反映了自由權的延伸，亦即選擇自己居住安
排的自由。
 身障公約擁抱融入社區的權利，也是國際人
權公約中的第一個。
 第19條指向要消除隔離、聚居及社會孤立的
環境，這也是身心障礙者在歷史上被迫或不
得不這樣生活。
12

191

Article 19: Interpretation consistent with
CRPD General Principles & Obligations
For example:
Right of equality & non-discrimination
Duty to provide reasonable
accommodation to persons with disabilities
(necessary and appropriate adjustments not
imposing a undue burden)
Participation & inclusion
Accessibility: Measures must be taken to
ensure access to the physical environment,
transport, information and communications,
and other facilities & services provided to
the public.

第19條：符合身心障礙者權利公約的一般性
原則及義務的解釋
例如：
 平等與不受歧視的權利
 提供障礙者合理便利條件的責任 (在
不造成過度負擔的情況下，提供必要
與適當的調整)
 參與及包容
 無障礙：採取措施，確保能接近自然
環境、交通、資通訊及其它提供給公
眾的設施與服務。

192

Case Examples: Sweden
 Right to personal assistance was established by legislation.
 Cash payments system creates a competitive market consisting of
about 15,900 assistance users (who support for more than 20 hours
a week), 230 local governments and over 1,100 private entities.
 System employs a 60,000 (full-time equivalent) personal assistants.
 Sweden’s citizens with high support needs no longer need to live in
institutions to receive services; they choose where and how to live.
 The law enables assistance users and their family members to
return to work and has improved quality of life for assistance users
and their families who need less for services such as home helper,
respite care, special transportation, etc.
 Provides jobs to people who might otherwise live on
unemployment.
 Saved taxpayers estimated € 3 billion since 1994, compared to the
costs municipal home helper services.

案例：瑞典
 獲得個人協助的權利乃由法律所確立。
 現金支付系統創造出競爭性的市場，由大約15,900個受
協助者 (每周接受支持超過20小時者)、230個地方政府
及超過1,100個私人單位所組成。
 這個系統雇用60,000位 (以全職時數計) 的個人助理.
 對高強度支持有需求的瑞典公民再也不需要為了接受服
務而居住在機構中；他們可選擇住在哪裡及怎麼生活。
 這條法律讓受協助的使用者及他們的家人可以回到工作
崗位，也讓他們的生活品質得以提升，其它服務的使用
量可以減少，如居家照顧、臨時護理、特殊交通等。
 提供工作給那些原本可能處於失業的人。
 自1994年以來，相比於市政府提供的居家照顧服務，節
省納稅人約30億歐元。

193

Case Examples: US Supreme
Court Case
 In 1999, the Supreme Court of the United States
ruled that requiring persons with disabilities to
live in institutions in order to access services
constitutes illegal discrimination under the
Americans with Disabilities Act. The Olmstead
decision requires public entities to provide
services and conduct activities in the most
integrated setting appropriate to the needs of
qualified individuals with disabilities.
 Source: Olmstead v. L.C., 527 U.S. 581, 119 S.Ct. 2176 (1999).

案例：美國最高法院
 1999年，美國最高法院裁定，要求障礙者
居住在機構中以接受服務會構成《美國身心
障礙者法》的違法歧視。Olmstead決議要
求公家單位在最佳融合環境中提供服務、進
行活動，讓條件符合的身心障礙者可以使用
。
 Source: Olmstead v. L.C., 527 U.S. 581, 119 S.Ct. 2176 (1999).

194

Case Examples: European
Court of Human Rights
 Mental Disability Advocacy Center alleged that children
with intellectual disabilities living in Bulgarian “Homes
for Mentally Disabled Children” received no education
because of their disability AND that the Bulgarian
Government violated Article E of the Revised European
Social Charter by discriminating based on disability.
 Facts disclosed that only 6.2% of children from “Homes
for Mentally Disabled Children” receive schooling.
 The ECSR held that Bulgaria discriminated against
children with mental disabilities by denying them their
right to education.
 Source: MDAC v Bulgaria, Complaint No. 41/2007, European
Committee of Social Rights, Decision of 3 June 2008.

案例：歐洲人權法院
 心智障礙倡議中心指控，居住在保加利亞「心
智障礙兒童之家」的智能障礙兒童僅因他們的
障礙情況便沒有接受教育，也指控保加利亞政
府基於身心障礙而歧視，違反修訂版的歐洲社
會憲章第E條。
 事實顯示，「心智障礙兒童之家」中僅有6.2%
的兒童接受到學校教育。
 歐洲社會權利委員會 (ECSR) 認為保加利亞因
為拒絕心智障礙兒童的受教權利而構成歧視。
 Source: MDAC v Bulgaria, Complaint No. 41/2007,
European Committee of Social Rights, Decision of 3
June 2008.

195

Article 19: UN High
Commissioner for Human
Rights CRPD Study
 Shift of government policies away from institutions towards in‐
home, residential, and other community support services.
 Legal recognition of right of persons with disabilities to determine
where and with whom to live.
 Legal acknowledgement that arrangements for residential care
cannot be made against the wishes of a person with a disability.
 De‐institutionalization must be pursued through:
 A legislative framework which clearly establishes community living as a
legal right and places duties on authorities and service providers.
 Access to legal recourse in case of violation.
 Right to access the support services required to enable independent
living and inclusion in community life.
 Guarantees that independent living support should be provided and
arranged on the basis of the individual’s own choices and aspirations.

第19條：聯合國人權事務高級
專員的CRPD研究
 政府政策遠離機構，而轉向居家、住宅及其它社區支
援服務。
 法律認可身心障礙者有權決定要在哪裡居住及與誰一
起居住。
 法律承認居家照顧的安排不可違反身心障礙者的意願
。
 去機構化必須透過下列方式來追求：
 明確的立法架構，確立社區居住的法律權利，明訂有關當局及服務
提供者的責任。
 在遭受暴力時可獲得法律資源。
 有權獲得讓他們能獨立居住及融入社區生活的必要支援服務。
 確保獨立生活的支援措施是基於個人的選擇及意願來提供與安排。

196

Some Resources on Article
19 Implementation
 ZERO Project, Innovative Practices on Independent Living,
http://zeroproject.org/practice-type/innovative-practices-2015/
 Office of the High Commissioner for Human Rights, Thematic Study by
the Office of the United Nations High Commissioner for Human Rights
on enhancing awareness and understanding of the Convention on the
Rights of Persons with Disabilities, 26 January 2009,
http://www.ohchr.org/EN/HRBodies/CRPD/Pages/DayGeneralDiscussion
21102009.aspx
 Common European Guidelines on Deinstituionalization,
http://deinstitutionalisationguide.eu/wp-content/uploads/2012-12-07-
Guidelines-11-123-2012-FINAL-WEB-VERSION.pdf
 Camillia Parker and Luke Clements, The European Union and the Right
to Community Living Structural Funds and the European Union’s
Obligations under the Convention on the Rights of Persons with
Disabilities,
https://www.opensocietyfoundations.org/sites/default/files/europe-
community-living-20120507.pdf

有關落實公約第19條的一些資
源
 ZERO計畫，獨立生活的創新實踐，http://zeroproject.org/practice-
type/innovative-practices-2015/
 人權事務高級專員辦公室，聯合國人權事務高級專員辦公室為強化對身心
障礙者權利公約的意識與理解所做的專題研究，2009年1月26日，
http://www.ohchr.org/EN/HRBodies/CRPD/Pages/DayGeneralDiscussion
21102009.aspx
 歐洲去機構化的共同指導原則，
http://deinstitutionalisationguide.eu/wp-content/uploads/2012-12-07-
Guidelines-11-123-2012-FINAL-WEB-VERSION.pdf
 Camillia Parker與Luke Clements, 歐盟與社區居住權利結構基金及身心障
礙者權利公約之下的歐盟義務，
https://www.opensocietyfoundations.org/sites/default/files/europe-
community-living-20120507.pdf

197

Living rights for individuals with
intellectual disability, a panel discussion
第二屆
台灣智青居住權論壇
議程

198

Living rights for individuals with intellectual disability,
a panel discussion
第二屆台灣智青居住權論壇議程
主持人：賴建中先生/啟智技藝訓練中心
與談人：王婉琳小姐/仁愛基金會
李崇珊小姐/瑪利亞基金會
王唯芳小姐/德蘭啟智中心
廖淨綉小姐/黎明教養院
一、自我介紹，每人 5 分鐘
進行方式：可以口頭報告，也可以準備簡報說明
二、從 POS(個人成果量表)的題目，分別談個人的生活品質。
進行方式：主持人一一提問，與談人選擇是否回答。
1. 請問您有哪些專長？平常有機會表現您的這些專長嗎？
2. 請問您有什麼興趣和嗜好？通常都是從哪裡去得到這些興趣和嗜好的資訊？例如：圖書
館、網路、報紙，或是親朋好友跟你說的等等
領域：自我決策
3. 如果有人要求你，做你不想做的事情，你可以決定不要做嗎？可以跟大家舉例子說明嗎？
4. 對於你自己的錢，你可以想用就用嗎？例如，你可以自己決定要買什麼東西就去買，或者
其實你想買什麼都要跟家人或老師溝通。
領域：人際關係
5. 你對你的家人來說，重要嗎？你有感覺到他們是重視你的嗎？
6. 當你需要幫忙，希望有人給你建議或支持你的時候，你會找誰？他會幫你嗎？請舉例說明。

199

領域：社會融合
7. 當有人需要幫忙時，你會主動幫忙嗎？請舉例說明。
8. 你有參與社區裡的活動嗎？例如，購物、休閒、出去用餐、去教會或是去廟裡拜拜等等。
領域：權利
9. 你覺得你在家裡有自己的空間嗎？這個空間是指可以讓你不被人家打擾，而且想一個人獨
處的時候，別人也會尊重你。
10. 你現在有男朋友或女朋友嗎？如果你想跟你的男朋友在一起，就可以在一起嗎？還是要
經過老師或家人的同意？
領域：情緒福祉
11. 對你現在從事的工作或是生活、訓練等等活動，你覺得有成就感嗎？
(如果沒有，沒成就感的原因是什麼？)
12. 你平常有特別喜歡或是你覺得依賴的人是誰？你覺得你信任他嗎？
領域：身體福祉
13. 你多久運動一次？會做哪些運動？
14. 你會吃對你健康有幫助的食物嗎？例如哪些食物？有天天吃嗎？
領域：物質福祉
15. 你有足夠的錢買你真正需要的東西嗎？
16. 你有足夠的錢來做選擇嗎？例如買你喜歡的牌子，或是比較好看的衣服、鞋子等等。
三、您喜歡住在社區裡嗎？為什麼？
四、您覺得什麼是獨立生活。
五、邀請現場來賓提問。

200

社區居住服務
案例分享
A Presentation of Community Living Services
Examples

201

報告人：社區居住中心林網市
財團法人瑪利亞社會福利基金會
台灣社區居住服務現況
以臺中市為例.
以瑪利亞基金會為例.

台灣的社區居住現況-1
‧2004年，在民間團體的倡議下，內政部提
出了「成年心智障礙者社區居住與生活實
驗計畫」，現已為正式方案，並將此業務
列為地方政府機構考核的項目之一
‧2007年，全台約30個居住家庭
‧2010年，社區居住與獨立生活聯盟調查，
全台共有65個居住家庭

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臺灣的社區居住現況-2
‧2012年，全臺各縣市均相繼辦理，總數近
80個居住家庭，僅基隆、金門、連江尚未
開辦。
‧2015年，全臺共有45個社福組織提供此服
務模式，開辦超過100個社區居住家庭。

臺中市的社區居住服務現況
‧全國最多個社福組織提供『社區居住』服
務模式的城市。〈六個機構團體〉
‧全國最多家『社區居住』家庭.16家
‧全國最友善的城市〈無社區抗爭事件〉
‧全國最勇於追求進步的城市〈2人家庭.到宅
服務〉

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最多社福組織提供服務
‧立達啟能訓練中心〈玫瑰.聖心.若望.若瑟家.自
辦一家〉
‧瑪利亞基金會〈工學.大墩.南屯.工學彩家〉
‧信望愛智能展中心〈潭陽一家.潭陽二家〉
‧向上基金會〈向光.向晴.向馨家〉
‧臺中市智障者家長協會〈彩虹家〉
‧臺中市自閉症教育協進會〈肯納家〉

最勇於追求進步的城市
‧2015年臺中市心智障礙者多元支持社區居
住服務計畫：
★ 2人家庭〈手足同住〉.
★ 到宅服務〈返回原生家庭及租屋獨立居
住〉

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7
7

瑪利亞社區居住中心
– 2008.12 入住工學家~~服務五位女性住民
智能障礙/輕度三位、中度一位、多重重度一位
– 2010.02 入住大墩家~~服務六位男性住民
智能障礙/中度二位、重度一位、極重度二位
– 2011.05 入住南屯家~~服務五位女性住民
智能障礙/輕度一位、中度一位、重度二位
精障/重度一位
– 2014.01 入住工學彩家~~服務四位女性住民
智能障礙/輕度三位、中度一位

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社區住中心組織結構之管理與分工
財團法人瑪利亞
社會福利基金會
瑪利亞社區居住中心
（主任）督導
瑪利亞工學家
專任教保員
社工
瑪利亞南屯家
專任教保員
社工
瑪利亞大墩家
專任教保員
社工
團隊資源：
瑪利亞社會福利基金會
復健專業團隊
瑪利亞工學彩家
專任教保員
社工
團隊資源：
瑪利亞社會福利基金會
財務團隊〈會計出納〉
外部督導

瑪利亞社區居住中心服務現況
支持強度差異
工學彩家~預備獨立生活
工學家~中低支持強度
南屯家~中高支持強度
‧ 大墩家~高支持強度

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住民居住時間之不同
◆ 週間服務〈假日返回原生家庭〉
原生家庭尚有支持功能
◆ 全週服務〈不返家〉
原生家庭失功能

支持服務時間之不同
◆ 夜間全支持.
◆ 16：00~22：00.及隔日06：00~08：00
◆ 16：00~22：00.晨起獨立生活上班.

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服務理念
• 提供社區生活經驗
• 支持自我決策.學習自我負責
• 支持學習生活規畫
• 支持獨立生活

服務對象
(1)中低收入身心障礙者或身心障礙者父母無
力照顧者優先。
(2)十八歲以上，領有身心障礙手冊（以智能
障礙及多重障礙為主）並有社區居住需求
者，並經專業團隊入住評估通過者。
(3)未經政府委託安置於社會福利機構者，惟
日間於社政、勞政或教育單位接受教育或
照顧訓練者不在此限。

208

論文集
Academic Articles

209

Deinstitutionalisation in Norway: the process, challenges and solutions1
挪威的去機構化：過程、挑戰與因應
作者：Christian Boe Kielland
翻譯：高靖翔、張家寧國立台北大學研究生校譯：周月清陽明大學衛生福利所教授
摘要：
本文回顧挪威的去機構化過程，這個過程始於二十年前，並且帶來社區為基礎的服務
(community-based services)的多樣體系。本文概述此一過程，並檢視此變化過程中應設法解決的議題。
過去的體系 (The system that we had)
我們過去有一些大型教養院，以及可容納大約 5 至 10 位住民的新型、小型教養院設置於地方社
區。上述教養院總共容納超過 5 千位住民，另有 2 千人在教養院中接受日間照顧服務。較大型的機構
為「全控型」機構(total institutions)，其提供所有必需的日常生活服務，包含住宿、用餐、個人助理
(personal assistance)、醫療服務、學校、工作以及休閒活動，至於小型教養院當然無法如此自給自足
(self-sufficient)。許多大型教養院設立於較為偏遠或鄉村的區域，由我們的 19 個「縣政府
(regions/counties)2
」負責這些教養院。
450 萬的挪威人中估計有 2 萬人為心智障礙，大部分的心智障礙者通常與家人或其他親戚同住在
當地，並沒有接受教養院的服務。在當時，幾乎沒有孩童被准許進入教養院，地方政府 (municipal
authority) （備註：municipality 如我鄉鎮或區級，如日本的市町村，在縣政府之下，北歐國家的地方
政府指 municipality。）提供的服務也時常有不足之處，因此我們的改革同時也包括讓地方政府
(municipalities)3
能針對未獲得所需協助的民眾提供服務。地方政府的服務之所以有不足之處的其中一
個原因，在於教養院和地方政府之間的權責並未清楚劃分。
一個新體系(The new system)
為了使心智障礙者的生活盡可能接近其他人，心智障礙者應被提供其所需的協助。每個人皆有權
在一般公寓或房子享有他/她個人的住所，相關服務應由提供其他使用者類似服務的對象來提供，意思
是這些基礎服務應由我們超過 4 百個的地方政府所提供，而不是來自 19 個縣政府。(挪威地方政府的
平均規模是包含 1 萬個居民；半數地方政府涵蓋不足 5 千個居民)。相關服務提供也應依據每個人的
個別特定需求，而不是根據同住的群體。縣政府和服務其他民眾的服務提供者應提供個別化的服務，
教養院則應被關閉。

1
Christian B Kielland, 2010. “Deinstitutionalisaztion in Norway: the process, challenges and solutions”. Tizard Learning Disability Review, 15(4),
15-21.
2
翻譯參考：周月清(2005)。〈挪威「智能障礙者從教養院搬回社區生活」改革方案－挪威參訪報告〉。社區發展季刊，109，514‐521。
3
同註解 2。

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為何我們想要如此？(Why we want this?)
如同我所記得，挪威的社會政策思想和其他國家並沒有太大差異。許多人認為「開放式照顧(open
care)」或「社區照顧(community care)」，或不論使用哪一種詞彙，這樣的方式有別於傳統教養院，能
夠提供年長和年輕的障礙者更好的居住與生活情境(living condition)：依自己喜好安排日常生活的自
由，相較於由教養院工作人員執行日常生活的實際工作(practical tasks)，如此生活更為積極活躍。這
樣的想法源自於科學研究和思想意識的著作，以及許多人的自身感覺和觀察。大部分的人不喜歡將障
礙孩童或衰弱長輩送至缺乏人情味機構這樣的想法，機構似乎無法提供他們未來自身所想要的環境和
照顧。
當時普遍的趨勢是賦予地方政府更多的責任。在 1984 年，地方政府有責任提供醫院之外的照護
服務(nursing services)(在養護中心或是病人自己家中)，而地方政府也透過國家經費補助的協助，發展
出其他類型的個人協助(personal assistance)。地方政府的責任在 1993 年被納入正式制度。在 1970 和
1980 年代間，挪威的教育體系產生改變，許多國立特殊教育學校被關閉，相關責任轉移至地方政府(小
學教育,primary education)和縣政府(中等教育,secondary education)，而且每位孩童皆有權利盡最大可能
在當地學校獲得適合自己特定需求的教育。
家屬、實務工作者和理論家開始尋求對於這些有認知發展問題的人，一輩子生活在一間能提供其
所有需求的教養院中，是否為最佳的因應方式。若使他/她參與不同的活動場所─學校、工作、運動、
電影院、咖啡館、家等─是否會比具備上述措施、但較少機會能接觸教養院住民跟職員以外的人的教
養院，來得更好？
挪威發展障礙者協會(The Norwegian Association for Persons with Developmental Disabilities, NFU)
對於此議題的公共辯論是非常活躍以及具有影響力的參與者。
此新方法被稱作「正常化(normalisation)」，這個詞被廣泛使用於挪威的政策討論中。近年這個詞
也明顯地被普遍誤解其要旨為對待智能障礙者如同「正常」人一般。當然，真正的目的是在於障礙者
應獲得盡最大可能的協助，以像其他人一般在各式活動場所中過著多樣的生活，擁有選擇自由，並且
如同大部分的我們一樣，從各式各樣的動機刺激中獲得益處。
1980 年代，教養院出現一些弊案，使得這個舊體系名聲敗壞，它們部分起因於常見的因素─資源
過少且能力不足─並且部分因為執行上是由受過行為治療訓練的人進行，但他們卻似乎缺乏常識和同
理心。
政治進行方式(The political process)
政府為了要進行改革而指派一個委員會，此委員會做出結論，表示教養院無法提供好的居住情
境，並且一致建議進行改革，如同我前面已經概述的內容。
對於委員會提議的支持並不一致，NFU 出現分裂，其少數成員尚未準備好要關閉所有教養院，於
是成立一個新組織。但是公共辯論是由 NFU 主導，重要的職員組織(staff organizations)熱切地支持此

211

委員會，針對此商討會的回應大多表示贊同。此一關於逐步廢除教養院並將責任由縣政府轉移至地方
政府的法案於 1988 年正式通過，1991 年 1 月 1 日進行責任移轉，且規定應於 1995 年 1 月 1 日將所有
教養院關閉，之所以決定短暫的過渡期間是為了降低轉變帶來的問題。
此改革的目的是讓所有心智障礙者能獲得更好的居住情境，包含居住於教養院或是其他的心智障
礙者。
我們如何進行組織(How we organised ourselves)
健康與社會部(The Ministry of Health and Social Affairs)的社會部(Social Affairs department)中一些
公務人員負責此改革，與其他行動者進行緊密合作，其中當然包含政治領導部門(the Ministry's political
leadership)。我們規劃安排：
 每隔兩周開一次會議，會議成員包含：
- 挪威發展性障礙協會(the Norwegian Association for the Developmentally Disabled)
- 挪威地方和區域當局的協會(the Norwegian Association of Local and Regional Authority)
- 公共衛生的理事會(the Directorate of Public Health)，其對教養院體系具有國家責任
 與挪威社會教育工作者(心智障礙者的照顧專家)協會(the Norwegian Association of Social
Educators)密切連繫
 國家政府部會之間的合作
 與縣政府首長密切聯繫，此首長為國家政府的區域代表，有諮詢和監督功能，並處理相關特定地
方決策之申訴。
重要議題(Important issues)
我們必須針對許多問題找出因應方式，以下我提出幾點評論。
教養院的住民應安置於何處？
原則上，政府的政策表示，教養院住民應要返回其進入教養院前所居住在地方政府區域中的「家
庭」(return home to municipalities)，但是個人應要為自己做決定。許多障礙者沒有任何家園或家庭可
以返回，而且也有許多障礙者想要和教養院的朋友住在同一個地方。所以如果在詢問當中的障礙者有
充足理由選擇特定地方政府，另一個地方政府便有義務要提供服務。如果它拒絕，障礙者可以向縣政
府首長提出申訴。
這樣的案例通常很難處理；如何判定一個人的真正期望和最佳利益，當這個人在被詢問時甚至可
能無法理解問題的含意？此時需要根據認識此障礙者的家屬、監護人和教養院工作人員之觀點─而這
些人通常並不同意這麼做。
計畫過程：針對個人、個別地方政府以及個別教養院的計畫(The planning process: plans for each

212

individual, for each municipality, for each institution)
個別計畫應針對每個人進行擬定，包含「教養院住民(institution dwellers)」和「家庭居住者(home
dwellers)」。地方政府計畫應以個別計畫作為基礎，由地方政府和縣政府一同合作執行逐步廢除教養院
的計畫，而個人自身或家屬、監護人應參與計畫過程，其代表組織亦應參與地方政府層級的計畫。
政府針對個人和其他計畫的建議和指導內容被公告，而地方政府獲得一筆特殊經費補助以負擔其
計畫成本。
招募有能力的規劃者通常很難，許多規劃者是先前教養院的職員，可能會被教養院的思維所影響。
地方政府在跨部門職責間並沒有擬訂個別計畫的慣例。
協助障礙者行使其法律能力(Aiding people in exercising their legal capacity)
當障礙者在法律前並沒有協助時，許多心智障礙者無法行使其權利，我們要求地方政府官員和其
他人在有需要的地方，開設預約會面以給予監護人支持。
編預算和籌募資金(Budgeting and financing)
挪威的縣政府和地方政府得到國家允許負擔其部分支出，我們起初並沒有合適的數據以呈現教養
院以外良好服務的提供所需成本，市政計畫提供有用的資訊。儘管如此，預估成本在一些時候應被增
加，總成本被分配到各個地方政府，分配比例取決於其所負擔的教養院住民人數。此外，新的補助(fresh
money)亦有所提升，以此讓地方政府針對家庭居住者(home dwellers)和先前教養院的住民，提供更好
的服務。
人員培訓(Training of personnel)
「社區照顧」的目標是有別於傳統的教養院，並不會為個案做所有的事務，而是協助和鼓勵其發
展自己的能力，以應對日常生活的活動。我們發展出一個為期五天的基本培訓方案，得到了廣泛應用。
教養院的工作人員絕大多數非專業人員，沒有受過正規的訓練，當中許多人能勝任此工作，是因
善良與有同理心的人生經歷，而另一些人則無法勝任。其鼓勵所有的二級或三級得到正規教育，增加
學校和學院結合在職進修與兼職工作可能性的能力。
在挪威，我們有一種職業是「社會教育者(social educators)」，他們是為心智障礙者提供醫護服務
的專業人員，不幸的是，一些院校教育他們似乎贊成機構式體制和有點極端的傳統行為療法工作。有
關智能障礙在中等教育的教學，某種程度上也受到傳統制度的影響，因此 NFU 不會太樂觀要求每個
人都應該有正規教育；他們認為所提供的教育並未真正給人們所需的能力。我們做了一些嘗試影響
社會教育學院的概況，但不如預期的成功，學院的學術自治保衛他們的學術自由。
我們能期待地方政府在服務、居住等有所作為？(What did we expect of municipalities as to
services, housing etc?)
服務應符合對社會服務、醫療服務、教育等一般立法的要求，居住是由國家住宅銀行資助，且銀
行對於心智障礙者應和其他人一樣的最低標準。

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健康服務(Health services)
當時專科醫療服務是縣政府的責任，其之間建立(重新)康復單位可以提供説明和建議市政服務。
初級和專業的醫療服務成員往往很少、甚至無與心智障礙者交流的經驗。普通科醫生往往並沒有意識
到心智障礙者無法為自己諮詢需要的醫療協助。
工作和就業(Work and employment)
教養院提供心智障礙者庇護工場，將其責任轉移給合作的地方政府勞工局，地方政府的政策是庇
護工場應對各種身障人士開放，且應避免僅專對某一群體提供訓練場所，因有些人認為這將導致降低
心智障礙者的職場競爭力需求，故歡迎更開放的做法，畢竟，很少有心智障礙者於一般企業就業。
機構人員的新工作(New jobs for institution personnel)
機構人員不得不改變，地方政府在 1991 年接管負責教養院，進而有義務向其提供持續的就業，
當機構逐步被淘汰，則必須擴大提供就業機會的替代性服務，但是，一些地方政府無法為所有教養院
內住民提供穩定就業，特別是小鎮中的大型教養院，許多住民(inmates)已轉移到其他地方。在偏僻的
地方創造新的就業機會並不容易，即使一些鄉鎮成功地吸引了新的企業。
昔日機構建築的再利用(Use of former institutions buildings)
我們說過很多小機構可能會轉換為公共住宅，但我不知道實際上會做到何種程度，而對於取代大
型機構的用途，往往在人口稀少的農村地區，是不容易的，據我所知，其中仍有一些是閒置空間。
壓迫(Coercion)
我們都知道，有時會以壓迫方式來面對心智障礙者，以避免受到嚴重傷害，或以確保他們的飲食、
服裝、衛生等基本需求得到滿足。壓迫意味著影響人的意志，然而，在一些大型機構中卻是合理的做
法，這樣的做法應該不被允許，相信更好的生活條件應減少壓迫的行為發生，這是過於樂觀的觀點，
立法允許使用壓迫在所有可能的其他措施中已被嘗試後採納。而嚴格的程序規則阻止使用壓迫，實際
上已減少。
給地方政府當局專家的建議(Expert advice for municipalities)
 許多地方政府當局對心智障礙和服務需求的知識準備不足，國家管理者和其他行動者組織了會議
提供基本知識與協助並形成網絡，NFU 發揮了重要作用。
 新縣康復單位理應向當地人員提供指導
 國家研究在心智障礙和社區已經確立。
傳達訊息(How was the message conveyed)?
成為成功的改革者必須內化社會的想法和獨立生活（雖然我不認同當時說詞）。就組織和服務內
容的基本需求給予一般性立法或根據一般性的立法。「general」-意思是立法不只適用於服務心智障礙，
而是適用於需要社會服務、醫療服務等等的所有人。中央政府通報、小冊子和演講設置標準為組織和
服務內容、居住等等。直轄市通常遵照中央政府的指導和建議，即使標準沒有法律約束力。縣政府在
組織會議發揮了積極作用，並與地方政府當局有廣泛口頭聯絡。去機構化在當時媒體相當具有議題和
公開辯論性，因此大眾可知辯論與過程。

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改革期間問題解決(Problem-solving during the reform process)
地方政府為改革提供許多挑戰，像必須提供心智障礙者的需求和包容性的環境。有些是完全能勝
任這些挑戰，有些則是迷惘、或缺乏政治承諾和管理及專業知識承諾。即便如此，他們必須：貫徹規
劃進程，與心智障礙者及他們的親屬合作，提供新的居所、提供個人助理和其他健康和社會服務，尋
找就業或其他有意義的一天活動，有助於實現包容性的休閒活動等。
縣政府、NFU、挪威地方和區域當局的協會和其他有興趣的組織代表，對於如何解決各種問題提
供意見。縣政府舉辦會議做經驗交流與討論實踐，是前地方政府當局的協會所成立一個利益組織和經
驗交流的論壇。該部門聘僱專業顧問/問題解決專家，他的知識淵博、實務經驗、承諾，談判技巧和激
勵信心的行為證明在許多困難的地方過程中很有幫助。
改革追蹤(Follow-up of the reform)
地方政府當局在第一年必須給我們統計資訊，使我們能夠進一步實現改革目標。他們批評這個報
告意味著相當大的行政負擔，因此我們必須終止 -在我看來，言之過早。由挪威研究理事會主辦發起
與資助一個研究方案。提供了有用的資訊，關於改革實施、心智障礙者的生活條件和各項有關服務的
提供等問題。該方案還大幅度推動挪威障礙研究。
實現什麼(What have we achieved)?
我們設定了雄心壯志的改革目標，然而目標只有一部分被達成，即便如此，印象中，我們依然領
先於大多數其他國家相當多，包括我們的北歐鄰國。
居所房舍(Housing)
每個住在舊的機構已經轉移到新住所-基準有所演變。但是，新的住所往往不能在一般社區的住
宅，而是集中居住或是不尋常的多層樓房類型，或者是較大所屬單位的障礙者公寓樓層。
協助日常生活活動的服務(Services to assist activities of daily life)
協助樣態是多元的，通常是以團體居住的居民為主，而不是個別的。在某些情況下，協助是不足
的，有時則是太多，導致服務的延續性不足。提供的服務似乎仍常受到傳統機構的影響，非「獨立生
活」的思維。市政當局有時無視一個人有權選擇他或她的居住地和與誰同住。
醫療和專業保健服務(Medical attention and specialised health services)
勞動市場的參與(Labour market participation)
很少有人能投入一般的工作場所。
很少能擁有一般的補助的工作。
教育(Education)
學校仍然有相當多的隔離。
個人誠信(Personal integrity)
仍然有過多使用威權和壓迫，雖然因改革而通過的新法已減少使用這類措施。
權利(Rights)
在使用者參與服務決策上很少落實

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休閒活動、假日(Leisure-time activities, holidays)
和舊機構相比降低標準
總體情況(Overall picture)
到目前為止我的印象是，即使這局面並非如我們所想要的，不過似乎舊機構的居民和其他人比之前好
轉許多。很少，主張回歸到舊的制度。

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Organization Transformation
組織轉型
作者： Jos van Loon & Peter van Wijk, Arduin 基金會, 二月 2015
翻譯：高靖翔國立台北大學研究生校譯：張淑娟心路基金會
前言
現今許多為智能障礙者提供支持服務的機構正面臨著一項根本的挑戰，那就是對其服務型式的質
疑，主要是因為發展趨勢呼籲越來越多國家從集體的安置轉型為以社區為本位的支持服務。舉例來
說，2013 年歐洲障礙者協會(EASPD)在歐洲討論去機構化和提倡以社區為本位的服務時，曾提到：「…
是時候了，是應該為障礙者以及所有與障礙者相關的利害關係人，提出具體的去機構化規劃和以社區
為本位的環境。」。
然而，還有更多的挑戰，像是資源逐漸減少、組織結構由垂直轉型為水平、從一般服務到轉移成
個別化的支持、需將價值校準於服務輸送的實作之中、聚焦在實證和以實證為基礎的實作，以及建構
與以組織為基礎的自我評估、策略規劃和績效評估相關的組織能力(Schalock & Verdugo, 2012)。這也
是聯合國身心障礙者權利公約對世界的影響(CRPD;2006 )，結論是如今許多支持障礙者的組織必須面
臨組織轉型。
Arduin 是荷蘭一個提供智能障礙者服務的機構，並且在此發展趨勢有著重要的領導位置。第一個
Arduin 成立於 1969 年，稱為”Vijvervreugd”是一所提供智能障礙者居住的機構。1994 年受到新管理主
義的影響，某些層面的照顧品質明顯不足，因而制定了行動方針。新的 Arduin 變成獨立的新組織，
這些行動計畫是以聚焦在生活品質以及支持典範為發展基礎，並期能帶來必要的改變。Arduin 從機構
式轉變成以社區為本位的組織，著重在優先支持個人為自己做決定(Van Loon & Van Hove, 2001)。
目前，Arduin 約服務 800 人：其中 533 人是全日型 24 小時(生活和工作/日常活動)，37 人是服務
送到家，有 25 天的短期住宿(週末和假日)，另外有 205 人是接受 Arduin 的工作/日常活動支持服務。
他們住在超過 150 間廣布分散在社區的一般住家，白天在各種不同的企業或日照中心全職工作，並根
據每個人的需求提供支持。形成這組織的一個重要口號是「盡量一般化，必要時特殊化」。
隨著以社區為本位的組織轉型，Arduin 尚未完成這轉型的過程，Arduin 並不是「準備好了」。近
來支持智能障礙者領域的發展，誠如前面所提及的要回應責信，要求要有新的反應。
在本章中，主要談及的是組織轉型的重要因素，首先是去機構化的過程，其次則為了新發展而持
續不斷調適的過程。在此以 Arduin 為例，但要強調這些在 Arduin 所發揮和扮演的因素，在組織轉型
中是很普遍的。
全文中我們將重要的組織轉型指導方針加上框線並編號。

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Arduin 去機構化過程：生活品質為主要原則
引領重組以及去機構化的過程中，其主要的本質和之後的態度是智能障礙者應該能夠決定自己的
生活樣態，賦予其意義。這跟以前荷蘭對智能障礙者在機構中所接受的照顧是完全不同：個人為最小
單位，包括將居家生活和照顧分開，尤其是智能障者的解放和自我決策是生活品質最重要的起始點
(Van Loon & Van Hove, 2001)。在米德爾堡鎮的 Vijvervreugd 機構已經關閉。
1.將居住、工作/日常活動和休閒三個生活領域分開，被認為是在去機構化過程和提升生活品質中重要
的根基。
明確的重點和創造力
2.在方案變革的過程中，將重點放在生活品質和以及支持典範。
從國際 QOL 文獻，透過八大生活品質核心領域將生活品質 (QOL)概念操作化並加以落實
(Schalock & Verdugo, 2002) 。從行動研究中我們歸納出八個核心領域，其中的自我決策
(self-determination)和個人發展(personal development)對從傳統機構的「全面照顧(total care)」到「支持」
的轉變有著很重要的影響，是 Arduin 對服務對象獲得最佳生活品質的基本保障(van Loon & Van Hove,
2001; van Loon, 2005)。
鼓勵個人由依賴發展到自我決策，並明確關注長期以個人為參照的成果，這些是在運用生活品質
(QOL)的轉變過程中最根本的，而且跟所有的決議是相一致。
3.無論是在組織層級或是個人層級，每項決定必須有助於服務對象的個人成果。
這意味著八大生活品質領域將做為組織轉型的原則，任何管理團隊所做的組織決策必須有助於服
務對象的生活品質：如應促進自我決策、應有助於社會融合，以及應增進個人發展等等。從「從右到
左的思考」(Schalock, 2001)強化了去機構化的決定、選擇朝向自治與自決的教練式管理風格、去官僚
科層制度，並發展以個人為中心的支持系統，以及為服務對象設置住宅局和空缺銀行等等。其中，去
機構化所面臨的問題是工作人員所接受的是機構式的訓練，不一定能自動轉換支持服務對象居住在社
區，因此，建議需要對這些專業人員實行新的教育訓練(van Loon, 2005)。
4.聚焦在生活品質和支持的重要政策，有時候是須要有大量的創新思維。
例如：Arduin 基於龐大的交通支出成本，曾成立自己的租車公司來降低購車所需的成本(租車公
司購車稅率較低)。面對挑戰沒有問題，只有挑戰。
5.關於生活品質無所謂的「是，不過……」。
品質管理：以實證為本位及聚焦在生活品質
Arduin 選擇把品質管理焦點放在生活品質而非照顧品質：組織所需要做的是提升個人的成果。從
照顧品質的觀點來看，工作人員和設施相較於服務使用者更具影響力。對著重在照顧品質的體制而
言，重要的成效往往是建構在可近性-可測量的，這也意味著以價值為本位的評估是不普遍的。照顧
品質體制並不保證已知的良好生活品質預測指標：如落實社會融合、自我決策和個人發展(van Loon &
Van Hove, 2001)。因此，經常可發現這樣的體制是強調障礙、分類、同質性團體、健康與安全，以及
控制(De Waele & Van Hove, 2005)。照顧品質的策略主要關注的是過程(Maes et al., 2000)，此過程允許

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組織投入大量的時間和精力在其(管理)架構和安排，有時候阻礙了果斷，甚至在某些情況下放棄了該
有的原則。
致力於提升生活品質的組織，其基本信念是：(a)智能障礙者的生活品質構成因素跟所有人都一
樣，也相同的重要；(b)賦予個人權利對影響自己的生活做決定，其生活品質將可提升；(c)個人被所處
的社區接納，可增進其生活品質；(d)個別化的支持可提升個人的生活品質 (Brown & Brown, 2003;
Schalock et al., 2000; Schalock & Verdugo, 2002; Schalock et al., 2008)。
適應新的發展
首先，聯合國身心障礙者權利公約(CRPD;2006 )提出了一份對政府機關、專業服務人員、管理者
和臨床工作者極富挑戰的議程。這份公約提出具體的方針引導我們如何評估當前的體制和結構是否適
當，並界定如何遵照公約來落實；更重要的是，如何透過我們的實踐和支持來保障和促進智能障礙者
的權利(Stainton and Clare, 2012)。如 Stainton 和 Clare 所提，公約的內容充分體現對智能障礙者社區
議題的關注；很多重要的例子，包括第 12 條法律之前認同其平等、第 19 條的獨立生活和融入社區，
強調一些相關的權利：完全的融合和參與、選擇居住地點和獲得必要的個人支持，以避免與被隔絕或
隔離；而第 17 條關注的是在生理和心理上有權獲得完整的尊重。
聯合國身心障礙者權利公約(CRPD)附帶一項要求，需以實證為基礎的工具來協助促進這些權
利。Verdugo, Navas, Gomez and Schalock (2012)發現生活品質量領域和公約條款之間有著密切的關係，
可用生活品質的八大領域來評估這些條款。這意味著良好組織品質的指標若要想符合身心障礙者權利
公約(CRPD)，應優先以(實證為本位)成果指標為基礎，並連結服務對象的生活品質。無論是輸入、過
程、個人成果，以及方案或組織的產出皆應與生活品質有關。
在個人以及組織層級皆可採用個人成果量表的數據(POS; van Loon, Van Hove, Schalock, & Claes,
2008)，收集成為重要的實證本位的成果(Van Loon, Bonham, Peterson, Schalock, Claes & Decramer,
2012)，亦可回應面臨的挑戰：需要聚焦在實證以及以實證為本位的實作。
支持系統
6. 就組織而言，若要提升生活品質重要的是要有消費者的參與(Schalock et al., 2007)：組織的基本策略
是讓消費者有角色、有意義的參與。
在聯合國公約中的重要口號「沒有我們的意見，就不要幫我們做決定(Nothing about us,
without us)」。對服務提供者的一個關鍵問題是：服務對象參與他們的個別化支持計畫(ISPs)的擬定
和執行是到什麼樣的程度。
6.個別化支持系統
Arduin 發展一個支持系統是以個人為中心(亦即是以個人的興趣、喜好、需求和支持網絡為基
礎)、具回應性(是以個人及相關人員參與支持計畫的對話為根基)、具彈性的回應不同的生命
階段、積極主動(即人人機會平等、充權、有效的促進社會融合/社區參與)，以及以數據為本位
(以個人的支持需求強度與型態為基礎，並評估個人成果的促進) (van Loon et al., 2010)。

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7.個別化支持計畫的成果應提升其生活品質，欲確定該成果是否發生，需要對生活品質相關領
域做信度與效度的評估。
Schalock and Verdugo(2002) 以生活品質概念模式和測量架構發展出個人成果量表(POS)(van
Loon, Van Hove, Schalock, & Claes, 2008)，個人成果量表(POS)分為自我報告(Self Report)與直接觀察
(Observation)兩大部分，這兩個部分皆須由受過培訓並有認證的訪員進行訪談。自我報告最好是訪談
服務對象，直接觀察則是訪談其他人(如果無法獲得自我報告)，可能是父母、直接支持人員或專業人
員。個人成果量表(POS)每一個領域有 6 個題項，是依照生活品質領域來發展。為了做比較，自我報
告與直接觀察的每個題項內容都相同的。個人成果量表(POS)的自我報告和直接觀察所獲得的分數可
分類為 3 個要素和 8 個領域。
在以個人為中心的支持系統，需對個人的願望與目標、從支持需求評量所獲得的他或她所需的支
持(Thompson, Bryant, Campbell, Craig, Hughes, Rotholz et al., 2004)、個別化支持計畫(ISP)，以及運用個
人成果量表(POS)來評估生活品質這之間進行校準。在進行想望和目標、評估的支持需求、個別化支
持計畫(ISP)的組成要件，以及生活品質成果校準時，創造了一個提改善生活品質的最佳臨床決策機
會。在 Arduin，這支持系統是透過網路電子通訊來運作(van Loon, Van Hove, & Schalock, 2009)。在發
展個別化支持計畫的兩個最重要也是相當簡單的問題是：(1)個人想要的是什麼?(2)需要哪樣的支持?
第三個問題則是：(3)支持的目的?支持的成果為何? 答案很簡單: 結果顯而易見的是良好的生活品質。
8.支持方法論的核心要素是與個人對話。
發展 ISP 與支持的過程是連續不斷的對話，事實上，ISP 的發展過程是持續在變化的，因此支持
是可以隨時調整，是對話的結果。在 ISP 中會有一位專業的個人助理負責跟服務對象進行 ISP 的對話，
每位服務對象都會有一位個人助理，他/她可以向組織提出支持，並擬定願望和直接向組織提出支持需
求。他/她負責維持與組織中不同的工作人員、服務對象及其家屬/或法定代理人之間的溝通協調，他/
她需確認所承諾的服務與照顧是依照服務對象的個人想望，並持續落實的進行。圖 2 是 ISP 的流程圖。
發展ISP的第一步驟是進行結構式訪談，著重在與服務對象以及他/她的父母或親戚討論個
人的生活經歷和想望目標。在要素一中，主要是訪其對QOL的各個領域有什麼想望、他的生
活目標以及理想中的生活狀況。這些資訊會記載在網路系統中。SIS（要素二）訪談（電子化），
同樣是與服務對象及其父母或親屬進行訪談。從要素一（對服務對象期望的生活經驗和目標）
以及要素二（SIS）所獲得的資料，透過電腦程式自動結合完成一份目標表單，這份表單是以
QOL為架構，摘要列出個人的目標以及要達成這些目標所需要的支持。以上述為基礎，個人
助理與服務對象以及支持工作人員進行對話(要素3)擬定出一份ISP，然後由支持人員和自然支持網絡
來實行(要素4)。支持成果(要素5)是透過相同的要素來監督，由訪員運用個人成果量表POS 訪談個人
(或重要他人)來評估個人成果 (Van Loon, 2008) (要素 6)。ISP的評估結果可以用來調整修正目標、觀
點和支持需求，以及形成之後的ISP。整個支持系的所有要素都已網路e化。SIS、個別化支持計畫以
及生活品質之間的校準，創造一個極好的機會有條不紊的支持與改善服務對象的生活品質：衡量生活
品質在支持方法論有其一席之地，其目的是持續不斷的提升服務對象的生活品質。

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圖 2 以個人為中心的支持系統
在組織層級以實證為本位的成果運用
9.將個人成果量表訪談的數據蒐集統計，提供給個人、組織的方案或是整體組織以實證為基礎
的成果資訊(Van Loon et al., 2012)。
要素 1
想望、個人期許與目標：
與服務對象進行結構式的訪談
要素 2
2.a.界定支持需求：對他重要/為他
重要，如：支持強度量表
2.b.如有需要：其他額外的診斷/評估
要素 3：發展個別化支持計畫
a. 服務對象(與其個人助理)將願望與目標和支持需求整合在一起，
對個別化支持計畫產出新的想法：我想要如何被支持?
b. 與助人工作者/專業人員(心理師)討論上述想法
c. 一起決定 ISP，確認要充分參與社區需要提供什麼樣的支持。
要素 4
執行
參與的支持者：自然支持網絡和專業的支持者
要素 5：監督
與服務對象對話
目標和願望的
落實狀況?
服務對象有得到他/
她所需要的支持?
要素 6：個別化支持計畫評估
運用 POS 個人成果量表來評估生活品質

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舉例來說，服務對象、方案或整個組織的 POS 結果是存在 Arduin 的資訊管理系統中，是
以原始分數或是百分比呈現，方便隨時進行對照，且每筆資料都設有安全密碼，僅授權給組
織內部的工作人員。
以個別的 POS 數據圖表為例，一位參與支持服務對象的心理師可以先看到生活品質的資
料(原始分數)，進而是該資料和組織中其他服務對象的比較(百分比)。再舉第二個例子，管理
者可以看到一個服務據點所有服務對象 QOL 的平均值（原始分數），以及該單位的平均分數
與組織其他服務對象之間的關係（百分比）。因此，進行這些數據的分析與討論是重要的，能
夠改善生活品質，像是討論工作人員可能需要的額外專業能力。第三，可以看到組織所有服
務對象 QOL 分數的平均值(原始分數)，這些數據的分析與討論，可做為改善策略用來：聚焦
組織政策與改革、為服務對象及工作人員進行額外所需的培訓以賦予能力，並確認達成個人
成果的顯著預測指標。最後，在品質管理模式使用 POS 側面圖是重要的關鍵，當組織責信是
問題時，那麼有什麼比服務對象的個人成果，以及生活品質更重要呢？
以實證為本位的自我評估來做組織評估與組織變革
10.在變革的過程中，人群服務組織可以運用以實證為本位的自我評估來做組織評估，以促進
持續的品質改善和組織變革。
儘管 Arduin 實行支持模式、生活品質理念，以及成果評估，但仍覺得需要建立以最佳實
作為基礎的實證本位指標，及以更廣泛的觀點來看待績效評估與管理。為此目的，我們採用
了組織效益與效率量表(OEES)，此量表是由實證本位實務國際研究聯盟發展的(2013)，主要是為
了協助非營利組織能符合對組織效益與效率與日漸增的需求，使其能更有效益的達成預期的
結果、更有效率的做資源分配，以及能更持續地調整改變，且提供合理妥適的服務輸送機會
與實作。OEES 採用平衡計分卡來評估績效與管理的四個績效構面：顧客構面、成長構面、財
務構面與內部運作構面。從 OEES 在每一個績效構面所獲得的評估分數摘述成側面圖，以及三
項實證本位指數。這三項實證本位指數為：(1)效益指數是以評量服務使用者與組織成長為基
礎、(2)效率指數則是以評估組織的財務分析與內部運作為依歸，(3)永續指數是效益與效率指
數的總合，這四個構面及三項指數也反映採用平衡計分卡來評估管理與組織表現(Schalock &
Verdugo, 2012; Tsai et al., 2009; Wu et al., 2011).
Arduin管理團隊運用OEES進行組織評估，由一位受過訓練的外部督導擔任訪員，訪談管理團隊，
評量的目的是為了瞭解更好的共同合作評估程序，並使用這些資訊來提升品質。根據OEES的評估結
果發展出一份品質改善計畫，其中包含：管理團隊依據所收集到的、經過分析、評估與討論後發展執
行策略。進行有關現行輔助科技設施與策略的研究，了解運用的可能性及評估對提升個人成果的效益。
結論
從Arduin的案例中，反映出許多人群服務機構正在面臨的改變與轉型，在這重大變化中Schalock,
Lee, Verdugo, Swart, Claes van Loon & Lee (2014)，提倡以個人為中心、從一般性的服務移轉成提供個

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別化的支持、將以個人為中心的價值定位(生活品質、自我決策、融合、充權和平等)校準於服務輸送
中，以評估個人目標與個人參照的支持需求、提供個別化的支持系統、評估個人成果、簡化組織，從
垂直轉為水平結構，並落實高績效團隊、以績效觀點來建構組織數據系統，其提供平衡評分卡來做自
我評估、報告、標竿和品質改善。品質改善是一個持續不斷的過程，將自我評估與特定的品質改善策
略整合在一起。
組織改革正面臨挑戰，需要為支持障礙者的服務領域提供一個概念架構作為轉型的指引，生活品
質架構確實有助於引導組織的轉型過程，並且無論是在個人或是組織層級皆可運用生活品質來衡量個
人成果。

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Organization Transformation
Jos van Loon & Peter van Wijk, Arduin Foundation, January 2015
Introduction
Today many organizations providing supports to people with intellectual disabilities (ID) face quite
fundamental challenges that question their existence in their current form. An important development is
that there is in more and more countries an urge to come to a transition from congregated settings to
community based support. For example, in 2013 the European Association for People with Disabilities
(EASPD) discussed deinstitutionalization and the promotion of community based-services in Europe:
“….It is time to put forward concrete planning for deinstitutionalization and community-based settings
involving persons with disability and all mainstream and disability stakeholders.”
But there are more challenges, such as decreasing resources, a movement from vertical to
horizontal organization structure, a shift from general services to individualized supports, the need to
align values with service delivery practices, the focus on evidence and evidence-based practices, and the
need for capacity building in reference to organization-based self-assessment, strategic planning, and
performance evaluation (Schalock & Verdugo, 2012). Important in this respect is also the mondial
influence of the UN Convention on the Rights of People with Disabilities (CRPD;2006 ). The
conclusion is that many organizations supporting people with disabilities nowadays face the need for
organizational transformation.
Arduin is a Dutch organization providing services for people with ID in which these developments
had and have a prominent place. First established in 1969, Arduin was organized, under the name
‘Vijvervreugd’, as a residential facility serving persons with intellectual disabilities. In 1994, when the
organization came under new management, there was clearly insufficient quality of care in several
respects and a course of action was drawn up. The new Arduin became an independent, refocused
organization. The action plan that was developed to bring about the necessary changes was based on a
quality of life focus and the supports paradigm. Arduin was transformed from an institution to a new
community-based organization, focusing on supporting each individual who in the first place himself or
herself determines what he or she needs (Van Loon & Van Hove, 2001).
At present, Arduin serves about 800 persons: 533 for 24-hours a day (living and work/daily
activities), 37 who get support in their homes, 25 short-stay (weekends and holidays), and 205 who
come to Arduin for (support in) work/daily activities. People live in over 150 normal houses in the
community, spread over a wide region, work full-time in a great variety of businesses or daycentres, and
are supported by support workers according to their needs. An important motto in forming this
organization was “Common what can, special what has to”.
With the transformation to a community-based organization, the process is not done yet. Arduin is
not ‘ready’. Recent developments in the field of support to people with ID, as mentioned above, and
with this the urge for accountability, ask for new responses.
In this chapter we want to focus on important factors and themes in organizational transformation,
first in the process of deinstitutionalization and, second, in the continuous process of adjusting to new
developments. In doing so we describe the organization Arduin as case, but we want to emphasize that
the factors that played and play a role in Arduin, can largely be seen as universal factors in
organizational transformation.

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Deinstitutionalisation Process of Arduin: Quality of Life as leading principle
The essential and consequent attitude in the process of reorganization, leading to the
deinstitutionalization, was that a person with ID should be enabled to decide himself how to give
meaning and completion to his live. This made necessary a completely different way of organizing as
common in the care for people with ID in the Netherlands until then: namely the individual person as
the smallest organizational unit, including the splitting up of home living and care. Especially the
emancipation and self-determination of people with ID was the most important starting point for quality
of life (Van Loon & Van Hove, 2001). Vijvervreugd, the institution in the town of Middelburg, was
closed.
A clear focus, and creativity in pursuing this
The concept of quality of life (QOL) was operationally defined and implemented through the eight
core domains on quality of life found in the international QOL literature (Schalock & Verdugo, 2002).
From a large action research project we concluded that from these eight domains inclusion,
self-determination and personal development were especially influential in the shift from ‘total care’ - as
organized within the traditional institutional care - to ‘support’, and they were considered to be
fundamental to secure the best possible quality of life for the clients of Arduin (van Loon & Van Hove,
2001; van Loon, 2005).
The individual is encouraged to develop from a position of dependence to one of
self-determination. There is a clear focus on long-term person-referenced outcomes. It was essential in
the process of change that the implications of the focus on QOL was carried through consistently in all
of the resolutions made.
This means that the eight QOL domains were used as guidelines in the transformation of the
organisation: whatever organisational policy decision the management team took had to contribute to
the QOL of the clients: e.g. should make self-determination possible, should contribute to inclusion,
should enhance personal development etc. This ‘from right to left thinking’ (Schalock, 2001) was
accentuated in the decision to dismantle the institution, in choosing a coaching style of management
directed towards autonomy and self-direction, in abolishing a lot of bureaucracy, as well as in the
development of a person-centred support system, a housing bureau and a vacancy bank for clients, etc..
One of the problems we encountered in the deinstitutionalization, was that the staff who were trained to
What we consider to be guidelines in organizational transformation is placed within a
framework throughout the text. These guidelines are numbered.
1. The separation between the three life spheres—accommodation, work/daily activities, and
leisure—was seen as fundamentally important in the process of deinstitutionalization and promotion
of quality of life.
2. A focus on quality of life and on the support-paradigm was continuous during the program
changes.
3. Every decision, at the organizational level as well as at the level of the individual client, had
to contribute to the personal outcomes of the clients.

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work in an institution are therefore not automatically trained to work in supporting people in community
based working and living situations: therefore a new education for this profession was suggested and
implemented (van Loon, 2005).
For example: because of the expanding costs of transport, Arduin once started its own taxi-company,
to reduce the costs of buying cars (a taxi company has lower taxes when buying a car).There are no
problems, only challenges.
Quality Management: evidence based and focusing on QOL
In Arduin the choice was made to focus in the quality management on quality of life instead of
quality of care: what is necessary in the organisation to enhance personal outcomes. In a quality of care
perspectives of staff and facility are usually more influential than perspectives of the clients. The kinds
of results that are important in a quality of care system are often conceived in an
easy-to-reach-and-measure-way. This means that value-based evaluation is less popular. The quality of
care system gives no guarantee that existing knowledge about good predictors for quality of life, such as
social inclusion, self-determination and personal development, are implemented (van Loon & Van Hove,
2001). Thus, one frequently finds an emphasis on impairment, categorization, homogenous grouping,
health and safety, and control (De Waele & Van Hove, 2005). The main concern for quality of care
strategies is typically the process (Maes et al., 2000). This focus on the process allows organisations to
invest a lot of time and energy in their own (management) structures and arrangements, sometimes
inhibits decisiveness and in some cases even covers the abandonment of principles.
Basic to an organization committed to enhancing quality of life are the fundamental beliefs that: (a)
the QOL of people with disabilities is composed of those same factors that are important to all persons;
(b) a person’s QOL is enhanced by empowering persons to participate in decisions that affect their lives;
(c) QOL is enhanced by the acceptance and full integration of persons into their local communities ; and
(d) a person’s QOL is enhanced through the provision of individualized supports (Brown & Brown,
2003; Schalock et al., 2000; Schalock & Verdugo, 2002; Schalock et al., 2008).
Adjusting to new developments
To start with, the UN Convention on the Rights of Persons with Disabilities (CRPD; 2006) presents
a profound and challenging agenda for government institutions, service commissioners and providers,
and practitioners. It provides specific direction on how we assess the adequacy of our current systems
and structures and identify what must be done to bring them into compliance with the Convention, and
more importantly, how our practice and supports measure up to these fundamental obligations to
recognise, protect and promote the rights of people with ID (Stainton and Clare, 2012). As Stainton and
Clare mention, issues of concern to the ID communities are well represented in the Convention. There
are a number of important examples, including Article 12, Equal recognition before the law; Article 19,
Living independently and being included in the community, emphasises a number of related rights: to
full inclusion and participation, to a choice of place of residence and to the support necessary to live in
the community and to prevent isolation and segregation, while Article 17 focuses on the right to respect
for physical and mental integrity.
With the UN Convention on the Rights of People with Disabilities (CRPD) also comes a need for
4. In this consequential policy of focusing on QOL and supports, sometimes a lot of creative
thinking was necessary.
5. Regarding the focus on Quality Of Life there is no “yes BUT,…”.

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evidence-based instruments that help in the promotion of these rights. Verdugo, Navas, Gomez and
Schalock (2012) found a close relationship between the QOL domains and the Convention Articles;
these Articles can be evaluated assessing indicators associated with the eight QOL domains. This means
that indicators for good quality of an organisation, that wants to conform to the articles of the CRPD,
should in the first place be (evidence based) outcome based indicators, linked to the quality of life of the
clients. Inputs and processes as well as personal outcomes and program or organization outputs should
be related to QOL.
In this respect the data on the use of the Personal Outcomes Scale (POS; van Loon, Van Hove,
Schalock, & Claes, 2008), in an organization can generate important evidence based outcomes on an
individual as well as an organizational level (Van Loon, Bonham, Peterson, Schalock, Claes &
Decramer, 2012), which also is an answer to another challenge: the need to focus on evidence and
evidence-based practices.
System of Supports
Important motto in the UN Convention indeed is “Nothing about us, without us”. As, for a service
provider, the essential question here is, to what degree consumers are involved in the development
and implementation of their ISPs, Arduin developed a Individualized Supports System.
that is person centered (i.e., based on the person’s interests, preferences, needs, and natural
support network); responsive (i.e., based on a dialog between the person and those involved in the
supports plan); flexible across the life span; proactive (i.e., equalizing opportunities with fellow citizens,
empowers the person, generating effective social inclusion, and increasing social/community
participation); and data based (i.e., based on the pattern and intensity of support needs and evaluated
in terms of facilitating personal outcomes (van Loon et al., 2010).
The POS (van Loon, Van Hove, Schalock, & Claes, 2008), which is based on the QOL conceptual
model and measurement framework by Schalock and Verdugo (2002), was developed for that purpose.
The POS has a Self Report and an Observation by Others version. Both versions are administrated in an
interview format by a well-trained, certificated interviewer. The interviewer completes the Self Report
preferably with the client, or the Observation by Others ratings (if Self Report is not possible) with a
parent, direct support worker, or professional. The POS has 6 items for each QOL domain. For
comparability purposes, the content of each item is the same for the Self Report and Observation by
Others versions. The POS results in scores for the three factors and eight domains from both the Self
Report and the Direct Observation versions.
In the person‐centered support system there is an alignment between the wishes and goals of a
person, his or her support needs as measured by the Supports Intensity Scale (Thompson, Bryant,
Campbell, Craig, Hughes, Rotholz et al., 2004), the Individual Supports Plan (ISP), and his or her quality
of life as measured with the POS. This alignment among wishes and goals, assessed support needs, ISP
components, and quality of life outcomes, creates an excellent opportunity to enhance clinical
6. Important for the embedding of improving Quality of Life in an organisation is consumer
involvement (Schalock et al., 2007): an essential organizational strategy involves incorporating
consumers in meaningful roles.
7. The outcomes of an individual supports plan for a person should be an enhanced quality of
life. Determining whether this outcome occurs, requires the reliable and valid assessment of quality
of life‐related domains.

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decisions regarding how to support people methodically in improving their quality of life. In Arduin this
support system is communicated electronically in web‐based applications (van Loon, Van Hove, &
Schalock, 2009). In developing Individual Support Plans the two most important, and at the same time
quite simple, questions are: 1) What does the person want?, and 2) Which support does the person
need? The third question then is: 3) What is the purpose of support? What should be the outcome of
the supports given to the person? And also here the answer is simple: the outcome should obviously
be a good quality of life.
This dialogue is ongoing during the process of developing the ISP ánd during the supports as such.
In fact, as the supports can be adjusted anytime, as a consequence of this dialogue, the process of
developing an ISP is an ongoing process. The personal assistant is the professional who is responsible
for dialogue with the person on the ISP. Each client has a personal assistant that he/she can call upon
for support in the dialogue with the organization, in formulating wishes and support requests directed
at the organization. He or she maintains the communication between the various staff members of the
organization, the client, his family and/or legal representative of the client. He/she sees to it that the
agreed service and care is carried out in conformity with the wishes of the individual client. In Figure 2
the scheme for this ISP is depicted.
Figure 2 Design of a person centered support system
In the development of an ISP first the structured interview is held, emphatically with the person,
8. Central element in a support methodology is the dialogue with the person.

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his / her parents or relatives on the person’s desired life experiences and goals. This is component 1. In
this interview the person is asked on each domain of QOL what his wishes, his goals in life and ideal
situation would be. This is written in a web based program. Then the SIS (component 2) is
(electronically) administrated, again emphatically with the person, his / her parents or relatives. The
data from component 1 (the interview on the person’s desired life experiences and goals) and 2 (the SIS)
are then automatically by the computer program combined into an application, which gives an
overview of the goals of a person and the supports he needs to achieve these goals, within a
QOL‐framework. On this base the ISP is written by the personal assistant, in dialogue with the client
and the support workers (component 3), and then implemented by support staff and the natural
network of the person (component 4). The outcomes of the supports are monitored on the same
elements (component 5) and evaluated by measuring personal outcomes by interviewing the person
(or an important other) with the Personal Outcomes Scale (Van Loon, 2008) (component 6). The results
of this evaluation can / will result in an adjustment of goals, perspectives and needs of supports, and
subsequently in the ISP. All elements of this supports system are made electronically in web based
applications. This alignment between SIS, Individual Supports Plan and Quality of Life, creates an
excellent opportunity to support people methodically in improving their quality of life: measuring
quality of life gets a place in a support methodology, with the aim to continuously improve the quality
of life of people.

Using Evidence Based Outcomes on an organizational level
For example, the results of the POS within the Management Information System of Arduin can be
depicted in raw score or percentile for each client, each program, or for the entire organization.
Comparisons can easily be done between any point in time. This information is secured behind
passwords, available only to authorized people within the organization.
From the individual POS profiles for example a psychologist involved in the support of a person
can see first the QOL profile (in raw scores), and how this profile compares with the other clients of the
organization (in percentile scores). As a second example, a manager can see the mean QOL scores for
all the clients of a location (in raw scores), and what the average QOL score is of all the clients of that
location in relation to the other clients of the same organization (in percentile scores). These data are
important to analyse and discuss and thus can be used for quality improvement such as discussing
which additional competencies are needed for the staff of this location. Third, one can see the average
QOL score of all the clients of an organization (in raw scores). These data are also important to analyse
and discuss for developing quality improvement strategies that focus on organizational policy and
change, additional competences needed by the staff in general, which courses need to be developed
for clients and staff, and the determination of the significant predictors of personal outcomes. Finally,
these POS profiles are important to use as key results in a quality management model. When
accountability is the question, what is more important than the personal outcomes, the Quality of life,
of the clients who are supported by an organisation?

An evidence‐based self‐assessment approach to organization evaluation and organization change
9. The data collected in the interviews with the Personal Outcomes Scale are aggregated to give
Evidence Based Outcomes information regarding the individual, organization program, or the
organization as a whole (Van Loon et al., 2012).

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Despite the implementation in Arduin of the supports paradigm and the QOL concept, and the
commitment to outcomes evaluation, there was a perceived need to look at both evidence-based
indicators based on best practices and a wider perspective on performance-evaluation and management.
For that purpose the Organization Effectiveness and Efficiency Scale (OEES; the Scale) was used. This
Scale was developed by the International Research Consortium on Evidence-Based Practices (2013) to
assist not-for profit organizations meet the increasing need to be more effective in terms of achieving
their intended results, more efficient in terms of their resource utilization, and more sustainable in terms
of adapting to change and providing a range of sound service delivery opportunities and practices. These
OEES measures four performance-based perspectives, which reflect a balanced approach to
performance evaluation and management: the customer perspective, the growth perspective, the
financial perspective and the internal processes perspective. Assessment scores obtained from the
OEES result in profiles summarizing scores for each of these four performance-based perspectives, and
three evidence-based indices: (a) an effectiveness index based on measures related to the customer and
organization’s growth; (b) an efficiency index based on measures related to the organization’s financial
analyses and internal processes; and (c) a sustainability index, which is the sum of the effectiveness and
efficiency indices. These four perspectives and three indices also reflect a balanced scorecard approach
to evaluating and managing organization performance (Schalock & Verdugo, 2012; Tsai et al., 2009;
Wu et al., 2011).
The Arduin management team assessed the organization using the OEES. A trained external
interviewer administered the Scale and the Management Team served as the Respondents. The intent
of the assessment was to understand better the process of collaborative evaluation and to use the
resulting information for quality improvement of the organization. Based on the results of this OEES
assessment a Quality Improvement Plan was developed which included e.g. a strategy to be developed
within the management team in which data that were collected were more structurally combined,
analyzed, evaluated and
discussed, and a study to be done into the possibilities of current assistive technology devices and
strategies. Their effectiveness in enhancing personal outcomes will be evaluated.
Conclusion
In the case of Arduin is reflected what is happening in many human service organizations
undergoing change and transformation. Important changes in this respect, mentioned by Schalock, Lee,
Verdugo, Swart, Claes van Loon & Lee (2014), were to put the person central, the shift from general
services to individualized supports, the alignment of personcentered values (quality of life,
self-determination, inclusion, empowerment, and equity ) with service delivery practices the assessment
of personal goals and person-referenced support needs, the provision of an individualized system of
supports, and the evaluation of personal outcomes); organizations are becoming more streamlined
moving from vertical to horizontal structure and implementing high performance teams; data systems
are organized around performancebased perspectives that provide a balanced scorecard that can be used
for self-assessment, reporting, benchmarking, and quality improvement; and quality improvement is a
continuous process that integrates self-assessment with specific quality improvement strategies.
The transformation of organizations, facing the challenges of contemporary developments in the
10. In the process of change, human service organizations can use an evidence-based self-assessment
approach to organization evaluation to facilitate continuous quality improvement and organization
change, to facilitate continuous quality improvement and organization change.

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field of support to people with disabilities, requires a conceptual framework which gives guidance for
this transformation. The Quality of Life framework proved to give excellent guidelines to organizations
for this process as well for measuring outcomes to be used on an individual ánd an organizational level.
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The use of evidence-based outcomes in systems and organizations providing
services and supports to persons with intellectual disability
以實證為基礎之成果的運用─
以提供智能障礙者服務及支持的系統與組織為例
作者：Jos H.M. van Loon, Gordon S. Bonham , Dale D. Peterson , Robert L. Schalock , Claudia Claes,
Adelien E.M. Decramer
翻譯：張家寧、高靖翔國立台北大學研究生校譯：李施德社區居住聯盟主任
摘要
本文描述以實證為基礎之成果(EBOs)如何被用來促進臨床、管理和政策決定。EBOs 作為以實證
為基礎實務的構成要素之一，是根據跨文化認可的生活品質概念和測量模型，以此取得生活相關品質
指標的一種測量方式。EBOs 由於可被用於多元用途，因此有其效用，且在評估策略上具有完善的信
度和效度。此一具備五個構成要素的 EBO 模型，提供架構於選擇、發展和執行以實證為基礎之成果
的相關活動。文中呈現三個國際案例，上述案例是以可信賴的、有效的、標準化的個人生活品質評估
之成果作為基礎，呈現 EBOs 何以被用來促進臨床、管理和政策決定。本文最後針對 EBOs 的使用和
發展之指導方針，以及 EBOs 運用上帶來的挑戰進行討論。
1. 簡介和回顧
本文描述以實證為基礎之成果(evidence-based outcomes, EBOs)如何被用來促進臨床、管理和政策
決定。以實證為基礎之成果被定義為生活品質相關領域的評估指標：(1)立基於跨文化認可
(cross-culturally validated)的生活品質概念和測量模型；(2)有其效用在於其可被用在多元用途；以及(3)
在所使用的評估策略之信效度上，具有穩健性(robustness)。EBOs 是以實證為基礎之實務
(evidence-based practices, EBPs)的關鍵要素，EBPs 被定義為用現今之最佳證據(best evidence)作為基礎
的實務，是從使用具信效度的方法、且有明確關聯與實證支持之理論或原理的可靠來源中，獲得的最
佳證據。
EBPs 和 EBOs 雖然與方案設計(program planning)、管理、評估模型有關，但仍不應將兩者劃上
等號。其中方案設計、管理和評估模型是例如那些典型被稱為方案邏輯(program logic)或全面品質管理
模型(total quality management model)。方案或生產模型強調組織或系統的投入(input)、運作(throughput)
和產出/結果(output/outcome)要素。方案邏輯可以確保方案一致性(program alignment)和評估組織或系
統的結果和影響。全面品質管理，例如歐洲卓越模式(European Excellence Model)以及與其相關的共同
評鑑架構(Common Assessment Model, CAF)，可被用來取得公共部門組織的特徵，作為公共行政改善
組織績效(organization performance)的工具，在各種用於品質管理的模型中扮演橋樑的角色，並且促進
公部門組織之間的標竿學習(benchmarking)(http://www.eipa.eu)。以實證為基礎之實務和以實證為基礎

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之成果，分別對應於方案邏輯模型的運作和產出/成果要素，以及全面品質管理模型(例如 CAF)的過程
和公民/顧客(citizen/customer)結果要素。
現有的文獻聚焦於以實證為基礎之成果應用在個人生活相關品質成果的評估及使用，而個人生活
相關品質在方案設計與評估、政策發展和系統改變中的使用逐漸增加。生活品質(Quality of Life, QOL)
是一個多面向的概念，被用在個體、組織和系統之間。此概念對於重新定義組織及其提供智能障礙者
與有密切相關之發展障礙者的服務和支持上，逐漸產生影響。因此，理解 EBOs 並將其併入最佳實務
中是必要的。
本文共分為四個部分。第一部分，描述由作者和不同國家的學者所發展出的以實證為基礎之成
果，其概念化的重要階段以及測量方式。此國際計畫的焦點在於定義以實證為基礎之實務、建立其評
估和使用所需的成果測量及標準，並且開始針對智能障礙者相關服務和支持所帶來的影響進行評估。
第二，我們提供例子以說明三個國際管轄區域(international jurisdiction)(加拿大、荷蘭和美國)如何運用
EBOs 於政策、管理和臨床決定。本文最後針對 EBOs 的發展和使用之相關指導方針、以及使用 EBOs
面臨的挑戰進行討論。
2. 以實證為基礎之成果的模型 (Evidence-based outcomes model)
以實證為基礎之成果模型包含確認成果資訊的預期用途、選擇欲使用的預期成果、建立特定成果
類型和客觀指標相關的概念模型、使用測量架構以評估特定成果、以及針對以實證為基礎之成果為依
據的預期用途之效用(utility)進行評斷。此模型是立基於 Schalock 等人(2011)提出以實證為基礎之實務
模型，呈現於圖一。
圖一：以實證為基礎之成果的模型
開始

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2.1 預期用途 (Intended use)
EBOs 可以被用在微視系統(microsystem)(個體)、居間系統(mesosystem)(組織)以及鉅視系統
(macrosystem)(國家、地區和省)。在微視/個體系統層次，EBOs 可用於個別化教育和復健服務與支持
的提供之相關臨床決定。而居間/組織層次上，其有多種用途，包含方案發展、紀錄、監督、評估和持
續的品質改善。至於鉅視/國家─地區層次，EBOs 亦可被用於紀錄、監督、評估和持續的品質改善。
2.2 預期成果 (Intended outcomes)
在特定成果的選擇上，會依據組織或系統目的與目標，以及各別組織或系統服務和支持之個體的
個人目標。這些預期成果在個體的全人觀點(holistic approach)方面，應要是全面詳盡的，且涵蓋對服
務/支持使用者而言具有意義的要素，並能以一種可信賴且有效的方式加以評估。這些必要條件強調一
種有清楚關聯且有效的概念模型和測量架構。
2.3 概念模型 (Conceptual model)
生活品質概念模型會影響標準化成果類型的發展和評估指標，這樣的模型具有多面向、分層的特
徵，並且同時擁有 etic(普及的,universal)和 emic(受制於文化的,culture-bound)的特性。此分層且多面向
的模型，其不可或缺的特點在於將生活品質概念化為三個組成要素、八個領域、以及文化敏感的指標，
用於透過自我陳述和直接觀察的方式來評估個人成果。此外，此模型假定生活品質會受到個人和環境
因素及兩者的互動所影響，所有人都有相同的要素、且同時具備主觀和客觀的面向。此概念模型的跨
文化效度(cross-cultural validation)是由 Jenaro 等(2005)、Gemoz, Verdugo, Arias 和 Arias(2010)、Schalock
等(2005)以及 Wang 等(2010)所建立。
表一：生活品質的概念模型
組成要素定義和例子
QOL 要素更具次序的組成(例如獨立、社會參與和福祉)
QOL 領域定義 QOL 的多面向性的一系列要素
 個人發展和自我決定
(獨立)
 人際關係、社會融合、權利
(社會參與)
 情緒、生理、物質福祉
(福祉)
QOL 指標定義各個 QOL 領域之操作性意義的 QOL 相關概念、行為和條件
 個人發展：ADLs 和 IADLs
 自我決定：選擇、決定和掌控

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 人際互動：社會網絡友誼
 社會融合：社區融合/參與
 權利：人權和法律
 情緒福祉：安全和保障
 生理福祉：健康和營養狀態
 物質福祉：經濟狀態、就業情形
指標項目評估個人成果的具體項目，依據個人意識到的福祉(「自我報告」)，
或是對於個人生活經驗和境遇的客觀指標(「直接觀察」)
2.4 測量架構 (Measurement framework)
表二的測量架構是整理歸納自 Brown and Brown (2003), Claes et al. (2009),De Waele, van Loon,
Van Hove, and Schalock (2005), Schalock, Keith, Hoffman, and Karan (1989), Schalock and Verdugo (2002)
以及 Verdugo, Schalock, Keith, and Stancliffe (2005)的出版品。表二所呈現的測量架構以及表一所歸納
出的概念模型，被用來發展三個標準化的生活品質評估工具，提供第三部分中應用以實證為基礎之成
果的三個案例。關於信度(內在一致性/alpha 係數以及回答者間信度)和效度(內容、建構和同時效度)
的具體細節，我們可以從以下三個案例中看見：Bonham, Basehart, Schalock, Marchand,Kirchner,和
Rumenap (2004)的「Ask Me！」調查，和 van Loon, Van Hove, Schalock,和 Claes (2010)的個人成果量表，
以及 Edmonton PDD (2011)的「我的生活：個人成果指標(My Life：The Personal Outcomes Index)」。
表二：生活品質的測量架構
1. 以 QOL 的概念架構為基礎，如表一所示。
2. 聚焦於個人成果，此成果是個人定義(person-defined)且重視的嚮往，且依據 QOL
領域和指標進行測量。
3. 評估工具的設計和管理包含障礙者的參與。
4. 同時測量主觀(亦即意識層面)和客觀(亦即生活事件和境遇)的指標，選擇特定指
標項目的判準為：反映人們在其生活中想要什麼、與現行及未來的政策議題有
所連結、可被用於報告和品質改善過程、服務提供者擁有部分掌握、和不同診
斷的團體和非障礙者有關。
5. 對於 QOL 領域和指標中的 etic(普及的)和 emic(受制於文化的)特性具有敏感度。
6. 併入系統觀點，在微視、居間、鉅視系統層次上，取得對障礙者個體有影響的
多元環境樣貌。
7. 使用多變量研究設計，針對個人和環境變項對已評估之 QOL 相關成果變項造
成的影響，進行評估。

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3. 運用 EBOs 的案例 (Examples of the use of evidence-based outcomes)
3.1 政策決定 (Policy decisions)
每年進行一次的「The Ask Me!」調查，以成年人為樣本，試圖提供範圍涵蓋整州的系統層次之
生活相關品質，以及至少每四年調查一次各社區組織的生活相關品質資料(data)。此調查並不是為了
要提供相關資料給個別支持計畫，「The Ask Me!」調查來自馬里蘭州的自我倡議者，對其有重要意義。
它可以用於評估表一中八個 QOL 領域的指標。該調查每年執行並以成年人為樣本，此樣本有兩階段
的機率設計(probability design)，第一階段依據各個組織總共服務的成年人數量進行挑選，前十大的組
織(350 人以上)會被納入這個以四年為一期、每年執行的調查，其中這些組織提供服務給三分之一的
DDA 人口群。從數量排名第十一開始起算的 22 個組織(135-329 人)以隨機分派的方式於單數年或雙數
年會進行訪談，其提供服務給其餘三分之一的 DDA 人口群。其餘約 100 個組織(10-134 人)，以隨機
分派的方式，於四年內的其中一年進行訪談。服務對象為 10 人以下的組織或財政實體(fiscal entities)
未被列為樣本，但因此排除的 DDA 人數並未超過 0.5%。從各個組織中選出的 40 個人，會在第二階
段的抽樣中隨機再選出 30 人。組織層次的資料分析並不需要加權(weights)，因為組織內所有回答者
(respondents)皆擁有相同機率被抽到。而組織層以上的層級，其資料分析則包含加權，併入組織被抽
中的機率、組織內個人被選中的機率、組織的回答率(response rate)以及可能被選中個人來自的不同組
織之數量。成年服務對象平均從 1.25 間組織中獲得支持。此一兩階段的樣本每年共包含來自 45 個社
區組織的 1,500 人，而母體為總共 150 間組織中接受支持的 12,000 人。
所有訪談皆由受過訓練的同儕訪員(peer interviewer)在非公開場合進行，訪員通常是兩兩一組，
僅需要一人能閱讀題目，另一人紀錄當事人的回答，並協助營造讓當事人舒適的氛圍。首先，訪員會
依據一份含六個問題的表格來判斷當事人是否能真正給予告知後同意，如果不行，則由另外兩位與該
當事人熟識者作為受訪者。一般來說，同儕訪問團隊會先訪問提供該名當事人支持的主要員工，再來
同儕電話訪問員會打電話給參與該名當事人生活的家庭成員，做為第二位受訪者，若沒有辦法詢問到
家人，則打電話給一位住宿單位的員工。對於無法給予告知後同意並為自己回答的當事人而言，上述
兩位受訪者的回答所計算出的平均值，則代表該當事人的生活品質。同儕訪員的判斷中，77%的成年
當事人可於個別訪談中自己回答問題，其中有五分之一的成年當事人為極重度智能障礙(profound
intellectual disability)，有二分之一是重度智能障礙(severe intellectual disability)。研究者確保回答者所
講的內容會予以保密，且訪談內容不會影響他們所接受的服務和支持。保密、隱私、和受過訓練的同
儕訪員提高資料的效度，因為其減少了文獻回顧中提到訪談環境和受訪者默許的問題。
各個組織會收到其服務對象的 QOL 資料，資料有三種格式：圖表(各個組織與馬里蘭州當年 QOL
平均值的比較，與各組織過去的 QOL 平均值)、次數分配圖(調查問卷的答案)以及表單(spreadsheet)(各
個身分未確定的資料)。年度報告會送至 DDA，以及將調查結果放置於網站上，呈現系統層級的總體
資料(aggregate data)，提供詳細的部分分析和建議，並在報告的附件中放入一頁個別組織資料的摘要。
當組織對於理解和解讀其資料請求協助時，「Ask Me!」的員工也會提供相關諮詢。

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在組織層級上，透過標準化 EBOs 的蒐集和報告，讓組織能夠運用相關資訊進行政策和方案發
展，並且與其他組織進行對照，彼此互相學習。另外，透過這些資訊，組織能使員工意識到 EBOs 的
價值和使用，並且達到該州對於品質保障計畫(quality assurance plan)的要求。而在系統層級上，馬里
蘭州的 DDA 運用每年的調查結果，按該州要求的預算過程訂定目標，並以此測量其目標的達成情形。
調查結果顯示，過去八年以來，馬里蘭州的整體生活品質有逐步提升，特別是在個人發展(personal
development)、自我決定(self-determination)與權利(rights)的領域，上述三個領域是 DDA 根據調查結果
進而著重加強的部分。
3.2 管理決定 (Management decisions)
亞伯達省 ( 位於加拿大西部 ) 於 2005 年發起公部門責信運動 (public sector accountability
movement)，以鼓勵政府補助的組織和機構能促進以成果為基礎(outcome-based)的工作環境。埃德蒙頓
( 亞伯達省的首府 ) 發展障礙者社區委員會 (the Edmonton Community Board for Persons with
Developmental Disabilities)(PDD)為一個皇家代理機構(Crown agency)，針對提供發展障礙者支持的社
區組織給予政府補助。其於 2006 年展開一個關於生活品質測量的先導型計畫(pilot project)，此計畫使
「我的生活：個人成果指標(My life：Personal outcomes IndexTM
)」此一生活品質評估工具有所發展和
標準化。如同前述「The Ask Me! 調查」所提及(詳見 3.1)，此評估工具是以表一和表二所歸納的概念
模型與測量架構為基礎，並且運用和「The Ask Me! 調查」相同的行政程序(administration procedure)(詳
見 3.1)。由外部研究單位(external research firm)提供機構(agency)EBOs 的相關資訊，內容包括個別化
服務提供者在八個 QOL 領域上，加總的個人生活品質成果數據。各面向的分數以 0 到 10 的量尺分數
計算，其中 0 代表低生活品質，10 代表高生活品質。如同表三(左欄)所示，亞伯達省區域的一間組織
(天主教社會服務,Catholic Social Service, CSS)所服務的成年當事人之生活品質分數中，平均分數最低
為 5.63 分的「社會融合」面向，最高分的為平均 8.67 分的「物質福祉」領域。這些資料被用來管理
發展和實施個別化支持策略的相關決定，以及導入品質改善策略，以加強生活品質分數較低的「自我
決定」、「權利」、「社會融合」領域。
CSS 為了要協助評估其每個機構的分數報告，它聯繫霍華德研究(Howard research)以進行一般民
眾調查(general population survey)，藉此比較 CSS 所提供支持的對象與一般民眾的 QOL 資料。一般民
眾調查增加了一題關於交通(transportation)的問題，並從埃德蒙頓地區中隨機抽樣出 403 位年齡為 18
歲以上的居民為樣本，其使用電腦輔助電話訪問(Computer-Assisted Telephone Interviewing, CATI)系
統，另外，為了確保有登入和未登入電話簿的號碼都能包含於樣本中，因而使用隨機撥號法(random
digit dialing, RDD)產生電話號碼。一般民眾調查的回答率是 11%(分母為嘗試聯繫之符合資格的所有家
戶總數)，合作率(cooperation rate)是 23%(分母為成功聯繫且符合資格的所有家戶總數)。如表三所示(右
欄)，埃德蒙頓一般民眾的生活品質分數在各個領域中，最小為平均 6.5 分的「社會融合」，最高為平
均 8.9 分的「權利」，社區民眾明顯在「個人發展」、「自我決定」、「權利」以及「社會融合」領域上分
數較高。

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表三：加拿大亞伯達省埃德蒙頓地區，CSS 服務之成人與一般民眾在「我的生活：個人成果指標(My
life：Personal outcomes IndexTM
)」之生活品質分數比較
領域
CSS 平均分數
(n=298)
一般民眾平均分數
(n=403)
物質福祉 8.67 7.6
情緒福祉 8.39 8.1
生理福祉 7.82 7.7
人際關係 7.32 8.5
個人發展 7.27 8.1*
自我決定 6.29 8.8*
權利 6.91 8.9*
社會融合 5.63 6.5
*
p<0.05.
上述個案(client)和社區(community)的資料中可以發現一個值得關注的趨勢，個案在福祉領域(情
緒福祉、生理福祉、物質福祉領域)較一般民眾的分數高。此一結果是在預料之內，因為 CSS 一直以
來都使用較傳統的社區復健模型來支持個別障礙者，聚焦於個案照顧、安全和福祉。另一個原因可能
是 CSS 所支持的對象中，三分之一的人有代理回答者。「The Ask Me！」調查中發現代理回答者在生
理福祉和情緒福祉的分數較當事人自己回答者的分數高。
由於組織間有相同的概念和測量架構(為可比較、以證據為基礎之成果的類別)，現在亞伯達省的
組織可以和同僚分享其如何運用生活品質調查結果改善其提供的服務。雖然組織一開始會有些不願意
與其他服務提供者分享自己的分數結果，但隨時間過去，組織開始討論他們共同彼此交流的方式，包
括 CSS，針對一些得分較低的面向，與其他分數較高的組織合作，找到能改善其服務的新方法。關於
CSS，其重新將焦點放在策略的優先順序上，重新檢視其服務輸送模型，以及分析其員工訓練和招募
的方法，以強化對個案在「社會融合」、「自我決定」和「權利」生活品質領域的支持。此外，他們也
關注員工的面試問題，包含員工如何支持個人成為公民並完全融入社區且自我決定。員工訓練課程也
被重新調整，以納入更多「人權」取向的服務輸送方式，並與埃德蒙頓中社會參與領域得分較高的組
織協議，請該組織的員工在權利和社會融合上，針對 CSS 員工進行訓練和督導。另外，已取得的 EBOs
提供亞伯達省的服務提供者一個有效且可信賴的方式來蒐集證據，可被用於和其他為了有效性、溝通
(communication)、動機(motivation)、組織改變(organizational change)的資料一同分析。將 EBOs 運用在
整體績效管理架構中，使機構能夠做出以實證為基礎的決定，以此改善組織效能(efficacy)和效率
(effectiveness)，並展現其本身的服務並非在最終階段(end game)，而是一種達成目的的手段，目的是
要以服務使用者的觀點來改善生活品質。一些類似 CSS 的組織不再如同過去是測量投入和產出，而是
使用個人成果資料來測量組織究竟如何影響這些對象的生活。多數的組織期待有能力做出以實證為基

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礎的決定，若要達成，這些機構需要具備有效且可信賴的工具進行資料蒐集和分析，將這些分析內容
與其策略計劃過程結合，並將這些以實證為基礎的資料轉化為執行計畫(operating plan)和實行
(implementation)，測量改變所帶來的影響以改善成果，並且在持續的品質改善循環中再重新執行。
3.3 臨床決定 (Clinical decisions)
Arduin 建立一組織架構，此架構將焦點放置於改善個人層次上以實證為基礎之成果。Arduin 是
一間荷蘭組織，提供 740 名智能障礙者生活、日常活動和工作的支持服務，其中有 510 名接受 24 小
時之服務/支持。15 年前，Arudin 從以機構為中心(a facility-centered)服務，轉變為生活品質架構中以
社區為基礎的個別化支持方式。
Arduin 之所以選擇聚焦於生活品質而非照顧品質，目的是要確認組織在增進個人成果上之所需為
何。在照顧品質中，相較於個案(client)觀點，員工和機構的觀點通常更具影響力。照顧品質系統常會
著重在較容易達成和測量的結果，這表示以價值為基礎的評估(value-based evaluation)未被普遍接受。
雖然組織自稱知道其每個服務的目標，然而照顧品質系統並無法保證服務可以增進生活品質領域，例
如社會融合、自我決定和個人發展。如此使損傷、類別化(categorization)、同質團體、健康與安全以
及控制經常被強調。對於照顧品質策略的主要擔憂通常在於其過程，這樣的過程常使組織投入許多時
間和心力在垂直結構(vertical structure)和安排。
組織的主要信念是根據組織對生活品質以及個別化支持的投入，這樣的信念是：(a)障礙者的生活
品質是由特定的相同要素組成(即核心領域)，而且關係對於所有人而言是重要的；(b)透過充權個人，
使當事人得以參與影響自身生活的決定，如此可以增進生活品質；(c)生活品質可透過接納以及讓當事
人完全融入當地社區加以強化；(d)個別化支持的提供，可以增進生活品質。
Arduin 將生活品質之促進納入到組織策略和實務中，且將消費者視為重要角色和參與也成為極其
重要的組織策略。關鍵問題在於消費者針對其個別化服務計畫(ISP)發展和執行上的參與程度。Arduin
建立一個個別化支持系統：以個人為中心的(person-centered)(亦即以個人利益(interests)、喜好、需求
和自然支持系統為基礎)；具回應性的(responsive)(亦即，將個人和支持計畫參與者的討論對話作為基
礎)；在生命歷程中是可彈性調整的；積極主動的(proactive)(亦即使公民有均等的機會、充權個人、達
成有效社會融合以及增加社會/社區參與)；以資料為依據(亦即以支持需求的評估模式和強度為基礎，
並且評估個人生活相關品質成果)。
個別化支持計畫的成果應要能促進生活品質，是否能出現這樣的成果，需要可信賴且有效的生活
相關品質面向的評估。為達到上述目的而建立個人成果量表(The Personal Outcomes Scales, POS)，此
量表同樣以表一和表二所整理之概念化模型和測量架構為基礎。個人成果量表包含自我報告(Self
Report)和直接觀察(Direct Observation)，兩種版本都由受過良好訓練且有合格證書的訪員執行訪談，
在訪員和個案訪談中完成自我報告，並和家長、直接支持工作者、專業人員進行訪談以完成直接觀察。
其中，訪談個案中有 67%是由障礙者本人完成。個人成果量表(POS)中，每個生活品質(QOL)領域都各
有六個項目。為了能進行比較，自我報告與直接觀察兩個版本的每個項目都是相同的。POS 最後的結

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果會顯示在自我報告和直接觀察兩部分中，針對三個要素和八個領域(見表一)的分數。而 POS 之心理
計量特性(psychometric properties)公布於 POS 網站上的使用手冊中(www.poswebsite.org)。
Arduin 的方案中，這些以實證為基礎之成果的運用包含了多元目的，例如透過個人支持計畫來評
估以個人為中心的計劃之成果。在以個人為中心的支持系統中，能夠將個人期待和目標、從支持強度
量表(Supports Intensity Scale)測得的個人支持需求、個人支持計畫(ISP)以及透過 POS 測得的個人生活
品質，調整為一致。
將期待與目標、經評估後之支持需求、個人支持計畫之形成要素以及生活品質成果一併運用之
下，創造極佳的機會以做出適切的臨床決定，支持人們有方法地改善其生活品質。在 Arduin，此支持
系統上是運用網路進行電子化訊息傳遞，更確切地說，是將個案的 POS 分數紀錄於網路應用程式，
並且能以不同方式加以描述。這些數據的加總，提供個人、組織方案、或整體組織相關的 EBO 資訊。
舉例來說，在 Arduin 的管理資訊系統中，POS 的結果可以隨時以原始分數，或各別個案、方案或整
體組織的百分比加以呈現，在任何時間點都可以進行比較。而這些資訊透過密碼加以保護，且只有組
織中被授權的人才可以取得。
舉例而言，一位參與個人支持服務的心理學家可以從個人 POS 檔案中，檢視 QOL 資料(以原始
分數的形式)，並且將這筆資料和組織的其他個案進行比較(以百分比的分數形式)。在應用於 ISP 的訂
定上，個人助理作為共同規劃 ISP 的人，會上網查看該當事人的 POS 資料。個人助理的工作是要和當
事人或法定代理人討論，並用這些資訊來改善 ISP。第二個例子，負責人可以查看某一區域所有個案
的 QOL 平均分數(原始分數)，以及這些分數和同一組織中其他個案的關聯(百分比分數)。這些資料對
於分析和討論是重要的，可以用於品質改善，例如討論該區域的員工尚需具備其他哪些能力。第三，
我們可以檢視組織所有個案的平均 QOL 分數(原始分數)。這些資料同樣對於品質改善策略十分重要，
上述策略聚焦在組織策略和改變、一般員工所需具備的其他能力、需要為個案和員工所設計的課程、
以及個人成果預估的重要測定(determination of the significant predictors of personal outcomes)。最後，將
這些 POS 資料用作為品質管理模型的關鍵結果是重要的，例如歐洲品質管理基金會(European
Foundation on Quality Management)中的 EFQM 卓越模型(EFQM Excellence model)。
總結而言，上述提及的三個案例呈現國際間組織和系統將 EBOs 應用於政策、管理和臨床議題。
這些用途作為以實證為基礎之實務的一部份，依據明確連結且有效的模型(詳見表一)和測量架構(詳見
表二)所建立之有信效度的評估方法，產生可靠的資料來源，並從這些資料來源當中獲得最佳證據作
為基礎。除了提供上述討論之三個案例可信賴且有效的資訊之外，EBOs 的發展和運用亦以不同形式
對智能障礙領域產生重大影響。
其中一個 EBOs 所帶來的影響是，改變我們對於心智障礙者生活品質之比較標準的想法，了解真
正的比較標準是社區，而不是個人、組織或系統。透過這樣的觀點，我們開始將智能障礙者的生活相
關品質成果，與在同一社區中的非障礙者進行比較，其中一個相關的比較研究是在荷蘭，將 Arduin
方案的個案和鄰近社區進行 POS 的比較，其結果呈現於表四。表三與表四中服務使用者和非障礙者
的顯著差異，意味著系統、組織策略和實務，應要以試圖接近或達成社區標準為重心。

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隨著以實證為基礎之成果的發展，在設法降低臨床、管理和政策決定所產生如表三與表四呈現的
差異上，現在我們是處於一個較佳的位置。然而，要做到上述事項，是需要組織和系統共同努力，將
其在個人、組織和系統層級上的投入、運作和成果/產出的組成要素調整為一致，並且執行下一節討論
的指導方針。
表四：荷蘭居住於相同區域之智能障礙者以及非障礙者，其個人成果量表中的生活相關品質成果
生活品質領域
智能障礙者之
平均分數和標準差
(n=186)
非障礙者之
平均分數和標準差
(n=291)
個人發展 12.4 (2.6) 16.4 (1.6) *
自我決定 13.2 (2.6) 16.9 (1.2) *
人際關係 12.7 (2.6) 16.6 (1.6) *
社會融合 9.1 (2.1) 14.1 (2.3) *
權利 13.1 (2.1) 17.1 (1.2) *
情緒福祉 14.9 (2.2) 16.4 (1.8) *
生理福祉 14.5 (2.0) 15.7 (2.1) *
物質福祉 14.1 (1.7) 14.7 (2.2)
*
p<0.05.
4. 發展與使用 EBOs 的指導方針 (Guidelines for developing and using evidence-based
outcomes)
根據上述作者所提及國際管轄區域的經驗，以及 Bonham et al.(2004)以及 Claes, Van Hove,
Vendevelde, van Loon 與 Schalock (2010),Schalock(2008)和 Schalock 與 Verdugo(2012a,2012b)的作品，針
對 EBOs 的發展與使用，我們提出十個指導方針，整理於表五。
表五：發展和使用以實證為基礎之結果的指導方針
1. 以實證為基礎之成果必須在個人層次被測量，盡可能當事人能為自己回答。資料可
以運用在個人、組織和系統層級之分析，但除非有明確的保護措施能適切保障回答
者的權利和福利，否則資料紀錄必須確保個人的匿名性。
2. 最佳實務是運用發展且標準化的成果測量工具。這些最佳實務為：(a)量表發展是根
據有效的概念和測量架構；(b)其測量方法是根據理論且歸納發展自理論；(c)項目(或
領域指標)是以一種合乎方法論的方式加以執行，包括不同的利害關係人之焦點團
體；(d)由資料分析和回饋來引導發展過程。
3. 以實證為基礎之成果所依據的評估工具，能完善地反映於社會認可的信度和效度。

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4. 以實證為基礎之成果所依據的評估工具是：能展現出效用，因為可以被使用於多元
目的，且與評估方案或組織在個人成果效率與組織產出效能有密切相關。
5. 量表的 etic(普及的)與 emic(基於文化的)特性是需要被呈現的。
6. 以實證為基礎之成果是取自於一種評估工具，這樣的評估工具是由受過訓練的調查
員所管理，調查員包含智能障礙者。
7. 評估和使用以實證為基礎之成果，是組織自我評估和持續品質促進過程的一部分。
8. 運用以實證為基礎之成果的組織，是能夠接受改變且具有學習的特徵。
9. 以實證為基礎之成果應紀錄於個人層級，或加總至組織或系統層級。
10. 以實證為基礎之成果的使用，不應該只用於單一的特定時間點，而是做為策略計畫
和持續品質改善之間的標竿。
這些指導方針回應了部分學者對於私部門所採用的技巧、以及公部門和非營利組織以成果為基礎
之評估的擔憂。
資料蒐集程序被強調一定要於個人層級進行，盡可能讓個人能為自己作答。然而，如同三個案例
所呈現，個人成果資訊有多元的運用方式：在個人層級上以促進以實證為基礎的臨床決定(例如改善
個別化支持計畫)，在組織層級上以進行持續品質改善(用於策略規劃過程、運作計畫以及執行，為一
個持續的品質改善循環)，以及在系統層級上以用於政策決定(例如國家預算進程所需的系統目標，並
用調查結果加以測量目標的達成情形)。
這些反映出，對於成功運行組織管理系統而言，運用一個發展完善、健全的、有效且適合特定組
織脈絡的工具，是最有效的因素之一。
5. 使用 EBOs 的相關挑戰 (Challenges involved in the use of evidence-based outcomes)
組織和系統可以運用以實證為基礎之成果來增進其效率和效能。然而，有許多隨之出現的挑戰需
要被克服。首先，政策決策者和組織管理者應要意識到當中涉及的成本。以實證為基礎之成果是於個
人層級所進行的訪談結果。在「Ask Me！SurveySM
」和「我的生活：個人成果指標(My Life：The Personal
Outcomes IndexTM
)」兩個案例中，是委由代理機構進行此項工作，而在 Arduin 個人成果量表此一案例，
則是聘僱一位全職的專業人員進行訪談。
第二，利害關係人的心理模式和思維是需要被改變的。很多時候政策制定者和管理者主要會關注
於照顧品質的投入和過程，然而 EBOs 是聚焦於成果。如同在 Arduin 的案例中所見，這樣的情況需要
在服務上有大幅度的改變，改為在生活品質架構中，一種更為個別化的方法。相似地是，組織需要學
習如何將成果融入至其服務輸送系統中的投入和產出要素，並使其一致。
第三，對於「成效管理(Management for results)」行政和監管上的擔憂需要加以克服。管理研究
顯示，組織經常不會好意使用非常複雜的工具，因為過程的複雜性、缺乏熱忱以及對於特定執行策略
相關知識的不足。因此，許多機構雖然會評估績效，但卻無法運用以實證為基礎之成果以支持策略計

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畫和財務管理。
最後，重要的是，組織和其員工應要具備相關知識，進而運用以實證為基礎之成果的工具，使用
其蒐集而來的資料。對於組織在有效執行以實證為基礎之成果上，提供員工訓練是有助益的決定因
素。另外，不可或缺的是，對於認真運用以實證為基礎之成果的組織，需要去發展資訊管理系統，以
進行電子資料蒐集、分析以及紀錄。

244

The use of evidence-based outcomes in systems and
organizations providing services and supports to persons with
intellectual disability
Jos H.M. van Loon a,b,c, Gordon S. Bonham d, Dale D. Peterson e, Robert L. Schalock f,
Claudia Claes g,h, Adelien E.M. Decramer g,h
a Arduin Foundation, The Netherlands
b Ghent University, Belgium
c University College Ghent, Belgium
d Bonham Research, Mars, PA, USA
e Catholic Social Services, Canada
f Hastings College, NE, USA
g University College Ghent, Belgium
h Ghent University, Belgium
1. Introduction and overview
This article describes how evidence-based
outcomes (EBOs) can be used to improve clinical,
managerial, and policy decisions. Evidence-based
outcomes are defined as measures obtained from
the assessment of quality of life domain-referenced
indicators that: (a) are based on a cross-culturally
validated QOL conceptual and measurement model
(Schalock et al., 2005; Wang, Schalock, Verdugo, &
Jenaro, 2010); (b) have utility in that they can be
used for multiple purposes (Schalock, Verdugo,
Bonham, Fantova, & van Loon, 2008; van Loon,
Claes, Van Hove, & Schalock, 2010); and (c) have
robustness in reference to the reliability and validity
of the assessment strategy employed (Claes, Van
Hove, van Loon Vandevelde, & Schalock, 2009).
EBOs are a critical component of evidence-based
practices (EBPs) that are defined as practices that
are based on current best evidence that is obtained
from credible sources that used reliable and valid
methods and a clearly articulated and empirically
supported theory or rationale (Scha-lock, Verdugo,
& Gomez, 2011).
Although related, evidence-based practices and
evidence-based outcomes should not be equated to
program planning, manage-ment, and evaluation
models such as those typically referred to as
program logic or total quality management models.
Program or production models, stress the alignment
of an organization or system’s input, throughput,
and output/outcome components. A program logic
model can be used to assure program alignment and
evaluate the results or impacts of an organization or
system (Bouckaert & Van Dooren, 2003; Pollitt &
Bouckaert, 2004; Schalock & Bonham, 2003). In
distinction, a total quality management model, such
as the European Excellence Model and its related
Common Assessment Model (CAF), can be used
for purposes related to capturing the unique features
of public section organizations, serving as a tool for
public administration to improve organization
performance, acting as a bridge across the various
models used in quality management, and facilitating
benchmarking between public sector organizations
(http:// www.eipa.eu). Evidence-based practices and
evidence-based out-comes relate, respectively, to
the throughput and output/outcome components of
a program logic model, and to the processes and
citizen/customer results components of a total
quality manage-ment model such as the CAF.
The present article focuses on the application
of evidence-based outcomes to the assessment and
use of quality of life-related personal outcomes that
are increasingly being used in program planning

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and evaluation, policy development, and systems
change (Schalock, Gardner & Bradley, 2007;
Schalock & Verdugo, 2012a, 2012b; Schalock et al.,
2008). Quality of life (QOL) is a multidimensional
construct that has been applied across individ-uals,
organizations, and systems. The construct is
increasingly impacting the redefinition of
organizations and the services and supports they
provide to persons with intellectual and closely
related developmental disabilities. Because of this
impact, it is essential that EBOs are both
understood and incorporated into best practices
(Schalock & Verdugo, 2012b).
The article has four sections. First, we describe
the evidence-based outcome model developed by
the authors and international colleagues to depict
the key steps in the conceptualization and
measurement of evidence-based outcomes. The
major focus of this international project is to define
evidence-based practices, to develop outcome
measures and standards for their evaluation and use,
and to begin to evaluate the impact on services and
supports provided to persons with intellectual
disability (Claes, Vandevelde, Van Hove, &
Broekaert, submitted for publication; Claes, Van
Hove, van Loon, Vandevelde, & Schalock, 2012;
Schalock et al., 2011). Second, we provide
examples of how three international jurisdic-tions
(Canada, The Netherlands and the United States)
have used EBOs for policy, managerial, and clinical
decisions. The article concludes with a discussion
of guidelines regarding the develop-ment and use of
EBOs and challenges involved in their use.
2. Evidence-based outcomes model
Our evidence-based outcomes model involves
identifying the intended uses of outcome
information, selecting the intended outcomes that
will be used, developing a conceptual model
regarding specific outcome categories and objective
indicators, using a measurement framework to
assess the specific outcomes, and judging the utility
of their intended use based on the evidence-based
outcomes. This model, depicted in Fig. 1, is based
on the evidence-based practices model by Schalock
et al. (2011).
2.1. Intended use
EBOs can be used at the microsystem
(individual), mesosystem (organization) and
macrosystem (state, region and province) levels
of a service delivery system. At the
micro/individual system level, EBOs can be
used for clinical decisions regarding the
provision of individualized education and
rehabilitation services and supports. At the
meso/organization level, they can be used for
multiple purposes that include program
development, reporting, monitor-ing, evaluation,
and continuous quality improvement. At the
macro/state-region level, EBOs can also be
used for reporting, monitoring, evaluation, and
continuous quality improvement.
2.2. Intended outcomes
The specific outcomes selected will
depend on the organization or system’s goals
and objectives and the personal goals of
individuals receiving services and supports
from the respective organization or system.
These intended outcomes should be
comprehensive in regard to a holistic approach
to individuals, contain elements that are
meaningful to all service/support recipients, and
can be assessed in a reliable and valid manner.

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These requirements underscore the importance
of a clearly articulated and validated conceptual
model and measurement framework.
2.3. Conceptual model
A quality of life conceptual model can
guide the development of standardized outcome
categories and their assessed indicators. Such a
model is characterized by its being
multidimensional, hierarchical, and has both
etic (universal) and emic (culture-bound)
properties. Table 1 summarizes these
characteristics in terms of components (left
column) and definition and examples (right
column). The essential feature of this
hierarchical, multidimensional model is that
Table 1
Quality of life conceptual model.
Component Definition and examples
QOL factor Higher order construct (e.g.
independence, social
participation, and well-being)
QOL domains Set of factors defining
multidimensionality of QOL
 Personal development &
self-determination
(independence)
 Interpersonal relations,
social inclusion, rights
(social participation)
 Emotional, physical,
material well-being
(well-being)
QOL indicators QOL-related perceptions,
behaviors and conditions that
define operationally each
QOL domain
 Personal development:
ADLs and IADLs
 Self-determination:
choices, decisions, control
 Interpersonal relations:
social networks
friendships
 Social inclusion:
community
integration/participation
 Rights: human and legal
 Emotional well-being:
safety and security
 Physical well-being:
health and nutritional
status
 Material well-being:
financial status,
employment
Indicator items Specific items used to assess
personal outcomes on the
basis of perceived well-being
(‘self report’) or an objective
indicator of the person’s life
experiences and
circumstances (‘direct
observation’)
Table 2
Quality of life measurement framework.
1. Is based on a QOL conceptual framework
such as that shown in Table 1.
2. Focuses on personal outcomes that are
person-defined and valued aspirations and
measured in reference to QOL domains and
indicators.
3. Involves persons with disabilities in the
design and administration of the assessment
instrument.
4. Measures both subjective (i.e. perceptual)
and objective (i.e. life events and circumstances)
indicators. Criteria for selecting specific
indicator items are that they: reflect what
people want in their lives, relate to current and
future policy issues, are those that the service
provider has some control over, can be used for
reporting and quality improvement purposes,
and are relevant to different diagnostic groups
and persons without disabilities.
5. Is sensitive to both the etic (universal) and
emic (culture-bound) properties of the QOL
domains and indicators.
6. Incorporates the systems perspective that
captures the multiple environments impacting

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individuals with disabilities at the micro, meso,
and macrosystems levels.
7. Uses multivariate research designs to
evaluate the influence that personal and
environmental variables have on assessed
QOL-related outcome variables.
quality of life is conceptualized as being
composed of three factors, eight domains, and
culturally sensitive indicators that are used to
assess personal outcomes on the basis of
self-report and direct observation. Furthermore,
the model is based on the premises that one’s
quality of life is influenced by personal and
environmental factors and their interactions, has
the same components for all people, and has
both subjective and objective aspects. The
cross- cultural validation of this conceptual
model is found in Jenaro et al. (2005), Gomez,
Verdugo, Arias, and Arias (2010), Schalock et
al. (2005), and Wang et al. (2010). The
importance of this conceptual model is that it
provides the firm foundation for the reliable and
valid assessment of EBOs that can be used for
the intended purposes indicated above.
2.4.Measurement framework
The measurement framework summarized in
Table 2 is based on the published work of
Brown and Brown (2003), Claes et al. (2009),
De Waele, van Loon, Van Hove, and Schalock
(2005), Schalock, Keith, Hoffman, and Karan
(1989), Schalock and Verdugo (2002), and
Verdugo, Schalock, Keith, and Stancliffe (2005).
The measure-ment framework presented in
Table 2 and the conceptual model summarized
in Table 1 have been used to develop three
standardized quality of life assessment
instruments providing the evidence-based
outcomes used in the three examples presented
in Section 3. Specific details about the
reliability (internal consistency/alpha
coefficients and inter-respondent) and validity
(content, construct, and concurrent) can be
found for the Ask Me! Survey in Bonham,
Basehart, Schalock, Marchand, Kirchner, and
Rumenap (2004), for the Personal Outcomes
Scale in van Loon, Van Hove, Schalock, and
Claes (2010), and for the My Life: The Personal
Outcomes Index in Edmonton PDD (2011).
3. Examples of the use of evidence-based
outcomes
1.1.Policy decisions
The Ask Me! Survey, which is conducted
annually using a sample of adults, is intended to
provide statewide system level quality of
life-related data every year, as well as quality of
life-related data for each community
organization at least once every four years. The
survey was not intended to provide data for
individual support plans. The Ask Me!
SurveySM was developed based on what
Maryland self-advocates identified as import to
them. It assesses indicators of each of the eight
QOL domains shown in Table 1. The Survey is
conducted annually using a sample of adults.
The sample has a two-stage probability design.
The first stage involves the selection of
organizations based upon the number of adults
they support. The 10 largest organizations
(350+ adults), who provide support to one-third
of the DDA population, are included in the
survey every year of the four-year cycle. The
next 22 large organizations (135–349 adults),
who provide support to an additional one-third
of the DDA population, are randomly assigned
for interviews during even or odd years. The
approximately 100 remaining organizations
(10–134 adults) are randomly assigned for
interviews in one of the four years.
Organizations or fiscal entities supporting fewer
than 10 people are not included in the sample,
but this excludes less than 0.5% of the DDA
population. Forty people from each selected
organization are randomly selected in the
second stage of sampling, with the expectation
that 30 interviews will be completed. Data
analysis at the organization level does not
require weights, as all respondents within an
organization have the same probability of

248

selection. Data analysis above the organization
level involves weights that incorporates the
probability of an organization being selected,
the probability of a person within an
organization being selected, the response rate at
the organization, and the number of different
organizations through which an individual can
be selected. Adults receive support from an
average of 1.25 organizations. The twostage
sample includes about 1500 individuals each
year at 45 community organizations from a total
population of about 12,000 individuals
supported by 150 organizations.
All interviews are conducted in private by
trained peer interviewers, usually working in
teams of two that requires only one to be able to
read. The other team member records answers
and helps make the setting comfortable for the
respondent. The interviewers first use a
six-question form to judge whether they believe
the individual can give informed consent. If not,
two respondents are identified who know the
individual well. The peer interviewing team
generally interviews first the primary staff
member who supports the individual. A peer
telephone interview-er then calls a family
member involved in the individual’s life for a
second respondent, or calls a residential staff
member when no family is available. The
responses of the two respondents are averaged
to represent the quality of life of an individual
unable to give informed consent and respond
for his or herself. Peer interviewers judge that
77% can respond for themselves in personal
interviews, including one-fifth of adults with
profound intellectual disability and half of those
with severe intellectual disability. Respondents
receive assurances of complete confidenti-ality
of what they say and that their answers will not
affect the services they receive. Confidentiality,
privacy, and trained peer interviewers increase
the validity of the data by reducing the
problems of the interview context and
respondent acquiescence reported in the
literature (Antaki & Rapley, 1996; Finlay &
Lyons, 2002; Matikka & Vesala, 1997; Rapley,
2000).
Each organization receives QOL data
provided by (or for) the individuals they
support. The data have three formats: charts that
provide comparisons of the organizations
average QOL with the Maryland average for the
year and the organization’s past averages,
frequency distribution of responses to each of
the survey questions, and a spreadsheet with
each unidentified respondent’s data. The annual
report sent to DDA and made available on its
website describes the survey, presents
systemlevel aggregate data, provides some
detailed analysis and recommendations, and
includes a one-page summary of the data for
each organization in the report’s appendix. Ask
Me! staff also provide consultation when
organizations request their assistance in
understanding and interpreting their data.
At the organization level, this collection
and reporting of standardized EBOs allows
organizations to use the information for policy
and program development and to compare
themselves with other organizations so they can
learn from one another. In addition,
organizations use the data for sensitizing their
staff to the value and use of EBOs and to meet
state requirements for quality assurance plans
(Bonham, Volkman, & Sorensen, 2009;
Bonham, Schneider, Volkman, & Sorensen,
2010). At the systems level, the Maryland DDA
uses the survey results every year to establish
system goals as required by the state budget
process, and then uses the survey results to
measure the achievement of those goals. Survey
results show that the overall quality of life has
improved in Maryland over the past eight years,
particularly in domains of personal
development, self-determination, and rights.
These three areas are those that the DDA
emphasized based on survey findings (Bonham
et al., 2010).
1.2.Management decisions

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A public sector accountability movement
in the Province of Alberta was initiated in 2005
to encourage outcome-based operating
environments among government sponsored
organizations and agencies (Howard Research
and Management Consulting, 2006). In 2006,
the Edmonton Community Board for Persons
with Develop- mental Disabilities (PDD), a
Crown agency providing government funding
to community organizations supporting persons
with developmental disabilities, began a pilot
project regarding the measurement of quality of
life. This project led to the development and
standardization of the quality of life assessment
instrument My Life: Personal Outcomes
IndexTM (Edmonton PDD, 2011). This
instrument, as with the Ask Me! Survey just
discussed, is based on the conceptual model and
measurement framework summarized in Tables
1 and 2, and uses the same administration
procedures as described for the Ask Me! Survey
(see Section 3.1). The EBO information
provided to an agency by an external research
firm includes an individualized service provider
profile with aggregated quality of life personal
outcome data for all eight QOL domains. These
domain scores are calculated on a scale from 0
to 10, where 0 represents a low quality of life
and 10 represents a high quality of life. As
shown in Table 3 (left column) quality of life
scores for the adults served by one Edmonton
Region organization (Catholic Social Services
(CSS)) ranged from a low of 5.63 for social
inclusion to a high of 8.67 for material
well-being. These data have been used by
management to make decisions regarding the
development and implementation of
individualized support strategies and to intro-
duce quality improvement strategies to enhance
lower quality of life scores related to
self-determination, rights, and social inclusion.
To assist in assessing the results of its
individual agency report, CSS contracted with
Howard Research to conduct a general
population survey. This allowed CSS to
compare the QOL data reported for the people it
supports with the QOL of the general
population. The general population survey
added one question on transportation, and was
administered to a random sample of 403
residents over the age of 18 years in the
Edmonton area. It used a
Table 3
Comparison of quality of life scores on the My
Life: Personal Outcomes IndexTM for adults
served by CSS and the general population in the
Edmonton area in Alberta, Canada
Domain CSS
average
score (n =
298)
General
population
average score
(n = 403)
Material well-being
Emotional well-being
Physical well-being
Interpersonal relations
Personal development
Self-determination
Rights
Social inclusion
8.67
8.39
7.82
7.32
7.27
6.92
6.91
5.63
7.6
8.1
7.7
8.5
8.1 *
8.8 *
8.9*
6.5*
* p < 0.05..
Computer-Assisted Telephone Interviewing (CATI)
system. All phone numbers were randomly
generated through random digit dialing (RDD) to
ensure that both listed and unlisted phone numbers
were included in the sample. The overall response
rate for the general population survey was 11% (of
the total number of eligible households where
contact was attempted), with a cooperation rate of
23% (of the number of eligible households where
contact was made). As shown in Table 3 (right
column) quality of life domain scores for the
general population in Edmonton ranged from 6.5
for social inclusion to 8.9 for rights. Scores for
members of the community were significantly
higher on the domains of personal development,
self-determination, rights, and social inclusion.
An interesting trend in these clients vs.
community data was that clients reported a higher
quality of life in the well-being factor (emotional,
physical, and material well-being domains) than the
general population. These results were not

250

surprising in that CSS has been using a more
traditional community rehabilitation model to
support individuals with disabilities, focusing on
client care, safety, and well-being. These results
could also be due to a third of the people supported
by CSS had proxy respondents. The Ask Me!
Survey has found that proxy respondents also report
higher physical and emotional well-being than
reported by self-respon-dents (Bonham et al.,
2004).
As a result of organizations having the same
conceptual and measurement framework (with
comparable evidence-based outcome categories)
organizations in Alberta are now able to share with
their colleagues how they intend to use the results
of the quality of life survey to improve the services
they provide. Although initially somewhat reluctant
to share their individual results with other service
providers, over time organizations have begun to
discuss how they can collectively learn from each
other and some organizations, including CSS,
looked for ways to partner with other organizations
that had high domain scores in areas that CSS had
low scores in order to find new ways to improve
their services. In reference to CSS specifically, they
have refocused their strategic priorities, reviewed
their service delivery model, and analyzed their
approach to staff training and recruitment to
strengthen supports to clients in the QOL domains
of social inclusion, self-determination and rights. In
addition, they have focused their hiring interview
questions on how staff can support individuals to be
included as full citizens in the community and to
make their own choices. Staff training curriculum
has also been revised to take more of a ‘‘human
rights’’ approach to delivering services, and CSS
has contracted with another organization in
Edmonton that scored high in the social
participation domains and uses their staff to coach
and mentor CSS staff in rights and social inclusion.
In addition, the obtained EBOs have given service
providers throughout Alberta a valid and reliable
way of gathering evidence that can be analyzed
along with other data for validation, communication,
motivation, and organizational change. Using the
EBOs as part of a total performance management
framework allows agencies to make evidence-based
decisions to improve organizational efficiency and
effectiveness, and demonstrate that service in itself
is not the end game, but a means to an end. The end
is improved quality of life from the perspective of
the persons receiving services. Organizations like
CSS no longer measure inputs and outputs as they
once did, but now use personal outcome data to
measure how well they are truly impacting peoples’
lives. Most organizations want to be able to make
evidence-based decisions. This requires that
agencies have valid and reliable instruments to
collect and analyze data, incorporate this analysis
into their strategic planning process, translate this
evidence-based data into operational planning and
implementation, measure the impact of these
changes to improve outcomes, and then do it all
over again in a cycle of continuous quality
improvement.
1.3. Clinical decisions
Arduin has developed an organization
framework that focuses on improving
evidence-based outcomes at the individual level.
Arduin is a Dutch organization that provides
support services in living, daily activities, and
work for 740 people with intellectual disability,
510 of whom receive 24 h a day
services/supports. Some 15 years ago a shift
took place in Arduin from facility-centered
services to an individualized community-based
supports approach within the quality of life
framework (Van Loon & Van Hove, 2001).
Arduin chose to focus on quality of life
instead of quality of care in order to identify
what an organization needs to do to enhance
personal outcomes. In quality of care, the
perspectives of staff and facility are usually
more influential than the perspectives of the
clients. A quality of care system often places
importance on results that are easy to reach and
easy to measure. This means that value-based
evaluation is less popular. Although
organizations pretend to know what they are
aiming at with every service, the quality of care
system gives no guarantee that services will be

251

implemented to enhance quality of life domains
such as social inclusion, self-determination and
personal development (Van Loon & Van Hove,
2001). This frequently leads to an emphasis on
impairment, categorization, homogenous
grouping, health and safety, and control (De
Waele et al., 2005). The main concern for
quality of care strategies is typically the process,
which frequently allows organizations to invest
a lot of time and energy on their vertical
structures and arrangements (Maes, Geeraert, &
van den Bruel, 2000).
Fundamental beliefs are basic to an
organization’s commitment to a quality of life
and the delivery of individualized supports.
These beliefs are that: (a) the quality of life of
people with disabilities is composed of those
same factors (that is, core domains) and
relationships that are important to all persons;
(b) quality of life is enhanced by empowering
persons to participate in decisions that affect
their lives; (c) quality of life is enhanced by the
acceptance and full integration of persons into
their local communities; and (d) quality of life
is enhanced through the provision of
individualized supports (Brown & Brown, 2003;
O’Brien & O’Brien, 1989; Schalock et al., 2000;
Schalock & Verdugo, 2012b; Vreeke, Janssen,
Resnick, & Stolk, 1998).
Arduin has embedded the improvement of
one’s quality of life in its organization policies
and practices, and the involvement of
consumers in meaningful roles has become an
essential organizational strategy. The key
question is the degree to which consumers are
involved in the development and
implementation of their individual supports
plans (ISP). Arduin developed an
Individualized Supports System that is:
person-centered (i.e., based on the person’s
interests, preferences, needs, and natural
support network); responsive (i.e., based on a
dialog between the person and those involved in
the supports plan); flexible across the life span;
proactive (i.e., equalizing opportunities with
fellow citizens, empowering the person,
generating effective social inclusion, and
increasing social/community participation); and
data based (i.e., based on the assessed pattern
and intensity of support needs and evaluated in
terms of assessed personal, quality of
life-related outcomes).
The outcomes of an individual supports
plan for a person should be an enhanced quality
of life. Determining whether this outcome
occurs requires the reliable and valid
assessment of quality of life- related domains.
The Personal Outcomes Scale (POS; Van Loon,
Van Hove, Schalock, & Claes, 2008), which is
also based on the conceptual model and
measurement framework summarized in Tables
1 and 2, was developed for that purpose. The
POS has a Self Report and a Direct Observation
version. Both versions are administrated in an
interview format by a well-trained, certificated
interviewer. The interviewer completes the Self
Report with the client, and the Direct
Observation ratings with a parent, direct
support worker, or professional. In 67% of the
cases the interview is done with the person
himself or herself. The POS has 6 items for
each QOL domain. For comparability purposes,
the content of each item is the same for the Self
Report and Direct Observation versions. The
POS results in scores for the three factors and
eight domains (see Table 1) from both the Self
Report and the Direct Observation versions.
The psychometric properties of the POS are
published in the manual on the POS- website
(www.poswebsite.org).
The use of these evidence-based outcomes
includes multiple purposes in the Arduin
program such as evaluating the outcomes of
person-centered planning via an Individual
Supports Plan. In the person-centered support
system there is an alignment between the
wishes and goals of a person, his or her support
needs as measured by the Supports Intensity
Scale (Thompson et al., 2004), the Individual
Supports Plan (ISP), and his or her quality of
life as measured with the POS.

252

This alignment among wishes and goals,
assessed support needs, Individual Supports
Plan components, and quality of life outcomes,
creates an excellent opportunity to enhance
clinical decisions regarding how to support
people methodically in improving their quality
of life. In Arduin this support system is
communicated electronically in web-based
applications (Loon, Van Hove, & Schalock,
2009). More specifically, the scores of the
individual clients on the POS are written down
in a web-application and can be depicted in
several ways. These data are aggregated to give
EBO information regarding the individual,
organization program, or the organization as a
whole. For example, the results of the POS
within the Management Information System of
Arduin can, at any moment in time, be depicted
in raw score or percentile for each client, each
program, or for the entire organization.
Comparisons can easily be done between any
point in time. This information is secured
behind passwords, available only to authorized
people within the organization.
From the individual POS profiles for
example a psychologist involved in the support
of a person can see first the QOL profile (in raw
scores), and how this profile compares with the
other clients of the organization (in percentile
scores). In the application to develop an ISP, the
personal assistant who coordinates the
development of the ISP, gets on his/her screen
the POS profile of the person. It is their task to
discuss this with the person or legal
representatives and to use this information to
improve the ISP. As a second example, a
manager can see the mean QOL scores for all
the clients of a location (in raw scores), and
what the average QOL score is of all the clients
of that location in relation to the other clients of
the same organization (in percentile scores).
These data are important to analyze and discuss
and thus can be used for quality improvement
such as discussing which additional
compe-tencies are needed for the staff of this
location. Third, one can see the average QOL
score of all the clients of an organization (in
raw scores). These data are also important to
analyze and discuss for developing quality
improvement strategies that focus on
organi-zational policy and change, additional
competences needed by the staff in general,
which courses need to be developed for clients
and staff, and the determination of the
significant predictors of personal outcomes.
Finally, these POS profiles are important to use
as key results in a quality management model,
such as in the EFQM Excellence model of the
European Foundation on Quality Management
(2011).
In summary, these three examples show
how various organiza-tions and systems
internationally are using EBOs to address
policy, managerial, and clinical issues. As a
component of evidence-based practices, these
uses are based on best evidence that is obtained
from credible sources that use reliable and valid
assessment methods based on a clearly
articulated and validated model (see Table 1)
and a measurement framework (see Table 2).
The
Table 4
Quality of life-related outcomes on the Personal
Outcomes Scale for persons with intellectual
disability and for persons without a disability
living in the same area in the Netherlands.
Domain Average
score and
standard
deviation
for persons
with an
intellectual
disability (n
= 186)
Average score
and standard
deviation for
persons
without a
disability (n =
291)
Material well-being
Emotional well-being
Physical well-being
Interpersonal relations
Personal development
Self-determination
12.4(2.6)
13.2(2.6)
12.7(2.6)
9.1(2.1)
13.1(2.1)
14.9(2.2)
16.4(1.6)*
16.9(1.2)*
16.6(1.6)*
14.1(2.3)*
17.1(1.2)*
16.4(1.8)*

253

Rights
Social inclusion
14.5(2.0)
14.1(1.7)
15.7(2.1)*
14.7(2.2)
* p < 0.001..
development and use of EBOs has significantly
impacted the field of intellectual disability in
numerous ways in addition to providing reliable
and valid information for the three uses just
discussed.
One of the main impacts of EBOs has been
to change our thinking regarding the standard
for comparing the quality of life of persons with
intellectual disability, and to realize that the real
standard of comparison is the community, not
the person, the organization, or the system.
From that perspective, we have begun to
compare quality of life-related outcomes for
persons with intellectual disability with those of
persons without a disability who live in the
same community. The results of one such
comparative study conducted using the POS
with clients from the Arduin program and
adjacent communities in the Netherlands are
shown in Table 4 (Claes, personal
communication). The significant differences
reported in both Tables 3 and 4 between service
recipients and persons without a disability
indicate where system and organization policies
and practices should focus as we attempt to
approximate or reach the community norm.
With the development of evidence-based
outcomes, we are now in a better position to
address clinical, managerial, and policy
decisions related to reducing the discrepancies
shown in Tables 3 and 4. To do so, however,
requires a concerted effort by organizations and
systems to align their input, throughput, and
outcome/output components at the individual,
organization, and system level (Schalock &
Verdugo, 2012a, 2012b) and to implement those
guidelines discussed in the following section.

4. Guidelines for developing and using
evidence-based outcomes
Based on the authors’ experiences across
those international jurisdictions described
above and the work of Bonham et al. (2004),
Claes, Van Hove, Vandevelde, van Loon, and
Schalock (2010), Schalock et al. (2008) and
Schalock and Verdugo (2012a, 2012b), we
suggest the 10 guidelines regarding the
development and use of EBOs summarized in
Table 5.
These guidelines are responsive to the
concerns expressed by some (e.g. Glasrud, 2001)
regarding the adoption of private sector
techniques and outcome based evaluations in
public and non-profit organizations.
It is emphasized that the data collection
procedure(s) should always be at the individual
level, enabling the individual to respond for
him or herself whenever possible. However, as
demonstrated by the three examples, there are
multiple uses of this personal outcome
information: at the individual level to enhance
in an evidence-based manner clinical decisions
(e.g. improve Individualized Supports Plans), at
the organization level for continuous quality
improvement (use in strategic planning
processes, operational planning and
implementation, in a cycle of
Table 5
Guidelines for developing and using
evidence-based outcomes.
1. Evidence-based outcomes must be
measured at the individual level, enabling
the individual to respond for him or
herself whenever possible. Data may be
used for individual, organization and
system level analysis, but the use and
reporting of data should be such as
ensures the anonymity of the individual,
unless explicit safeguards are in place to
protect the rights and welfare of
respondents.
2. Best practices are employed in developing
and standardizing the outcome
measurement instrument. These best
practices are: (a) the scale development
was based on a validated conceptual and

254

measurement framework; (b) the
measurement approach was theory based
and inductively developed; (c) items (or
domain indicators) were constructed in a
methodological sound way and included
multiple stakeholder focus groups; (d)
data analysis and feedback guided the
developmental process.
3. The assessment instrument on which the
evidence-based outcomes are based has
robustness as reflected in acceptable
reliability and validity.
4. The assessment instrument on which the
evidence-based outcomes are based: has
demonstrated utility in that they can be
used for multiple purposes, and is relevant
to evaluating a program’s or
organization’s effectiveness in terms of
personal outcomes and efficiency in terms
of organization outputs.
5. The etic (universal) and emic (culturally
based) properties of the scale need to be
demonstrated.
6. The evidence-based outcomes are
obtained from an assessment instrument
that is administered by trained surveyors,
including persons with intellectual
disability.
7. The assessment and use of evidence-based
outcomes is part of an organizations
self-assessment and continuous quality
improvement process.
8. The organization using evidence-based
outcomes is open to change and can be
characterized as a learning organization.
9. Evidence based outcomes should be
reported at the individual level or
aggregated at the organization or systems
level.
10. The use of evidence-based outcomes
should not be a single point in time, but
provide a benchmark for strategic
planning and on-going quality
improvement.
continuous quality improvement), and at the
systems level the use for policy decisions (e.g.
to establish system goals as required by the
state budget process, and then use survey
results to measure the achievement of those
goals).
They reflect that using a well-developed,
robust, and valid instrument that is adapted to
the context of specific organizations is one of
the most effective factors in the successful
implementation of management systems in
organizations.
5. Challenges involved in the use of
evidence-based outcomes
Organizations and systems can use
evidence-based outcomes to enhance their
effectiveness and efficiency. However, there are
a number of challenges that need to be
overcome for such to occur. First, policy
makers as well as managers of organizations
should be aware that there are costs involved.
Evidence-based outcomes are the result of
interviews conducted at the individual level. In
the case of Ask Me! SurveySM, the My Life:
Personal Outcomes IndexTM an agency is hired
to do this work, in the case of the Personal
Outcomes Scale in Arduin a full-time
professional was hired to do the interviews.
Second, there is the need to change mental
models and mindsets of stakeholders. Often
policymakers and managers think primarily
about inputs and processes focusing on quality
of care, whereas EBOs focus on outcomes. As
seen in the example of Arduin this can require a
huge shift in services to a more individualized
approach within a quality of life framework.
Analogously, organizations need to learn how
to integrate and align the outcomes into the
input and throughput components of their
service delivery system.
Third, there is the need to overcome
administrative and regulatory apprehension
regarding ‘managing for results’. Management
research has demonstrated that frequently, very
sophisticated instruments with good intentions

255

are not implemented in the organization
because of the complexity of the process, a lack
of enthusiasm, and the absence of knowledge in
the organization regarding specific
implementation strategies. As a result, many
organizations are measuring performances but
fail to use evidence-based outcomes in order to
support strategic planning and financial
management (Bouckaert & Van Dooren, 2003).
Finally, it is important to emphasize that
an organization and its employees have to
acquire knowledge in order to work with
evidence-based outcome instruments and the
resulting data. The provision of staff training is
a positive determinant of the effective
implementation of evidence-based outcomes in
organizations. Moreover, it is essential for
organizations that are serious about using
evidence-based outcomes to develop a
management information system that allows for
electronic data collection, analysis, and
reporting.
Acknowledgements
The following persons are part of a larger
international consensus group that had input
into the formulation and final editing of the
current manuscript. They are also involved in
developing subsequent articles in this series
regarding interpretation guidelines and
application of evidence-based practices at the
individual and organizational level.
Eric Broekaert, Ph.D. is a full professor at
the Department of Orthopedagogics (Special
Education), Ghent University (Belgium). He
has authored and co-authored numerous articles,
books, and book chapters on substance abuse
treatment, therapeutic commu-nities, and
theoretical Orthopedagogics, e-mail address:
eric.broe-kaert@ugent.be.
Wil H.E. Buntinx, Ph.D. is director of
Buntinx Training and Consultancy and
Research Assistant Professor, Govenor Kremers
Center, Maastricht University (Netherlands). He
has published widely in the field of disability
policy and organizational management and
change, e-mail address:
whebuntinx@maastricht.edu.nl.
Laura E. Gomez, Ph.D. is a doctor of
psychology at the University of Oviedo,
Assistant Professor at the University of Oviedo,
and researcher on disabilities at the Institute on
Community Integra-tion (INICO) at the
University of Salamanca. She has several
international publications in the areas of
evidence-based practices, quality of life, social
services, and intellectual disabilities, e-mail
address: laura.elisabet@gmail.com.
Geert van Hove, Ph.D. is a professor
senior lecturer at the Department of
Orthopedagogics (Special Education), Gent
Univer-sity (Belgium). He has authored and
co-authored numerous publications in the field
of intellectual disability. His research interests
are inclusive education, quality of life, and
self-advocacy, e-mail address:
geert.vanhove@ugent.be.
Stijn Vandevelde, Ph.D. is a lecturer and
researcher at the Faculty of Social Work and
Welfare Studies at University College Ghent
and a visiting professor at the Department of
Orthopeda-gogics, Gent University (Belgium).
His research interests in include theoretical
orthopedagogics, quality of life, and treatment
for special target groups including offenders
who are mentally ill and substance abuse in
persons with intellectual disability, e-mail
address: Stijn.vandevelde@ugent.be.
Miguel Angel Verdugo, Ph.D. is Director
of the INICO Research Center on Community
Integration and Professor of Psychology at the
University of Salamanca (Spain). He has
published widely in the areas of quality of life,
individualized supports, and public policy,
e-mail address: verdugo@usal.es.
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personal outcomes: Organizational strategies,
guidelines, and exam-ples. Journal of Policy
and Practice in Intellectual Disabilities, 5(4),
276–285.
Schalock, R. L., Verdugo, M. A., & Gomez, E.
(2011). Evidence-based practices in the field of
Intellectual and developmental disabilities: An
international consensus ap-proach. Evaluation
and Program Planning, 34, 273–282.
Schalock, R. L., Verdugo, M. A., Jenaro, C., Wang,
M., Wehmeyer, M., Xu, J., et al. (2005).
Cross-cultural study of quality of life
indicators. American Journal on Mental
Retardation, 110, 298–311.
Thompson, J. R., Bryant, B. R., Campbell, E. M.,
Craig, E. M., Hughes, C. M., Rotholz, D. A., et
al. (2004). Supports Intensity Scale.
Washington: American Association on Mental
Retardation. J.H.M. van Loon et al. /
Evaluation and Program Planning 36 (2013)
80–8786
van Loon, J. H. M., Claes, C., Van Hove, G., &
Schalock, R. L. (2010). De ontwikkeling van
de Persoonsgerichte
Ondersteuningsuitkomsten Schaal (POS).
Nederlands Tijds-chrift voor de Zorg aan
mensen met verstandelijke beperkingen, 36(3),
180–196.
van Loon, J. H. M., & Van Hove, G. (2001).
Emancipation and self-determination of people
with learning disabilities and down-sizing
institutional care. Disability & Society, 16(2),
233–254.
Van Loon, J., van Hove, G., Schalock, R. L., &
Claes, C. (2008). Personal Outcomes Scale: A
Scale to Assess an Individual’s Quality of Life.
Middelburg, The Netherlands: Stichting
Arduin and Gent, Belgium: University of
Gent.
van Loon, J. H. M., Van Hove, G., & Schalock, R. L.
(2009). The use of SIS data/items for the
development of an individual supports plan. In
R. L. Schalock & J. Thompson (Eds.), The SIS
implementation guide. Washington, DC:
American Association on Intellec-tual and
Developmental Disabilities.
van Loon, J. H. M., Van Hove, G., Schalock, R. L.,
& Claes, C. (2010). Personal Outcomes Scale:

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A scale to assess an individual’s quality of life.
Stichting Arduin, Netherlands: Universiteit
Gent. Retrieved from the World Wide Web
http://www.poswebsite.
org/docs/POS-Admin_-Stand__Manual.pdf.
Verdugo, M. A., Schalock, R. L., Keith, K. D., &
Stancliffe, R. J. (2005). Quality of life and its
measurement: Important principles and
guidelines. Journal of Intellectual Disability
Research, 49(10), 707–717.
Vreeke, G. J., Janssen, C. G. C., Resnick, S., &
Stolk, J. (1998). Kwaliteit van bestaan van
mensen met een verstandelijke handicap.
Ontwikkeling van een meetinstrument voor
woonvoorzieningen en de stand van zaken in
Nederlandse instellingen. Amsterdam: Vrije
Universiteit.
Wang, M., Schalock, R. L., Verdugo, M. A., &
Jenaro, C. (2010). Examining the factor
structure and hierarchical nature of the quality
of life construct. American Journal on
Intellectual and Developmental Disabilities,
115(3), 218–233.
Jos H.M. van Loon, Ph.D. works in Arduin, a
service provider in the Netherlands, where he
contributed both as a psychologist/manager and
as a researcher in the process of
deinstitutionalization of the former institution
Vijvervreugd, in reforming it into a community
based organization. He is connected as a
visiting professor to the depart-ment of Special
Education of the University of Ghent in
Belgium where Quality of Life, inclusion,
self-determination and supports are among the
themes he works on. He developed together
with Prof. Geert Van Hove, Prof. Robert
Schalock and dr. Claudia Claes a measurement
tool for QOL: the Personal Outcomes Scale,
which was published in 2008.
Gordon S. Bonham, Ph.D. is President of
Bonham Research (Mars, PA, USA). He has
been the researcher for the Maryland AskMe!
Project since its beginning in 1997. A
sociologist, he also conducted survey and
applied social research and program evalua-tion
at the National Center for Health Statistics, the
University of Louisville, and Towson
University. He currently conducts research and
publishes in the areas of
intellectual/development disabilities and after
school programs.
Dale D. Peterson, M.A., M.Div. is the chief
operating officer (Disability Service) with
Catholic Social Services (CSS) based in
Edmonton, Alberta, Canada. Catholic Social
Services delivers residential, outreach, and
vocation support services to over 1000 children,
youth and adults who are developmentally
disabled, dual diagnosed, men-tally ill,
physically disabled, or have an acquired brain
injury in central and northeast Alberta. CSS was
one of the first agencies in Alberta to develop a
performance measurement framework based on
personal outcomes and was also one of the first
service providers in the Edmonton Region to
pilot the My Life personal outcomes survey.
Robert L. Schalock, Ph.D. is professor
emeritus at Hastings College (Nebraska) and
Adjunct Research Professor at the Universities
of Kansas (Beach Center on Disabilities),
Salamanca, Gent, and Chongqing (Mainland
China). His national and international work has
focused on the conceptualization and
measurement of quality of life and the supports
paradigm. He has been involved in the
development and evaluation of community
based programs for persons with intellectual
and closely related develop-mental disabilities.
Claudia Claes, Ph.D. is a lecturer at the
Faculty of Social Work and Welfare Studies of
University College Gent and a researcher at the
Department of Orthopedagogics, Ghent
University (Belgium). Her research interests
include quality of life in the field of intellectual
disability, person-centered planning, and
individualized supports.

259

Adelien E.M. Decramer, Ph.D. is a lecturer
and researcher at the Faculty of Business
Administration and Public Administration,
University College, Ghent and the Faculty of
Economics and Business Administration, Ghent
University (Belgium). Her research interests
include general management and individual and
organization performance management in the
public, non-and social profit sector.

260

Reference 1
Kanji WATANABE (2011)
The keynote speech at the 8th Annual Convention of the Japanese Association of
Group Homes for People with Intellectual Disability
以個人為中心與社區生活支持
Person Centered Approach and Support for
Community Living
作者
Kanji WATANABE 渡邊勸持
(Reseach Fellow, the Institute for Community Living, Mimasaka University)
(美作大學地域生活科學研究所客員研究員)
Akiko Yakushiji 藥師寺明子
(Associate Professor, Mimasaka University)
(美作大學生活科學部社會福祉學科副教授)
翻譯：高靖翔國立台北大學研究生校譯：高雅郁智障者家長總會社工專員
前言
「第八屆日本智能障礙團體家屋協會年會」
於 2011 年 6 月 18 至 19 日於日本岡山縣舉辦，由
岡山縣智能障礙福祉協會與一個私立智能障礙
組織「桃太郎」（名字取自日本著名的寓言故事
主角）共同舉辦；「桃太郎」這個組織的獨特之
處是由智能障礙者與其支持者們共同來運作
的。自 1994 年以來，在岡山縣每年都會為工作於
團體家屋的照顧服務員辦理工作坊，並從 1998
年起也同步以智能障礙者為對象舉辦工作坊。
於 2011 年將這兩個工作坊合併以會議形式
舉辦。參與會議的 280 位智能障礙者，其中有 250
人居住在岡山縣；而出席會議的 340 位支持者
中，也有 97 位是居住在岡山縣。該會議方案為
團體家屋的住民們提供許多活動，包括觀光旅
遊、卡拉 OK、遊戲、及茶會，並就他們在團體
家屋的生活，透過會議討論交流意見。在支持者
的會議中，有來自日本 311 東部大地震受災區岩
手縣支持中心的成員報告了團體家屋在地震當
時的情況。在各種專題研討之後，支持中心的主
任們也進行幾場演講。出席專題研討會的對象包
括社區生活的支持者(主要服務於含岡山縣在內
的四個縣市的團體家屋)、智能障礙者、推動者和
專業人員。
某位出席會議的智能障礙者提出，在災難的
情況下應該優先支持最弱勢者的論點，令與會者
印象相當深刻。
以下是筆者專題演講的要點。

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1. 個人中心取向(Person centered approach)
在西方社會普遍以個人中心取向作為支
持智能障礙者的基本方針。在 1930 年代，幾
乎所有發展中國家認為應該將智能障礙者隔
離在大型教養院中，此歷史事實與以個人中
心取向為針對智能障礙者的服務方針的重要
性有著強烈的關係。
各個國家的大型教養院的生活條件有所
不同，尤其以美國的規模和隔離都更加突
出，住民遭受到更多不幸的生活狀況。圖一
所示的關於智能障礙攝影作品，「煉獄中的聖
誕節」是著名的情況報導
(1)
。目前網路上的各
種照片和影片也都呈現出此時期的情況
(2)
。
圖一“Christmas in Purgatory” (1966)
圖二 at Aichi Prefectural Colony (1974)
大型教養院中的隔離治療是普遍的做法，由
於需要管理的人數眾多，在教養院中管理為優
先，障礙者的需要與希望則不在制式的生活規劃
當中。
雖然日本教養院的規模和隔離程度較少，但
是，在日本的教養院中依然有隔離治療。
由於 1950 年代到 1960 年代去機構化運動逐
漸逢勃發展，興起許多社區居住與生活的改革和
運動。
戰爭結束之後，丹麥任命 Bank-Mikkelsen 學
者為福利部障礙科科長，對他而言這是一個全新
的領域，在參觀與觀察障礙者的日常生活後，他
有一個簡單的提問：「為什麼智能礙障者會住在
這樣的教養院?」，他試圖從專業人員中解惑、卻
徒勞無功，他認為這些人應該就像我們一樣過正
常的生活，於是提出了正常化(normalization)的想
法。
在英國，「一般生活」的原則是受到美國獨
立生活運動的影響，而如由自己做選擇與決定之
個人中心取向也隨之開始實行。該原則仍然是政
策於制定障礙者支持系統規劃時的基本概念。
在已發展國家，去機構化運動積極致力於將
院生從教養院移轉至社區的團體家屋或私人住
宅，並且有些國家是完全廢除教養院。雖然日本
政府和支持團體鼓勵社區居住與生活，但是居住
在教養院的人數仍然超過了住在團體家屋的人
數。
2. 支持者的自覺 (Awareness of the
supporters)
為了推動個人中心取向，在制度和政策
決策下確保團體家屋或私人住宅是重要的，
但同時於實際的支持情況中，支持者也被期
待應該意識到個人中心取向在支持實況與制
定支持計畫時的重要性。
他們應該如何啟發這個敏感度？池田太
郎的想法和生活充滿了暗示。
池田太郎在 1955 年為智能障礙者創辦了
一間機構，當時尚未有任何成人智能障礙機
構成立，幾年之後，他開辦了一間名為「民
間下宿」的團體家屋。
池田先生提出了從機構搬到團體家屋的

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兩位人士所寫的日記：
「我在 3 月 28 日來到 Kooyama 之家，
以通勤方式在三重火車運輸公司上班，我喜
歡我的家，我想好好照顧我的房間，在我的
房間內我睡得非常好。」
另一個人寫到：「自從我搬到 Kooyama
之家這一個月以來，我的房間很安靜，而且
我很喜歡。我們四個人相處得很好，Y 先生、
N 先生和 M 先生都是我的朋友。」(※在翻
譯智能障礙者的用詞時，也要翻譯那個口吻)
池田先生在閱讀這些日記之後，給了如
下的註解：
「由天真的句子中表達了入住團體家屋
的喜悅，尤其是對於房間的安靜與良好睡眠
的回饋讓我感動。一想到在我們機構內還有
60 位院生共同生活就很讓我心碎。我們都知
道，寧靜和良好的睡眠是人類生活所必需，
但在機構中我們不能不忽視這方面的需求。
機構並不是人們正常生活樣態的真正住
所。」。
池田先生試圖以智能障礙者不流暢的語
言去了解他們的感受，以回應到他的工作。
當智能障礙的狀況更為嚴重時，非語言的溝
通會勝於語言的溝通，因此，個人中心取向
要求支持者具備高度敏感能力，去密切觀察
他/她的日常生活以傾聽他/她的需要。
3. 個人中心取向所需的人力資源 (Human
Resources required for person centered
approach)
我們如何藉由非語言的溝通勝於口語的
溝通來得知一個人的需求？
據池田先生表示，敏感度或傾聽他人的
能力是必須的。首先，我們必須隨時留意他/
她，並花一些時間在其身上，這是需要時間
的。
即使對方能以口語溝通，你也不能完全
只依賴口語溝通，而同時也應該花一些時間
在非語言的溝
通上。
在聖 ‧ 修
伯里(Saint-Exup
éry)所寫的《小
王子》一書中，小王子問狐狸：「我要怎麼成
為你的朋友？」，狐狸回答：「你必須很有耐
心。首先，你可以坐在草地上、但得離我遠
一點，我可能用餘光看你，但你不能跟我說
話，語言是誤會的泉源，但是，每一天你都
可以坐得離我更近一點。」。狐狸以成為朋友
所需的時間，就像彼此坐著的距離來引導小
王子。
支持者應該持續留意智能障礙者、並花
時間陪伴他們，照顧服務員(教保員)和社會工
作者在團體家屋中對智能障礙者的支持扮演
重要的角色。
在他們周遭的人有可能願意靠近與花時
間，並試圖給予支持嗎?
(1) 照顧服務員(教保員)
有幾位住在團體家屋的住民透過刊
物或雜誌表達了他們的意見，這些意見
是機構所關心的。他們提出與照顧服務
員(教保員)建立信任關係是需要時間
的，而且他們不希望照顧服務員(教保員)
的離職流動率太快，同樣的意見一再出
現於其他刊物中。
影響照顧服務員(教保員)留在其工
作崗位上的工作條件仍有很大的改善空
間，尤其是薪資待遇。
在瑞典，照顧服務員是公務員，他

263

們的工作身分是受到保障的，因而他們
願意長期地留在他們的工作崗位上。在
美國，照顧服務員的薪資非常地低，其
離職率高而導致種種問題。反觀日本，
照顧服務員的薪資也很低，且多數是兼
職人員身分，他們的工作狀態不穩定，
而所具備的能力也參差不齊，其中許多
人起初是無工作經驗和未接受過訓練
的。
自 1994 年以來，岡山縣智能障礙福
祉協會致力於對團體家屋的照顧服務員
進行培訓，在藥師寺老師
(3)
的報告中也討
論了有關照顧服務員的培訓內容。起
初，他們似乎未採用個人中心取向，不
過他們當中有些人提出他們所使用的支
持方式、並吸取他人的經驗以作為參考
原則。照顧服務員在實務工作中的支持
敏感度和在職訓練的重要性應該被檢驗
與制度化。
(2) 社會工作者
當智能障礙者期望搬進社區的團
體家屋時，通常沒有足夠的體制或環境
因應，必須有人界於智能障礙者與社區
之間，以協助彼此了解並滿足各自的需
求，必須有人進入社區、與社區的人一
同工作。
一般來說，社會工作人員理應是這
樣的角色，那在日本執行的如何呢?
去年(2010 年)筆者參加一場由日本
智能障礙協會(Japanese Association on
Intellectual Disability ，JAID)主持的服
務分配輸送跨國比較研究，研究中比較
了 5 個國家，當中瑞典、英國和澳大利
亞的推行令人印象非常深刻，這些國家
的社會工作人員長期與智能障礙者接
觸、互動，並不斷嘗試去創建新的體
制，藉由傾聽他/她的聲音及和社區人
們的對話，以實現他們的需求和夢想。
根據此制度所做的決策乃是主要透過
社會工作人員與智能障礙者之間的會
談所定，而客觀指標顯示，與障礙程度
的關連性意義並不大。在日本，是由市
町村役所(相當於台灣的鄉鎮市公所)
的職員去聽取智能障礙者的需求，透過
問卷調查作為需求文書資料作成的基
礎；接著，該文件進入委員會審查之
際，並未邀請智能障礙者出席，而直接
由市町村裁定。在這過程中，卻未能見
到同時被智能障礙者及社區內人們所
信任、且可藉此促進社區轉變的專業人
員的角色。
當社會工作人力尚不足時，擔任此
職務的人稱為協調者(coordinators)。他
們在這個領域裡有經驗，一部分的人員
會負責一定人數的智能障礙者、以協助
智能障礙者；他們非常積極推動正常化
原則，且密切留意與聽取智能障礙者的
需求。即使這樣的制度因財務問題而中
斷，他們依然積極推動；在他們的首頁
中，有提到他們的照顧討論。
「為了處理智能障礙的問題，有關
人士共同在會議中會面，我們討論該問
題、並試著找尋能夠支持智能障礙者的
方法，根據不同的個案狀況而組成不同
成員的討論會，有時支持者可能就是隔
壁的魚販。很多時候當需求無法獲得滿
足時，我們會持續開會討論，找出在社
區中存在的根本原因。我們試著盡量以

264

智能障礙者的聲音為主，並試圖改變社
區以促使他/她的聲音被聽見。」
4. 個人中心取向的基本價值(Sense of value
in the back ground of person centered
approach)
英國衛生部健康署在 2004 年頒布智能障
礙白皮書，白皮書的標題是「重視人的價
值」，且在網站上以各種插圖為智能障礙者作
介紹。圖 3 名為「我的生活」，用來向智能障
礙者解釋以個人為中心的取向。

Fig.3 It is my life
障礙者與社會上其他大多數人有著不同
的的心理與生理功能，而社會環境和風俗習
慣是以一般多數人的需求而設，卻不一定適
用於障礙者。
2006 年，一位視障者於日本智能障礙者
團體家屋協會的刊物中寫道：
「如果這個社會上多數的人口是視障者
的話，我若當選市長，在友善環境的考量下，
我將拆除所有街道上的路燈。」
我們可能會對於需要依賴非口語溝通者
感到不耐煩，有些重度智能障礙者甚至不知
道人家在叫他/她的名字而未有所回應，他們
可能無法自己進食，可以無法在社會上工作。
我們真的覺得這些人如同我們一般具有
價值性，且尊重他們的存在嗎?這樣的問題對
與智能障礙同住的家庭成員是毫無意義的，
因為在日常生活中家人接受智能障礙者如同
他/她的存在，而這個問題根本從未發生。
一位有個無法行動與說話的障礙孩子的
母親於演講中提到：「在我們家，我們有幸能
擁有許多人想要、但卻無法擁有的珍貴寶
石。」；一位大學生這麼寫道：「我學會理解
智能障礙者如同理解他人一般，在我們家，
因父母經營的團體，所以我的成長中有他們
相伴，從日常的接觸讓我打從心底接受他們
與我並無不同。」。
大多數人從未與重度障礙者相處，會感
到負擔與困難重重，甚至質疑他們存在的價
值。
我還活著
我能聽見你的聲音，如同小鳥唱歌般的聲音
你的心就像空氣中清香的微風感染了我
你手指的輕觸，呢喃地告訴我，你與我同在
陽光透過樹葉灑在我身上
我感受到大自然中清新空氣的祝福
沒錯，我還活著
這是筆者多年以來與某位重度智能障礙
男孩互動的感觸。沒有語言的世界與語言世
界是截然不同的，它豐富了大自然的祝福，
讓視覺與觸覺變得更具意義性。如果你試圖
進入他們的世界，請花點時間成為他們的朋
友，你將體驗到另一個世界的廣度，也豐富
了你的視野。

265

Reference 1
The keynote speech at the 8th Annual Convention of the Japanese
Association of Group Homes for People with Intellectual Disability
Person Centered Approach and Support
for Community Living
Kanji WATANABE
(Reseach Fellow, the Institute for Community Living, Mimasaka University)
Akiko Yakushiji
(Associate Professor, Mimasaka University)
Introduction:

“The 8th Annual Convention of the Japanese
Association of Group Homes for People with
Intellectual Disability” was held in Okayama
under the auspices of Okayama Prefectural
Association for the Welfare of People with
Intellectual Disability and a private network for
those people: Momotaro (the name of the
famous boy appeared in the fable), on the 18th

and 19th
of June in 2011. This association is
unique in the sense that it is for the people
with intellectually disabled and supporters,
and operated by themselves.
In Okayama Prefecture, workshop for
carewokers of group homes have been held
annually since 1994, and from 1998 programs
were held also for the people with intellectual
disability in parallel.
This year the both workshops were combined
with the convention. Many people with
intellectual disability, 250 out of 280 people in
Okayama, attended the convention. 97 out of
340 supporters also attended the convention.
The program for the people who live in group
homes included various activities like
sightseeing tours, KARAOKE, games, tea parties
and there was also a discussion session for
exchanging opinions about their life in group
homes. In the program for supporters, people
from Iwate Prefectural regional support center
reported the situation of the group homes at
the time of the Great East Japan Earthquake.
Several lectures by the directors of support
centers were followed by the various
symposiums. Supporters of community living
mainly in group homes in four prefectures
including Okayama, people with intellectual
disability themselves, facilitators, and
professionals participated the symposiums.
One of the participants with intellectual
disability made quite an impression on the

266

audience during symposium on catastrophic
situation by standing up and requesting the
weakest should be the first one to be
supported.
The following is the gist of the keynote
speech addressed by the author.

１． Person centered approach
Person centered approach is recognized
widely as a western basic principle for
supporting people with intellectual disability.
People with intellectual disability were
committed to isolated large scale institutions in
almost all the developed countries in 1930s.
This historical fact bears strong relationship
with the importance of the principle of person
centered approach for those people.
Living conditions at large scale institutions
vary according to countries, but in America
where the scale and isolation were more
prominent, people suffered more from the
miserable living conditions. The photographic
Essay on Mental retardation, “Christmas in
Purgatory” is famous in reporting the situation
(Fig.1)1)
. At present the various pictures and
movies on internet also show those situations
in that period.2)

Fig.1 “Christmas in Purgatory” (1966)

In large scale institutions block treatment is
general practice. In order to manage great
number of people, administration of institution
comes first, and needs and hopes of the people
were not recognized in rigid living schedule.
Although the scale and isolation were less in
degree in Japan, there were block treatment
institutions in Japan.

Fig. 2 at Aichi Prefectural Colony (1974)

In 1950s and 1960s the movement of
deinstitutionalization became active, and many
principles and movements arose in relation
with community living.
In Denmark after the war, Bank‐Mikkelsen
was appointed to the director of disability
section of ministry of welfare. He was new in
the field, and after visiting and observing the
living situations of people with disability, he
had a simple question. “Why do people with
intellectual disability live in such institutions?”
He sought answers from professionals in vain.
He thought these people should lead normal
life just like we do, and he came up with the
idea of normalization.
In England, an easy principle of “ordinary life”
was born being influenced by the independent
living movement in America, and person
centered approach such as choosing and
deciding by oneself began to be practiced. The

267

principle is still the basic idea for policy making
in planning the support system for people with
disability.
In developed countries, movement to transfer
people in institutions to group homes or
private homes in the community became
active, and there are countries where
institutions are completely abolished. In Japan
in spite of government’s and support groups’
encouragement of community living, the
number of people who live in institutions still
exceeds the number of people who live in
group homes.

2. Awareness of the supporters
In order to move the person centered
approach forward, system and policy making in
securing group homes or private homes is
important. But at the same time in actual
supporting scenes, supporters are also
expected to be aware of the importance of
person centered approach in supporting and
making support plans.
How should they aspire to that sensibility?
Taro Ikeda’s idea and life is full of suggestion.
Taro Ikeda founded an institution for people
with intellectual disability in 1955 when
institution for adults with intellectual disability
was not yet established. A few years later he
started group homes under the name of
private lodging.
Ikeda introduces diaries of two persons who
moved from institution to group home.
”I came to Kooyama Home on the 28th
of
March, and started to commute by Mie Train
Transportation Company. I like my home. I
want to take good care of my room. I sleep so
well in my room.”
Another person wrote. ”It has been a month
since I moved to Kooyama Home. My room is
very quiet and I like it. Four of us get along very
well. Mr. Y Mr. N, and Mr. M. are my friends.”
Reading these diaries Ikeda commented,
“the joy of moving into a group home is
expressed well in naïve sentences. I was
especially moved by the comments on the
quietness of the room and sound sleep. It
breaks my heart to think of the 60 people still
living together in our institution. We all know
that quietness and sound sleep are important
in human life, and yet in institution we cannot
help ignoring those aspects. Institution is not
the house where people can lead normal life as
human being.”
Ikeda tries to understand the feeling of the
people with intellectual disability in their
awkward languages, and reflects on his work.
When intellectual disability is more profound,
nonverbal communication exceeds verbal
communication. Then person centered
approach requires the ability of supporters to
be more sensitive in listening to a person’s
needs closely observing his/her daily life.

3. Human Resources required for person
centered approach
How do we understand the needs of a person
whose nonverbal communication exceeds
verbal communication?
As Ikeda shows, sensibility or ability to
listening into other person is required. First of
all we have to stay close to the person and
spend some time with the person. It takes
time.
Even with a person who can communicate
verbally, you cannot totally depend on the

268

verbal communication but spend some time
with him/her without communicating verbally.
The prince in Petit Prince by Saint‐Exupéry
asks the fox,
“How can I be your friend?” The fox
answers. “You have to be very patient. First
of all you can sit on the grass a bit farther
down from
me. I might glance at you, but you
should
not talk to me. The language is the
cause of misunderstanding. But you can
sit closer and closer each day. ”

The fox teaches the prince just to sit close
by, and it takes time to be friend.
For people with intellectual disability who
depend on nonverbal communication, it is
only natural that it takes time if people try
to understand them.
Supporters should stay close to them, and
spend some time with them. Careworkers
and social workers play important roles in
supporting people with intellectual
disability in group homes.
Are they in the surroundings where they
can stay close to and spend some time with
the person they try to support?

(1) Careworker
Several people who live in group homes
express their opinions in the periodicals or
journals issued by the organizations concerned,
and they say it takes time to build trust
between themselves and carewokers, and they
don’t want their carewokers quit the job so
soon. The same kind of opinion is expressed
repeatedly in other publications.
Work conditions especially salary has a lot to
do with period of time they stay at their job.
In Sweden, carewokers are public employees.
Since their status is guaranteed, they could
stay at their job for a long time. In America
their salary is very low, and their retirement
rate is high causing various problems. Also in
Japan the salary of carewokers is low, and
many of them are part time workers. Their
status is unstable, and many of them start
working without experiences and training.
Okayama Prefectural Association for the
Welfare of People with Intellectual Disability
has started the training for the carewokers
who work at group homes since 1994. The
content of discussions by carewokers at the
training session was reported by Yakushiji 3)
. At
first they do not seem practicing person
centered approach, but some of them mention
reflecting their own support that they are
gradually learning to realize the principle by
listening to other people’s experience. The
importance of carewokers who are at the
actual supporting scenes and the job training
for them should be examined and
systematized.

(2) Social Worker
Usually there are not enough systems or
environment for people with intellectual

269

disability when they wish to move into group
homes in the community. Someone has to go
in‐between the person with intellectual
disability and people in the community so that
the needs of the person should be understood
and met. Someone has to get to work to the
people in the community to work together.
Generally social workers are supposed to take
this role. How does it work in Japan?
In the previous year the author participated in
a research by Japanese Association on
Intellectual Disability (JAID), internationally
comparing the process of allocating service.
Five countries were compared, and the
practice in Sweden, England and Australia was
very impressive. In those countries social
workers who have long contact with the
person with intellectual disability keep trying
to make new systems in order to actualize the
needs and dreams of the person by listening to
him/her and talking to the people in the
community. According to this system, the
decision is made centering around the talks
between the person and social worker, and
objective indicator showing the degree of
disability is not so meaningful.
In Japan the city, town, or village officials
listen to needs of the person with intellectual
disability, and make documents on the base of
the questionnaire. The documents are
examined at the committee without the
attendance of person with intellectual
disability. Then the decision is made by the city,
town or village. In this process the
professionals who are trusted by the person
with intellectual disability and also by the
people in the community, and who can change
the community for the betterment is nowhere
to find.
When social workers were still scarce there
were people who used to be called
coordinators. They were people who were
experienced in the field, and certain number of
them was appointed per number of people
with intellectual disability to help with them.
They were very active in promoting the
principle of normalization, and they stayed
close to the people listening to their needs.
They are still active even after the system has
been interrupted for the financial problem. In
their home page, they mention about their
care conference.
“In order to deal with the problem of a
person with intellectual disability, people
concerned are called and meet at the
conference. We discuss the problem and try to
find the way how we can support the person.
The assembled members vary according to
cases. Sometimes fish dealer next door can be
a supporter. Often times the need could not be
satisfied, and then we keep meeting at the
conference to find the cause which is deeply
rooted to the community. We try to put the
person with intellectual disability in the center
to listen to his/her voices, and try to change
the community so that his/her voices could be
heard.”

4. Sense of value in the back ground of person
centered approach
The Ministry of Health in England issued a
white paper on people with intellectual
disability in 20044)
. The white paper was
titled,” Valuing People”, and was introduced to
the people with intellectual disability on the
internet with various illustrations. Figure 3 is

270

titled “It is my life”, and the person centered
approach was explained for them.

Fig.3 It is my life

Person with disability has different
psychological and physical functions from
other majority of people in the society. Social
environment and customs are tailored to the
need of majority of people, and not suited to
the people with disability.
In 2006 a visually disabled person wrote in a
journal published by Japanese Association of
Group Homes for People with Intellectual
Disability.
“In the society where majority of people are
visually disabled, I would run for a mayor and
remove all the street lamps out of regard for
environment. “
We might feel impatient with the person who
depends on nonverbal communication. Some
people with severe intellectual disability do
not respond to their own names. They could
not eat by themselves, and are not able to
work in the society.
Could we really feel that these people are as
valuable as we are, and respect their existence?
This kind of question is meaningless to people
who live with a family member with
intellectual disability. Because in everyday life
they accept him/her as he/she is, and the
question does not even occur.
One mother whose child could not move and
without speech said, “In my house we are
blessed with precious jewel which many
people could not afford to have even if they
wanted to.” A college student wrote, “I learned
understanding people with intellectual
disability are just like understanding other
people. I grew up with those people in my
house which was a group run by my parents.
Through everyday contact I became to accept
those people as people who are not at all
different from myself.
Most of the people who never had any
contact with severely disabled person would
feel the burden and difficulties unbearable,
and raise question about the value of their
existence.

I am alive
I can hear your voice, and it sounds like a
song of a bird
Your heart communicates itself to me just
like breeze carries scent of air
Your fingers touch me whispering I am here
with you
Sunlight plays through tree leaves, and
reaches me
I feel the blessing of the nature in fresh air
Yes, I am alivezx

This is how the author felt when he was able
to communicate with a boy with severe
intellectual disability after many years. The
world without language is different from the
world with language, and it is bountiful with
the blessing of nature. The kinesthetic and skin

271

sensibility becomes more meaningful. If you
try to go into their world, take time to be their
friend, you would experience another world
which could enlarge and also enrich your
world.

References
1) Burton Blatt and Fred Kaplan (1966)
Christmas in Purgatory: A Photographic
Essay on Mental Retardation , Boston:
Allyn and Bacon, Inc.
2) Willowbrook: the Last Great Disgrace –
preview,
http://www.youtube.com/watch?v=k_sYn8Dnl
H4
3) Akiko YAKUSHIJI and Kanji WATANABE
(2009) : Facilitating Factors and Interfering
Factors of “ the Person Centered
Support” –A Study of the Care Staff at
Group Home for Persons with Intellectual
Disabilities‐ Japanese Journal of Social
Services, October No.5 147‐157
4) Department of Health, UK (2001) Valuing
people: a new strategy for learning
disability for the 21st century ‐ a White
Paper.

272

為什麼心智障礙者無法居住在自己的家裡？
~日本的去機構化運動~
Why persons with intellectual disabilities cannot live his/her own home?
～ The Movement of Deinstitutionalization in Japan ～
作者：Kanji WATANABE 渡邊勸持
翻譯：高靖翔國立台北大學研究生校譯：鄒啟蓉台北市立大學副教授
這篇期刊收錄於日本心智障礙協會(為日本最大的服務提供單位聯合組織, JAID)發行的「支持」
(Support)期刊，並發表於 2003 年 5 月推動去機構化的專題與 2003 年 8 月第 16 屆亞洲智能障礙會議。
1. 去機構化的意義 (The meaning of
deinstitutionalization )
20 世紀初，在西方先進國家中以機構化
方式管理心智障礙者。
為什麼我們要把他們集中化管理呢?
所謂「上等(superior)」的人被認為是有
價值的，而「次等(inferior)」的人則是一文不
值。殘廢、聾啞的人因無法謀生被視為無用。
當時的遺傳學過度渲染與低智能者結婚生出
的小孩長大後會男盜女娼，進而引發人們深
層的恐懼。
人們因為擔心害怕而將心智障礙者隔離
至教養院來保障社會安全。大型和隔離為此
時期教養院的特色，他們試圖將最多數的人
送往最遠的教養院隔離。1950 年到 1960 年，
美國一間教養院的平均人數超過 1500 人。在
日本，如此龐大的人數遠遠超出我們的想
像，Bank-Mikkelsen(丹麥學者及福利部官員)
指出，有些教養院對障礙者就像對待「動物」
般。希特勒以優生學為藉口，將許多障礙者
送進毒氣室。
20 世紀初，這些驚慫的事件讓人懷疑人
性的善良。
只因他們是無能的人，所以引發我們潛
在的迫害動機?
20 世紀中業後，許多國家開始關切人權議
題，種族隔離引發公眾關注，進而提倡人權與賦
權，婦女和兒童的權利也得到認可。許多原本被
驅離至陰暗社會角落者，開始主張自己的權利。
聯合國也在 1971 年通過了心智障礙者人權宣言。
在這樣的歷史背景之下，正常化的理念被標舉
而成為流行。Bank-Mikkelsen 在訪視一些機構後
就自問，「為何障礙者必須留在教養院?」，他無法
認同這種作法，並認為我們應該為心智障礙者提
供協助，讓他們如一般人一樣，能在正常的環境
中生活。
教養院惡劣的生活條件受到人們的關
注，並質疑教養院不人道的對待方式。去機
構化的風潮迅速蔓延至北歐各國、美國、英
國及澳洲。障礙者回歸他們的社區，社區中
的人士開始認識與瞭解他們，學習共同生活
並接納他們為社區中的一份子。在教養院的

273

集體化生活下，個人的需求是很難被重視
的。若說「機構化」象徵非人性化的封閉生
活環境，「去機構化」就意謂著離開教養院，
因此應該就是符合人性需求的社區生活的同
義詞。20 世紀發生了各種改革運動後，心智
障礙者終於可以開始自己的生活。
2. 去機構化的過程 The Process for
deinstitutionalization
人們常說 Bank-Mikkelsen 是機構化概念
的生身父母， Bengt Nirje 則是養父母
(Ohkuma, Hand in Hand, 1999,6 p.26)。Nirje
博士應邀到德島縣參與日本心智障礙協會
（JAID）1998 年的年度會議。他在回來的路
上參觀了愛知縣，並出席一場小型的教養院
員工與心智障礙者的家長聚會。圖 1 是本文
作者給 Nirje 博士說明日本現況與西方其他
國家的比較圖。
首先，
圖 1 中清楚
顯示在日本
教養院人數
不斷增長，
而西方的四
個國家教養
院人數因去機構化而持續下降。
更且，在 1970 年，瑞典教養院的人數幾
乎是目前日本教養院人數的 2 倍。如果將其
轉換為日本人口，相當於有 20 萬人從教養
院轉換到團體家庭中生活。
包括父母、機構工作人員、專業人士等
各種人士，參與推動心智障礙者離開教養院
進入社區生活的運動。雖然家長團體試圖倡
導社區生活，一些家長寧願讓他們的孩子待
在教養院，因為他們認為那裡較安全且被保
護。教養院有些員工因重視人權和障礙者的
未來，進而支持社區生活，不過有些員工持
反對立場，因為他們害怕失去工作。有些人
當發現社區生活的現實面不盡完美時，會認
為心智障礙者是被迫回到社區，因為留在教
養院的花費成本較高。
離開教養院的障礙者都去哪裡了? 他們
很多人想擁有自己的家，例如團體家庭或是
私人公寓，他們並沒有回到父母家或是去其
他教養院。
3. 日本去機構化發展緩慢的原因 The reasons
for the slow development of
deinstitutionalization in Japan
第二次世界大戰結束後，日本對心智障
礙者的服務從建立住宿機構提供給兒童與成
人開始。在當時幾乎沒有任何心智障礙者的
服務，家長必須完全承擔照顧自己小孩的責
任。我從家長口中聽到，在他們外出購物時，
必須將孩子用繩子綁在柱子上，或廁所牆壁
因自我傷害的行為而染成黑紅色。
特教學校的數量逐漸增加，即使是重度
障礙兒童也開始能獲得學校教育。對於從學
校畢業的障礙者，日間照顧中心提供他們安
全的工作場所，而中途宿舍和住宿機構也開
辦像是短期居住計畫或團體家庭的服務，讓
障礙者能回歸社區生活。
日本政府在 1995 年宣布一項新的「障礙
者計畫」，以每 30 萬居民為一個區域，設立
1 個社區支持中心的作法，推動心智障礙者
社區生活支持方案。個案管理模式的在職訓
練(care management training program)也開始
出現，以推動回應個案需求為主的服務。教
養機構部分員工也參與了社區生活支持計
畫。

274

今年(2003 年)在日本開始了「支持的經
費補助方案(Money system for the support, in
Japanese, Shienhi Seido)」的計畫，此計畫從
以往政府－服務提供單位兩方的互動，轉變
為由障礙者和地方政府雙方為主，並再由服
務提供單位、縣府及國家政府等在背後提供
支持的運作模式。
圖 2 是 2002 年服務的情況。近三分之一
的成年心智障礙者（約 12 萬人）在教養院生
活，剩下三分之二（約 22 萬人）在社區生活。
在社區當中，約 2 萬人是在自己的家中或公
寓獨立生活，約 1 萬人在團體家屋。
另外大約有 19 萬人與他們的父母和手
足一起生活(Shibata, Support, 2002：23)。去
年(2002)，在機構生活的人只有不到 1％從機
構回到他們的社區。為什麼成長如此緩慢呢?
這是因為缺乏法律規定，政府也沒有長期推
動社區生活支持的具體藍圖，像是如何提供
生活與工作場所等。在住宿機構中的管理階
層和工作人員似乎也要負部分責任，雖然，
他們盡其可能地善用政府的經費以改善教養
院住民的生活，但是完全依賴政府決策與預
算雖相當方便，卻可能無法感同身受障礙者
的觀點，並蒙蔽了為障礙者提供支持的更廣
闊視野。
當筆者回顧自己在愛知縣漫長的職業生
涯(一個心智障礙者的聯合服務中心，包括住
宿機構、職訓中心、寄宿學校、醫療醫院和
研究中心)，我不得不承認這就是 Maruyama
教授在他的著作中所提到的「讓權利睡著的
人」 (Masao Maruyama, 1986
"Nihon-no-Shisou", Iwanami p.154)。
就 Maruyama 所述，權利不是靜態的裝
飾品，而是需要不斷努力爭取才能得到的。
如果一個人讓權利休眠，此人將會付上代價
並可能驚訝地發現，世界一夜之間如同希特
勒統治一般。
圖 1 中，日本在機構生活的人數直線增
長，象徵著原本應該為障礙者發聲的人的輕
忽。他們持續讓權利睡著，並忘了從人性的
角度去質疑，障礙者應得的權利及心中的期
待是什麼。
4. 使心智障礙者從機構搬至社區的策略
(Measures for enabling people with
intellectual disability to move out of
institution to community)
(1) 提供住家與工作的保障(To ensure homes and
work)
在社區中，一個人自然地需要居住地點
與工作以維持生活，但目前，只有 3 萬人住
在在公寓或團體家庭。約有 19 萬人是需要
社區居所的，大約有 8 萬人沒有工作或欠缺
活動場所，且失業率達 36％。目前有更多人
想回到社區，為其找到住所是非常困難的。
有些人提出積極的建議於期刊中(比如
Support 期刊)，像是「每年為 1 萬人設立團
體家庭」(Fukuoka, Support 2002：20)或是「每
年設立 1000 個團體家庭」(Yamaguchi, Hand
in Hand 2002：30)。許多心智障礙者和他們
的朋友在團體家庭開始新生活，像是在北海
道的 Date 城鎮(北部島嶼)，他們運作相當成
功且有良好果效。雖然速度相當緩慢，但改
革正穩步推進。

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有些人認為，改變經費分配能刺激設立
更多團體家庭而非大型教養院 (Ogihara,
Hand in Hand, 2002：16)。現在的體制是，
一個人在社區居住的花費是在教養院的四
分之一開銷，其他的四分之三跑去哪裡?
在英國，維持機構的費用全部轉變為去
機構化的經費。要強化社區服務並為重度障
礙者提供離開機構後的後續支持是需要妥
善規劃的。某個大型機構甚至向位於其機構
內的銀行借貸。
在日本，政府刪減了對教養院四分之三
的開支，因為原本在教養院與其他三人同住
一室的障礙者，變成自己一人居住了。這些
人的人權明顯被忽略，要成功去機構化需要
全面且長遠的措施。
讓人們從機構回歸社區生活固然需要國
家政策規劃，但是機構的工作人員卻是實際
構思並執行回歸社區生活的關鍵人物，因為
他們最瞭解居住在機構中的障礙者。日本心
智障礙協會（JAID）可以在年度調查中增加
對每一位障礙者所需服務內容和程度的項
目，以便依據調查結果作具體規畫。由於教
養院員工和障礙者的支持者有密切互動，因
此在推動去機構化上應該扮演領導角色。
(2) 「支持的經費補助方案」的起步(“Monetary
System for the Support" just started)
「支持的經費補助方案」的用意是期待
能傾聽並回應服務對象個人的聲音。當向
障礙者詢問：「你如何申請入住團體家庭?」
他們有時會回答：「因為我很健康，所以不
用申請。」或是「對我來說有困難，因為
住進團體家庭須要使用自己的津貼補助或
年金。」。「支持的經費補助方案」開辦時
的理念可能超前於很多障礙者，但至少像
團體家庭或家務助理這樣的詞彙開始被使
用及被聽見，進而引起全國人民的重視。
「支持」與幫助或援助之間的區別，在
於「支持」包括服務對象個人生活方式的
未來規劃，其中包括考慮團體家庭的必要
性，而幫助或援助主要關注的是當下的需
要。重要的是，一般的社區居民應有管道，
透過市政府的行政運作，聽見並瞭解障礙
者的聲音。
希望在不久的將來，為心智障礙者的市
政規劃能反映由服務提供者、公部門服
務、民間團體與服務管理員等合作推動的
個人計畫，並讓服務管理員擔任個別障礙
者的倡導人。
「支持的經費補助方案」乃是一艘要遠
航船隻的起帆。
(3) 不要機構生活，而是社區生活(Not that way,
but this way)
之前有部由障礙者領域工作人員製作的
電影名為「Not that way, but this way」，「That
way」意即教養院制式化生活，而「this way」
則是所謂的社區居住與生活。
在「支持」(Support)、「手拉手（Hand in
Hand, 日本融合協會發行的月刊）」和「正常
化」(Normalization,日本障礙者復健協會
Japanese Society for Rehabilitation of Persons
with Disabilities, JSRPD 發行的月刊）等刊物
上，可看到許多社區居住與生活的文章刊
載。似乎日本心智障礙協會（JAID），這個
主要支持心智障礙者的團體這艘大船也已轉
向，朝「this way」逐步轉變。這艘船前進的
方向，會讓這社會對心智障礙者的支持，和
對社會一般人一樣，往同樣的方向前進。
日本詩人三吉(Toge Sankichi)曾寫了與原子

276

彈爆炸有關的詩：
帶我們的父親回來吧！
帶我們的母親回來吧！
帶我們的祖父母回來吧！
帶我們的孩子回來吧！
帶我回來吧！
帶回所有死亡消失的人
只要有人存在，
請帶回和平，讓和平不間斷。
這首詩可以改寫為：
讓心智障礙者由機構回到社區生活，以拾回
自己的人生。我將恢復我失去的人性
(humanity)，而所有與我有關的人的人性也將
一併恢復。
討論 Discussion
1. 日本居住服務的特色 Characteristics of
Residential Service in Japan
在日本，心智障礙者機構化始於 1960
年，然而，目前仍然有三分之一的成年心智障
礙者生活在機構中，如前所述，各教養院的規
模與行政管理有很大差異，但大多數住民的生
活品質比一般人低很多。
雖然日本政府的目標是去機構化，不過
由於各種原因，進度是緩慢的。
日本的住宿機構有以下特徵：
(1) 日本住宿機構起步較晚，是在第二
次世界大戰之後，因此，並沒有一
些西方國家經歷的悲慘歷史。
(2) 日本住宿機構是屬於中或小型規
模。
(3) 他們未必地處偏郊，而是位於社區
附近。
(4) 工作人員的教育水平較高，也能調
整工作心態並接納社區化運動
由於社區中缺乏資源，再加上住宿機構有
上述特性，因此日本政府不會像部分西方國
家完全廢止住宿性機構，而是運用已有的住
宿機構來發展社區照顧。由住宿機構發展的
團體家庭和短期住宿式的喘息服務已通過政
府補助，社區支持中心(community support
centes)也由住宿機構承辦。日本最大的服務
提供組織－日本心智障礙協會(JAID)，其認
可住宿機構與社區照顧這兩種模式。雖然地
方政府引進「支持的經費補助方案」以推動
社區化服務，但由於缺乏個案管理者、社區
居住場所和工作機會等因素，很難立即實現
社區化服務的理念。
2. 居住服務的形形色色 (Various style of
residential services)
各種居住服務就像一條連續線的兩端，住
宿機構在線的一端，而社區支持中心則是另一
端。
住宿機構(Residential institution):
通常，住宿機構有一定的收容人數比例，且
所有的日常活動，如工作和休閒都由機構負責。
從正面來看，機構制式化服務較方便管理且能確
保身心安全，就負面來說，則是缺乏自主權。
當選擇和決策的機會有限時，住民無法學會
建構自己的生活，並將依賴成性。他們和社區過
於疏離以致不知如何滿足自己的需求，而社區中
的人們也缺乏了解障礙者的機會。
社區支持中心(Community Support Center):
許多西方國家都有社區支持中心方案，例
如：美國加州的區域中心或是英國地方政府的社
區中心。社區支持中心最初設計的目的，是為心
智障礙者能行使其作為社區一份子的基本權利。
其主要功能是要掌握該區域障礙者的需求，並規
劃和提供服務。一般來說，社區支持中心不直接

277

涉及住所、工作或休閒活動等服務。
在西方國家，直接服務也越來越少納入社區
支持中心的功能，不過，一些發展中國家其社區
中如果沒有機構或日間照顧中心，社區支持中心
可提供這兩類服務。各個國家在自己的文化脈絡
中做各種嘗試與實驗，以推動非隔離的居住服
務。這些國家應該有更多討論、相互分享與學習
的機會。
詞彙表 Glossary
1. Hand in Hand: monthly periodicals published
by Japan Inclusion. This organization started as
the parent association of persons with
intellectual disability in 1952, since then
worked to change the educational and social
situation for them. (手拉手(Hand in Hand)：為
由日本融合協會發行的月刊，此協會於 1952
年由心智障礙者家長成立，自此之後為改變
障礙者的教育及社會待遇而努力)
2. Japanese Association on Intellectual Disability
(in Japanese: Nihon Chitekishougaisha
Fukushi Kyoukai) is the largest service
provider's organization with 3,100
organizations.(日本心智障礙協會 JAID：乃日
本最大的服務提供者協會，有 3100 個機構
參與)
3. Japan Inclusion (in Japanese: Zennihon
Teotunagu-ikuseikai) is the organization of
parents and related people. Half of 300,000
members are parents of people with
intellectual disability) (日本融合協會：乃是由
家長及相關人士成立的組織，共有 30 萬會
員，其中一半為家長)
4. Japanese Society for Rehabilitation of Persons
with Disabilities (in Japanese: Nihon
Shougaisha Rihabilitation Kyoukai) is an
organization to advocate for people with
disability.(日本障礙者復健協會：乃是為障礙
者成立的倡導團體)
5. Monetary System for the Support (in Japanese:
Shienhi Seido)
This system was introduced in 2003. While the
former "Placement system" which enabled
government to have leading power on decision
making, new Support System emphasize the
will of people with intellectual disability. The
local governments evaluate the needs of each
person and decide the expense for the
individual service.(支持的經費補助方案：乃
是 2003 開辦的新制度，之前安置的給付模
式(placement system)主要由政府作決定，但
支持的經費補助方案則由地方政府評估每
個人的個別需求並決定服務經費)
6. "Normalization”: monthly periodical of
Japanese Society for Rehabilitation of Persons
with Disabilities ( JSRPD)( 「正常化
(Normalization)」：乃是由日本障礙者復健協
會出版的月刊
」"Support": monthly periodical published by
Japanese Association on Intellectual Disability
(JAID), the largest service provider's organization in
Japan(「支持(Support)」：乃是日本心智障礙協會
出版的期刊

278

Reference ２
This report was written up in a periodical "Support" published by Japanese Association on
Intellectual Disability (JAID), the largest service provider's organization in Japan, put together a
special issue on deinstitutionalization in May 2003 and reported at the 16th Asian Conference on
Intellectual Disabilities in August 2003.

Why persons with intellectual disabilities cannot live
his/her own home?
～ The Movement of Deinstitutionalization in Japan ～

Kanji WATANABE
This report was written up in a periodical "Support" published by Japanese Association on
Intellectual Disability (JAID), the largest service provider's organization in Japan, put together a
special issue on deinstitutionalization in May 2003 and reported at the 16th Asian Conference on
Intellectual Disabilities in August 2003.

1. The meaning of deinstitutionalization

In the early 20'h century, people with intellectual
disability were institutionalized in advanced
western countries.
Why did they institutionalize those people?
So called "superior" people were considered to be
valuable while "inferior” people were worthless.
Immobile, speechless people who could not earn
their living were classified as useless. The
genetics then preached that children born from a
marriage with a person with low intelligence were
to grow into criminals or prostitutes, and further
stirred up the fear of people.
People who are afraid started to isolate those
people in institutions to protect their society. Large
scale and isolation are the key word for institutions
of this time. They tried to send as many people as
possible to institutions which were isolated in great
distance. The average number of people in an
institution from 1950 to 1960 in America is over
1500. The large scale expressed by the figure is far
beyond our imagination in Japan. As
Bank‐Mikkelsen pointed out there were institutions
where people were treated in groups just like
"animals." Hitler took advantage of eugenics, and
sent many people with disability to gas chambers.
The dreadful event in the early 20th century
causes vague anxiety on the human nature. Do
we own latent motive for prosecuting people only
because they are incapable?
Towards the latter half of 20th century, the
discussions on human rights became active in many
countries. The issue of racial segregation became
to attract public attention, and human rights and
empowerment were advocated. Rights of women
and children were recognized. Many people who
had been chased away to an obscure corner of the
society started to assert their own rights, and
human right declaration of intellectually
handicapped was adopted in the United Nations in
1971.

279

The notion of Normalization was proposed in
such a historical background, and became
prevailing. Bank‐Mikkelsen visited some of the
institutions one day, and asked himself, "Why do
those people have to stay in institution?" He could
not come up with a convincing answer, and
thought that people with intellectual disability
should be helped so that they could live in a
normal setting just like ordinary people as himself.
The poor living conditions at institutions started
to draw people's attention, and they began to
question the inhuman treatment for the people in
institutions. The flow of deinstitutionalization
started and soon spread in Scandinavian countries,
North America, England, and Australia. People with
intellectual disability moved back to their
community and people in the community became
to be acquainted and understand those people and
began learning to live with them accepting them as
a member of their community.
It was difficult to acknowledge individual needs in
institutions where block treatment was typically
employed. The term institutionalization then
became the symbol of dehumanization in closed
living setting. Deinstitutionalization means getting
out of institution and so it should be used as
synonym for community living which fulfills true
humanity. People with intellectual disability finally
started their life as a quintessentially man after
various revolutions which took place in the 20th
century.

2. The Process for deinstitutionalization

It is often said that Bank‐Mikkelsen is the
biological parent of the notion of
institutionalization, Bengt Nirje being the foster
parent. (Ohkuma, Hand in Hand, 1999/6 p.26}. Mr.
Nirje was invited to the annual meeting of Japanese
Association on Intellectual Disability (JAID) in
Tokushima Prefecture in 1998. He visited Aichi
Prefectural Colony on the way back, and attended a
small gathering for staff members of institutions
and parents of children with intellectual disability.
The Figure 1 was handed to Mr. Nirje by the author
to make clear comparison of Japanese situation
with that of other western countries.

First of all, the Figure 1 clearly shows that the
number of people in institutions kept growing in
Japan while, in four western countries, the number
kept decreasing because of deinstitutionalization.
Furthermore, in Sweden there were almost twice
as many people as the present Japanese population
in institutions in 1970. If it were converted into
Japanese population, almost 200,000 people
moved to their own home such as group homes
from institutions.
Various people including parents, staff members
of institution, and professionals were engaged in
the movement of helping people with intellectual
disability to get out from institution to their
community. While parent association tried to
promote the community living, some parents
preferred to keep their children in the institution
because they thought their children would be safer
and protected there. Some staff members of
institutions promoted community living valuing
human rights and the future of the people with
intellectual disability, and other staff members
were against the movement because they were
afraid of losing their job. After learning the actual
situations of community which were not
necessarily ideal, some believed that people with
intellectual disability were forced back to
community because it was too costly to keep them
in institutions.

280

Where did people go after leaving institutions?
They aimed at their own home such as group home
or apartment which would enable them to live
their own life, and did not go back to their parent's
home or other institution.

3. The reasons for the slow development of
deinstitutionalization in Japan.

After the Second World War, the support for
people with intellectual disability started by
building residential institutions both for children
and adults. There were hardly any services for
those people at that time, and parents had to be
totally responsible for taking care of their children.
I have heard from parents that they had to bind the
child to a pillar with rope while going out for
shopping, or toilet wall became blackish red from
self‐injuring behavior.
The number of special schools gradually grew, and
even severely disabled children began to receive
the benefit of school education. For the children
who graduated from school more day centers were
built to secure work place for them. Half‐way
houses and residential institutions started
programs like short stay or group homes to support
people who returned to communities.
The government announced a new "Planning for
the Handicapped" in 1995, and started a
community living support program by building
Community Support Centers for the people with
intellectual disability in an area of 300,000
populations as a nucleus for community services.
The care management training program also
started in order to establish services responding to
individual needs. Some staff members of
institutions also participated in developing
community living support programs.
This year, "Monetary System for the Support (in
Japanese, Shienhi Seido)" was introduced. The
support system is changing from the government
versus service providers, to the network of people
with intellectual disability themselves and local
governments backed up with service organizations,
prefectures and the government.
The situation of services in 2002 is shown in
Figure 2.
Nearly one third of adults with intellectual
disability (approximately 120,000 people) are living
in institutions, and the rest two thirds of them
(approximately 220,000 people) are living in
communities. Among those who are in
communities, about 20,000 people are
independent living in their own home or apartment
and about 10,000 people are living in group homes.
The other approximately 190,000 people are
living with their parents and siblings. (Shibata,
Support, 2002/6 p.23). Only less than 1% of people
living in institutions moved from institutions to
their communities last year. Why is the movement
so slow? It is because there are no laws stipulating
the movement, nor the government’s concrete
long‐term blueprint for community living support
to develop services like providing places for living
and work. The people in the field such as
administrators and staff members working at
residential institutions also seem to be partly
responsible. They have been trying very hard to do
their best for people with intellectual disability in
institutions with the expense paid by the
government. However total dependence to the
governmental measures and budget which came
rather handy might have blinded them from seeing
their support on the broader view putting
themselves in the very position of people with
intellectual disability.
When the author himself looks back on his long
career at Aichi Prefectural Colony (one of the

281

conglomerate service centers for people with
intellectual disability, consisting of residential
institutions, job training center, residential school,
medical hospital and research center), he had to
admit that it was exactly what Prof. Maruyama
argued in his book " One Who Sleeps on His Right"
(Masao Maruyama, 1986 "Nihon‐no‐Shisou",
Iwanami p.154)
According to Maruyama, right is not just
something sitting there like an ornament, but it is
what one has constantly strived for acquiring it. If
one only keeps sleeping on one's right, one has to
pay for neglecting the effort, and be surprised to
see the world taken over by someone like Hitler
overnight. The straight line representing the
constant grow of number of people being admitted
to institutions in Figure 1, seems to symbolize the
negligence of the people in this country who are
supposed to be advocates for people with
intellectual disability. They kept sleeping and forgot
to question as a person the right of those people
justly deserve and what they truly hope for.

4. Measures for enabling people with intellectual
disability to move out of institution to
community

(1) To ensure homes and work
Naturally one needs a place to live and work in
order to live in a community.
But at present, only 30,000 people are living in
apartments or group homes. There is a shortage of
home for approximately 190,000 people.
Approximately 80,000 people do not own job or
places for activities, and unemployment rate
reaches 36%. There are more people coming back
to communities in this state, and finding homes for
those people is extremely difficult.
Some active proposals have been made in
periodicals such as Support, "Group Homes for
10,000 people every year" (Fukuoka, Support
2002/10 p.20), or "1,000 more group homes every
year!" (Yamaguchi, Hand in Hand 2002/7 p.30).
Many people with intellectual disability started
their new life with their friends in group homes,
and in a town like Date in Hokkaido (northern
island), they have worked out a system which
proved to be quite successful bearing good results.
The speed is rather slow, but the reformation is
being carried out steadily.
Some people think that a new approach to
revenue would enable them to build more group
homes instead of institutions (Ogihara, Hand in
Hand, 2002/11 p.16).
With the present system, the cost for a person
becomes one fourth of the expenses required for
living in institution if he/she moved to a group
home. Where did that the rest three fourths go?

In England, total cost required for maintaining
institutions was used for expenses for
deinstitutionalization. It took care of reinforcing
community services, and provided further support
for the severely disabled left in institutions. They
even borrowed money from bank on their
institutions which was built on a vast site.
In Japan, the government is cutting down the
expenses to one forth because those people, who
had been sharing a room with three others in
institutions, are now keeping his own room all to
himself. The human right for those people seems to
be obviously ignored. Comprehensive long‐term
measures are required for successful
deinstitutionalization.
The national basic planning is asked for in order
for people to move from institution to community.
But it is the staff members of institutions who
could actually frame and carry out the planning
because they are the ones who know the people
living in the institution best. An item describing the
extent and degree of services required for each
individual could be added to the annual survey by
(JAID), and concrete planning for individual
deinstitutionalization might be made on the basis
of the results of survey. The staff members should
play the leading role in promoting the movement
because they have been in close contact with the
people supporting them.

(2) "Monetary System for the Support" just started
The key to "Monetary System for the Support" is

282

how much listening and responding to individual
voices is assured.
When people with intellectual disability are asked,
"How did you apply for a group home?” they
sometimes answer, "I didn't, because I'm still in
good health." or "It is difficult for me because in
group homes they say you have to use your own
pension." "Monetary System for Support" has
started with ideology preceding the understanding
of the users in spite of the effort of the parties
concerned. But, at least the term like group home
or home‐help is frequently spoken and heard, and
getting attention of the people nationwide.
The difference between support and aid or
assistance lies in the fact that support includes the
future planning of the user's own life style
considering the necessity of group home while aid
or assistance is mainly concerned with the need on
the spot. It is important that citizens in community
would listen to and understand the voices of the
individuals through the effort of municipal
administration.
It is hoped some day in the near future municipal
planning for the people with disability is completed
as a result of individual planning made by the
cooperation of service providers, municipal
servants in charge, civic groups, and care managers
who would be arranged for each person as an
advocate placing the individual in the center.
"Monetary System for Support" is the departure
of a ship for a long voyage

(3) Not that way, but this way
Some time ago a movie called "Not that way, but
this way" was made by the people in the field of
intellectual disability. "That way" meant institution
where block treatment was practiced, and "this
way" meant community living.
In the periodicals like "Support", "Hand in Hand
(monthly periodical of Japan Inclusion)" and
"Normalization (monthly periodical of Japanese
Society for Rehabilitation of Persons with
Disabilities, JSRPD) ", there have been many
articles about community living appearing. It seems
the great ship, Japanese Association on Intellectual
Disability (JAID), which has been responsible for
the support for people with intellectual disability is
gradually shifting its course to "this way". The port
the ship is heading might lead to the society where
support for people with intellectual disability is
continuous with that for the whole people in that
society.

Poet, Toge Sankichi, wrote a poem about the
atomic bomb:

Bring back our fathers!
Bring back our mothers!
Bring back our grandparents!
Bring back our children!
Bring me back!
Bring back all the people who were lost
For as long as there are human beings,
Bring back peace, unbroken peace.

The poem could be rewritten as follows.
Let the people with intellectual disability take their
life back by moving from institution to community.
My lost humanity thus is retrieved, and so is the
humanity of all the people related to me.

Discussion
1. Characteristics of Residential Service in Japan
In Japan, the institutionalization of people with
intellectual disability started in 1960's, and one out
of three adults is still living in institutions as
mentioned before. The scale of institution and
administrative structures are varied, but most of
the user's life there is much lower in quality
comparing from that of ordinary people.
Although Japanese government is aiming at
deinstitutionalization, the pace is slackened by
various reasons.

The Japanese residential institutions have some
characteristic features as follows.
(1) Since residential institution started rather late
after the Second World War, they do not share
horrified history with residential institutions in
some western countries.
(2) The scale of residential institutions is medium
or small sized.

283

(3) They are not so isolated and located in the
vicinities of communities.
(4) The staff member's level of education is
comparative high and they could readily
adjust themselves to the movement of
community living.

In addition to the paucity of social resources in
communities, these characteristics of residential
institutions helped the government not to abolish
residential institutions as some of western
countries and rather to utilize them to develop
community care. Group homes and short stay
program as respite care service have been
developed by residential institutions through the
subsidy from the government. Community Support
Centers are also supported by residential
institutions. The largest service provider's
organization, Japanese Association on Intellectual
Disability, recognize both approaches of residential
institution and community care. Although
"Monetary System for Support" is introduced to
promote community services by local governments,
but scarcity of resources such as care managers,
residential homes and job placement makes it
difficult to meet the expectation.
2. Various style of residential services
Various residential services lay on the continuum of
two extremes, residential institution being one
extreme and Community Support Center the other.

Residential institution:
Usually, there are a certain fixed number of
people living in a residential institution, and all the
daily activities such as work and leisure are taken
care of in the institution. The positive aspects of
institution are the easy management with block
treatment, and physical and mental safety is readily
secured. The negative aspects on the other hand
are the lack of user's freedom.
The choice and decision making opportunities are
limited and users fail to learn to construct their
own life and becomes dependent. They are too
isolated from communities to fulfill their own
needs and people in the community also loose
opportunities to understand people with
intellectual disability.

Community Support Center:
Community Support Centers are planned in many
western countries. They are, for example, regional
centers in the State of California or community
centers of local government in England.
Community Support Center is originally designed to
empower basic rights of people with intellectual
disability as a citizen in a community. Its function is
to grasp the needs of all the people with
intellectual disability in the community, planning
and providing services for those people. In general,
Community Support Centers are not directly
involved with housing, work or leisure programs.
In western countries, direct services are less and
less included in the functions of Community
Support Center, but if there are no institutions or
day service centers in the community in some of
the developing countries, Community Support
Center may serve the both functions. Various
attempts and experiments are being carried out in
various countries in their own culture in order to
promote open residential service which is not
isolated. There should be many discussions among
those countries sharing and learning from each
other's experiences.

Glossary
1. Hand in Hand: monthly periodicals published by
Japan Inclusion. This organization started as the
parent association of persons with intellectual
disability in 1952, since then worked to change the
educational and social situation for them.
2. Japanese Association on Intellectual Disability (in
Japanese: Nihon Chitekishougaisha Fukushi Kyoukai)
is the largest service provider's organization with
3,100 organizations.
3. Japan Inclusion (in Japanese: Zennihon
Teotunagu‐ikuseikai) is the organization of parents
and related people. Half of 300,000 members are
parents of people with intellectual disability)
4. Japanese Society for Rehabilitation of Persons
with Disabilities (in Japanese: Nihon Shougaisha
Rihabilitation Kyoukai) is an organization to
advocate for people with disability.

284

5. Monetary System for the Support (in Japanese:
Shienhi Seido)
This system was introduced in 2003. While the
former "Placement system" which enabled
government to have leading power on decision
making, new Support System emphasize the will of
people with intellectual disability. The local
governments evaluate the needs of each person
and decide the expense for the individual service.
6. "Normalization”: monthly periodical of Japanese
Society for Rehabilitation of Persons with
Disabilities ( JSRPD)
7. "Support": monthly periodical published by
(JAID), the largest service provider's organization in
Japan,

285

「以個人為中心之支持」的促
進因子與干擾因子
─智能障礙者團體家庭中照顧
服務員之研究4
作者：Akiko Yakushiji Kanji WATANABE
翻譯：張家寧台北大學研究生
校譯：劉素芬台北大學社工系助理教授
摘要：
本研究旨在闡明智能障礙者之團體家庭
(group home)中，照顧服務員(care staff)提供以個
人為中心之支持(person centered support)的促進
因子(facilitating factors)和干擾因子(interfering
factors)，以取得住民支持品質的基本資料。研究
方法使用照顧服務員訓練工作坊當中的團體討
論之文件紀錄，並用修正版紮根理論進行分析。
研究發現中，干擾因子為：(1)「住民意象的生成
與固著(generation of the image of resident and its
fixation)」(2)「團體家庭的意象的生成與固著
(generation of the image of group home and its
fixation)」(3)照顧服務員個人價值的「自身的 le
邏輯(my own logic of le)5
」 (4)支持性活動

4
Akiko YAKUSHIJI, Kanji WATANABE. (2009). Facilitating
Factors and Interfering Factors of “the Person
Centered Support”－A Study of the Care Staff at
Group Home for Persons with Intellectual Disabilities.
Japanese Journal of Social Welfare, 5, 147‐157.
5
le 有諸多意涵，包含家戶(household)、建築物本身
以及家庭。比喻上和傳統上而言，其可以表示人
群、界線以及某種像是「內部(inside)」的事物，取
決於它怎麼被使用。(Sonia Ryan(2006):Japan and
national anthropology. A Critique, Routledge, East Asia
Series, p.142)
(support activities) 未以個人中心為導向，其主要
原因很可能來自於團體家庭中的支持性活動通
常只由一位照顧服務員工執行，且住民為智能障
礙者 (5)在上述的團體家庭環境下，照顧服務員
產生了作為團體家庭唯一一名工作者的「成就
感、滿足和虛榮 (sense of achievement,
complacency and pretension as a single worker at a
group home)」，進一步強化「未以個人中心取向
為導向的支持性活動 (support activities not
oriented to the person centered approach)」。而研究
發現之促進因子為(6)「對於個人支持之覺察
(awareness of one’s own support)」，此來自於照顧
服務員反思自身的支持性活動，以及他們對於住
民影響的機會。本研究期待以個人中心取向為主
的支持活動可以透過此一促進因素加以發展。
一、簡介
「智能障障者福祉法」（the Welfare Law for
Persons with Intellectual Disabilities, 1960）制定
後，智能障礙者的居住服務開始對於制度面向有
所關注(Watanabe, Mita, Horio et al 1998:72-81)。
另一方面，從 1960 年代後期開始，非營利組織
開始著手成立約 4 至 5 人的「居家生活(home
living)」。自 1970 年代後期起，有鑑於地方政府
隨著逐漸普及的正常化原則（ principles of
normalization）（Ericsson, Kent 2002）所設立的補
助制度（subsidy system），國內部分地區已開始
發展「居家生活（home living）」。「知的障障者地
域生活援助事業」 (The National Project on
Community Living for Persons with Intellectual
Disabilities)於 1989 年制定，而後，智能障礙者的
團體家庭開始逐漸增加，目前國內正在運作的團

286

體家庭共有 4,216 間 (2005 年 1 月) 6
。團體家庭
中支持住民(約 4-7 人)的人是直接提供支持的工
作人員，被稱作「照顧服務員(care staff)」。1 間
團體家庭通常被分配 1 至 3 名照顧服務員，但實
際上支持性活動(support activities)大多由 1 名照
顧服務員執行。照顧服務員支持許多住民日常生
活的各種需求，例如諮詢、健康管理和家庭聯繫
協調，其對於住民的生活品質有很大的影響力。
但是，由於補助制度的性質，大部分的照顧服務
員為兼職員工，且他們大多為正在撫育孩童的中
年家庭主婦，難以要求其資格和經歷，且所受訓
練並不充足7
。據此，以個人為中心之支持(the
person centered support)被視為社區居住的支持原
則(Keith, Kenneth D. and Schalock, Robert L.2000;
Holburn, Steve and Vietze, Peter 2002)，但未必實
際落實，且難以在提供住民日常支持的時候，將
焦點放在住民的自我選擇與自我決定。
到目前為止，針對日本智能障礙者之團體家
庭中照顧服務員的相關研究，當中有部分是闡明
具體支持方法的研究(Yunok 2003:63-75)、支持的
技術性技巧(Komatsu 2002:106-117)、支持性活動
的衝突和兩難(Komatsu 2001:23-33)等，但未有研
究從個人中心觀點切入探究相關住民生活品
質。因此，本研究旨在闡明以個人為中心之支持
中的促進因子與干擾因子，以獲得基本資料進而
改善團體家庭中照顧服務員的支持品質。本研究
中，以個人為中心之支持的定義為一種得以使團
體家庭中的住民自我決定、為其豐富生活所需負
起之責任的支持。

6
WAM NET(Welfare and Medical Service Network
System)由「独立行政法人福祉医療機構」管理
(2005.1.27) http://www.wam.go.jp
7
根據 Yakushiji(2005)的資料，一年舉辦一次的訓練
工作坊為照顧服務員主要的訓練課程，10%的照顧服
務員會另外參加國內團體家庭的工作坊。
一、研究方法
(一) 研究協同者(research collaborators)：
研究協同者為參加第 11 屆團體家庭和「家
庭居住 (Home living)」照顧服務員工作坊的 48
名照顧服務員(2004 年 7 月 10 到 11 日)8
，此工作
坊由 A 縣的智能障礙者非營利組織負責籌備安
排，而上述照顧服務員在 92 間由中央和地方政
府補助的團體家庭以及 2 個由地方政府補助的
「(家庭居住)Home living」工作。所有參與者幾
乎皆為女性，僅有一名男性。
(二) 資料蒐集方法
為了蒐集照顧服務員對於提供日常支持的
真實看法，本研究採用團體討論的紀錄資料。透
過討論的過程，通常在團體家庭中單獨執行支持
性服務的照顧服務員，可以與來自其他團體家庭
的照顧服務員交換意見。另外，討論中的團體動
力運作，也使得參與者在表達看法時會面對意見
一致或不一致的情形，進而思考與談論其日常生
活經驗(Uwe, Flick, 1995:145-146)。
更進一步提供較具體的日常支持情境，意即
「打掃自己的房間」、「睡覺時間」、「金錢管理」、
「飲酒和抽菸(drinking and smoking)」等，鼓勵
照顧服務員表達於上述情境發生時他們所提供
支持性活動的看法。為了使討論過程達到一致
性，過去有擔任主持人經驗的照顧服務員被分配
至各團體，事前告知這些主持人這次討論之目
的，並指導他們如何帶領討論。考量團體組成，
發放一份問卷，問卷項目內容包含團體家庭名
稱、年資、年齡以及支持傾向(support tendency)。

8
作為社區居住方式的區分。自 1994 年開始，
Okayama 縣智能障礙者協會舉辦兩天訓練工作坊給
「團體家庭(group home)」(中央和地方政府補助)和
「家庭居住(home living)」(由地方政府補助)的照顧服
務員參加。

287

共有 6 個團體，每個團體包含 6 至 8 名照顧服務
員。本研究的第一作者也是一名照顧服務員，並
進入到某一團體討論中擔任主持人。取得所有參
與者同意，討論內容以數位錄音筆進行錄音，而
所有錄音檔皆整理為逐字稿。
(三) 研究方法
本研究採用修正版紮根理論法 (modified
grounded theory approach, M-GTA)作為研究方
法。紮根理論法(grounded theory approach, GTA)
在 1960 年代由醫療社會學家─Glaser 和 Strauss
所提出，為一種從原始資料生成理論的質性研究
方法。此方法受到人群服務領域關注，例如護
理、健康、醫療、復健、社會福利、教育和臨床
心理學(Kinoshita 1999)等領域。Kinoshita 進而以
GTA 為基礎，進一步發展為 M-GTA(Kinoshita
1999; 2003)。
採用 M-GTA 的原因在於，當研究者已確認
其價值的特定研究主題範疇時，此方法適合預測
和解釋人類活動(Kinoshita 2003)。本研究以個人
為中心之支持的促進因子和干擾因子作為研究
主旨，試圖解釋 A 縣的智能障礙者團體家庭中照
顧服務員的觀念和行動，分析參與者陳述的細微
差異和表達方式。而資料中所呈現的脈絡被視為
重要因素，因為其反映出人類認知、活動、情緒
以及其所關心的因子和情境，皆在資料中加以分
析。
(四) 分析方法
第一步先閱讀團體討論的逐字稿，掌握陳述
內容中說話者的情緒和細微差異，進而以個人為
中心之支持的干擾和促進因子為主題(theme)，標
示出相關的陳述內容，這些陳述詮釋的內容可檢
驗研究參與者的認知、活動和情緒。為了避免任
意詮釋，過程中持續針對相似和相異內容進行比
較分析，接著建立概念。當新概念產生後，找出
可被現有概念解釋的變異性(variation) (具體例
子)，以確認概念的有效性。產生的概念被記錄在
工作表(worksheet)上，包含概念名稱、定義、變
異性(variation) ( 具體例子)。另外，對於資料詮
釋的相關想法會記錄在理論性筆記(theoretical
notes)，幫助連結不同概念與組織分析的資料。
因此，新的概念產生，且同時概念間的關係連
結，進而將一組概念形成範疇(categories)。
分析過程僅由作者執行，但為了確保分析品
質，分析結果與另一位具有照顧服務員經驗的研
究者一同討論。另外，考量倫理議題，分析結果
交予數名研究參與者進行確認。
根據 M-GTA，分析和討論同時進行並作為
詮釋過程的一部分，一併記錄在以下內容中。
二、研究結果與討論
為了要闡明以個人為中心之支持的促進因
子和干擾因子，進而加以分析照顧服務員的意識
(consciousness)特質以及他們的行為如何被這個
特質影響，於是產生 2 個核心範疇。核心範疇(core
categories)、範疇(categories)和概念(concepts)分別
以方括號【】、尖括號〈〉和波形括號{ }
表示。【自身的 le 邏輯(my own logic of le)】作為
與干擾因子相關的觀念意識，而【對自身支持的
覺察(awareness of one’s own support)】則是作為
促進因子相關的觀念意識。在呈現上述觀念意識
的相關陳述中，針對實際支持性活動的陳述進行
分析，並產生兩個核心範疇─【支持性活動未以
個人中心取向為導向 (support activities not
oriented to the person centered approach)】與【以
個人為中心之支持方法的特徵(a sign of the
person centered approach)】。
為了要說明核心範疇─【自身的 le 邏輯】，以
下成立兩個範疇：〈住民的意象生成與固著
(generation of the image of resident and its

288

fixation) 〉與〈團體家庭的意象生成與固著
(generation of the image of group home and its
fixation)〉，上述兩個範疇分別包含兩個概念：{團
體家庭作為家庭生活(group home for family life) }
和 { 對團體生活的強調 (emphasis on group
life) }；以及{對家務職責的特別關心(particular
concern for domestic duties}和 {服從的重要性
(stress on obedience)}。另外，{無法接受將住民視
為與自身相同的人(Inability to accept resident as
the same human being as oneself)}此一概念亦被
建立。此核心範疇【自身的 le 邏輯】似乎會影響
另一個核心範疇─【對於自身提供支持之覺察】。
〈對自身 le 邏輯的支持(support by my own logic
of le)〉此一範疇包含兩個概念─{善意的糾正
(correction of goodwill) }與{未直接正視住民的控
制方式(control without facing resident)}，以及另
外兩個概念─{如同監護人般的言論(remarks like
guardian) }和{情緒優先(emotion first) }。而{作為
團體家庭唯一一名工作者的成就感、滿足和虛榮
(sense of achievement, complacency and pretension
as a single worker at a group home)}此一概念亦產
生，被認為對核心範疇─【自身的 le 邏輯】之中
的〈對自身 le 邏輯的支持〉有影響。而概念─{與
其他照顧服務員的摩擦(sense of friction with
other care staff members) }亦被建立，此概念被認
為會影響【自身的 le 邏輯】之中的【支持性活動
未以個人中心取向為導向】。
為了要解釋核心範疇─【對於自身提供支持
之覺察】，以下四個概念被成立：{對於自身表達
之情緒的覺察(awareness of one’s own expressed
emotion) } 、 { 對於自身提供之支持的反省
(reflection on one’s own support) }、{對於自身帶
給住民影響的覺察 (awareness of one’s own
influence on resident }與{使自身提供之支持的品
質朝向進步(toward the improvement of the quality
of one’s own support) }。而核心範疇【對於自身
提供支持之覺察】則被認為可以影響【以個人為
中心之支持方法的特徵】，包含作為實際支持性
活動的{傾聽住民的感受(listening to resident’s
feeling)}。{確認和肯認住民的意願(confirming
and recognizing resident’s will)}來自於{傾聽住民
的感受}此一概念，也會影響【對於自身提供支
持之覺察】。
促進因子和干擾因子被認為應該會在同一
名照顧服務員身上相互作用。
針對上述範疇的關係，以下用圖示進行說明

289

圖一以個人為中心之支持的干擾因子與促進因子之概念圖
(一) 干擾因子(Interfering factors)
1. 【自身的 le 邏輯(my own logic of le)】
作為干擾因子中的意識特質，【自身的 le 邏
輯】此一核心範疇被建立。一名照顧服務員開始
在團體家庭的未知世界中工作9
，並且在支持住民
的實務過程中，塑造他/她對於團體家庭與住民的
意象。
這些意象停留在照顧服務員的心中，沒有改
進，反而成為固著的意象，產生【自身的 le 邏
輯】。在這些範疇和概念的根本，似乎存在照顧
服務員的價值觀─他/她無法接受住民是和他/她
自己一樣的個體。
【自身的 le 邏輯】由兩個範疇組成─〈住民
的意象生成與固著(generation of the image of
resident and its fixation)〉與〈團體家庭的意象生

9
根據 Yakushiji(2005)的資料，10%的照顧服務員曾在
社會福利領域中有工作經驗。
成與固著(generation of the image of group home
and its fixation)〉，以及{無法接受將住民視為與自
身相同的人(Inability to accept resident as the same
human being as oneself) }此一概念。
(1) 〈團體家庭的意象生成與固著(generation
of the image of group home and its
fixation)〉
照顧服務員和住民如同家庭成員，而這樣的
家庭是由照顧服務員的價值觀所創造，這預設住
民應要尊重團體生活，而非個別生活，且住民被
期待在團體當中應表現良好。前述對於團體家庭
的定義來自於剛開始在團體家庭工作、先前沒有
任何人群服務或訓練經驗的照顧服務員。在支持
住民的過程中，照顧服務員依其方便而制定一個
想望的家庭形象，且這個形象是固定的
(fixated)。此範疇由兩個概念所組成，分別為{團
體家庭作為家庭生活(group home for family life)}

290

以及{團體生活的強調(emphasis on group life)}。
(a){ 團體家庭作為家庭生活(group home for
family life) }
「當然，我們感覺像是一家人，就像是媽媽
和小孩」、「他們叫我媽媽......我們的督導指導我
們稱呼他們每個人的名字，我問為什麼？......我
問他們，他們說我們並沒有媽媽，稱呼你媽媽對
我們來說滿好的。接著我說，就讓我們把這個地
方成為我們的家吧......吃快一點因為這是我們的
家......讓我們一起吃飯、一起洗澡......因為這是我
們的家，讓我們像是真正的家庭一般過生活。」
該名照顧服務員認為團體家庭是屬於一家人的
家園，並嘗試創造出一個真正的家庭。她開始成
為母親，住民彼此為兄弟姊妹。
(b) { 對團體生活的強調 (emphasis on group
life) }
「如果你對於每件事都允許有自由，而且尊
重他們的想法，那麼你就不需要照顧服務員或老
師了。必要時你需要掌控他們，因為我們住在一
起.......所以，在某種程度下，我覺得團體生活為
優先，其次才是個人生活。我覺得他們開始表現
出對於團體生活準備就緒和相關跡象是最好
的，我感到最滿意的就是看到他們的觀念意識展
現他們已經準備好要進入團體生活。」如同前述
內容所示，該名照顧服務員希望住民意識到團體
生活並要求他們按團體生活行事。「他很奇怪，
感覺他每天都去日托中心(day center)，從來不去
其他地方，他沒有參加今天住民的交換方案
(exchange program)10
也是理所當然的。」此陳述
呈現出該名照顧服務員對於住民依個人意願進
行的個別活動抱持著負面感受，也可看到他(照顧

10
住民的交換方案和訓練工作坊是在同一大廳的不
同房間舉辦，由住民規劃的團體討論和娛樂活動被執
行。兩者是舉辦在同一天，所以住民跟照顧服務員都
可以參與此方案。
服務員)對於團體生活的偏好。
(2) 〈住民的意象生成與固著(generation of the
image of resident and its fixation)〉
此範疇的說明如下。住民應被教導所有在社
區居住必要的家務職責(domestic duties)。另外，
由於住民為智能障礙者，而且他們被期待要聽從
其身邊人的話，部分照顧服務員堅信家務職責的
重要性，且高度以能力作為評價。為了要學習聽
身邊人的話，住民首要應學習遵守照顧服務員的
指示。此範疇由兩個概念組成─{對家務職責的特
別關心(particular concern for domestic duties}和
{服從的重要性(stress on obedience}。
(a){ 對家務職責的特別關心(particular concern
for domestic duties )}
「過去兩、三年間，我試著教他們，讓他們
在離開這個地方獨立時能夠自己完成特定事
情。怎麼洗米、如何開啟電器用品的計時器、怎
麼洗衣服、家庭打掃、馬桶清理、浴室清掃等，
這些是他們在離開這個地方要有能力自己做的
責任。」「舉例來說，我讓他們輪流值夜班、早
班、煮米，因為他們最終需要學習自己煮少量的
米、實際操作和清潔。」「但是這個障礙者很棒，
她會縫紉和編織，而且都會在其他人忘記要打掃
廚房時去完成這個責任。」有些照顧服務員將團
體家庭視為訓練住民進入社區生活的準備，並且
對獨立生活存在有偏見的想法─普遍來說住民應
有能力完成家務職責。照顧服務員對於家務職責
有自信，此來自他們擔任家庭主婦的經驗，且認
為教導住民這些技巧是非常重要的。因此，具備
家務職責的能力會獲得特別高的評價。
(b) {服從的重要性(stress on obedience) }
「......他能夠做到任何我們告訴他去做的事
情，例如準備早餐。」「蔬菜對他們有益，當我
看到有人將青菜留在餐盤上沒有吃時，我告訴他

291

蔬菜可以清血液，血液會在一秒內跑進全身，如
果你的腦袋阻塞的話，你就會倒下，所以吃完你
的青菜。接著他說，好，我了解。他的回答方式
是很傑出的，我跟他們說不論我告訴他們什麼，
他們都應該要迅速地回答『好』」。照顧服務員傾
向相信他們永遠是對的，當他們在給住民指示
時，住民被期待要服從地遵從他們。「我知道他
有這個能力，而且有的時候我討好他，像是說你
在做這些事情，你都很厲害，你怎麼不幫其他人
一起弄，但他會故意不這樣做」。有些照顧服務
員會對於不聽從他們的話的住民產生負面情緒。
(3) 其他範疇
(a){ 無法接受將住民視為與自身相同的人
(Inability to accept resident as the same
human being as oneself) }
「我開始感到納悶，我們是在糟蹋這些來自
『支援費制度(assistance benefit supply system)』
的所有經費，因為他們都在輕鬆地玩耍。」「當
我開始工作，他每天晚上通常會在吃晚餐前喝
酒，一口氣喝完一杯清酒，每個禮拜我一直告訴
他，他是唯一一個這麼放肆的人。當然，這是他
自己賺的錢，他喜歡怎麼花就怎麼花，但我擔心
可能給他過多自由。」照顧服務員對於住民擁有
與一般人相同的娛樂時會有些猶豫，似乎她並不
相信障礙者可以等同於一般人，而且對其有些輕
視。「我們的住民完全不會說話，他們不會有任
何情緒反應，他們不會吵鬧。我們不知道他們怎
麼想，我的團體家庭相較下一定存在很大的能力
差異......我聽過有些提供給想結婚或如同家庭般
生活的團體家庭，我根本無法想像在我們的團體
家庭會有這樣先進的想法，這無法運用在我們的
家，這是我的感想。」「他們不理解任何事情，
所以他們不記得什麼是好的、什麼是壞的」。這
名照顧服務員根據他自己對於智能障礙者的意
象來評價住民，而且相信住民的生活取決於他/
她的障礙程度。
這個概念似乎作為構成兩個範疇─〈團體家
庭的意象生成與固著(generation of the image of
group home and its fixation)〉以及〈住民的意象生
成與固著(generation of the image of resident and
its fixation)〉的基礎。
2. 【支持性活動未以個人中心取向為導向
(support activities not oriented to the
person centered approach)】
此核心範疇【支持性活動未以個人中心取向
為導向】是干擾以個人為中心之支持的行為特
質。這些支持性活動皆受到【自身的 le 邏輯】的
意識特質影響。而照顧服務員未覺察其對於無法
接受住民和自己一樣為人的價值觀和情緒，似乎
也表露在他們的支持性服務上。【支持性活動未
以個人中心取向為導向】是由〈對自身 le 邏輯的
支持(support by my own logic of le) 〉這個範疇所
組成，以及兩個概念─{如同監護人般的言論
(remarks like guardian)} 和 { 情緒優先 (emotion
first)}。
(1) 〈來自自身 le 邏輯的支持(support by my
own logic of le) 〉
〈來自自身 le 邏輯的支持〉被定義為透過行
為或態度技巧性地操控，以改正居民的錯誤以及
正確引導他們的支持持剛開始在團體家庭工作
卻又缺乏對團體家庭重要意義有所認識的照顧
服務員，其【自身的 le 邏輯】的意識型態，似乎
會影響〈來自自身 le 邏輯的支持〉。
(a){ 善意的糾正(correction of goodwill) }
「儘管他們有喜歡和不喜歡的食物，我還是
會跟他們說是為他們好，嘗試讓他們吃我晚餐煮
的每一道菜。」「我們會變更家務職責，且變更
表中，他們必須圈起已經完成的義務，並劃掉沒

292

有完成的。」「我搖了早晨鐘，我們在六點半吃
早餐，而鐘聲在六點會響起。你可以在每一個房
間聽到持續五分鐘的鐘聲，因為我不會讓其他人
碰到這個鐘。鐘聲每天都會想起，即便我當天請
假，因為這是早安鈴(morning call)......」「當然，
我會在他們進入到我們的團體之家前告知他
們，首先他們從外面工作回來後一定要先洗澡，
而且要每天洗衣服，因為如果你不做，會有很多
事情要做，所以他們必須這麼做。而後他們需要
吃飯和洗自己的碗盤，接著他們就自由了。我必
須要如此細節地指導他們」。這些陳述顯示他們
了解支持做為一種引導、掌控、指示和限制，改
正他們的錯誤並引導至正確的方向。這些支持性
活動似乎受到【自身的 le 邏輯】和其他概念影
響，照顧服務員盡力嘗試將他們自己的規定運用
在住民上。
(b) { 未直接面對住民的控制方式(control
without facing resident) }
「我會特別針對某一個我覺得最需要的住
民給他稱讚，接著他/她的房間就會變得非常乾
淨。其他人會想要我去檢查他們的房間，因為他
們也想要被稱讚。」該名照顧服務員在面對住民
時，並沒有明確告訴他們她的用意，反而透過稱
讚、討好、威脅和情感，她試圖影響住民以讓她
可以按照她所想的來操縱居民。「我討好他們，
這是最佳的策略。我試圖讓他們獲得某種程度上
的自由，而且透過被討好的方式，他們學基本原
則學得更好，相較於用指出和責罵的方式。」「我
也是，有時我會跟他們說黃色笑話讓他們笑，之
後他們會變得更喜歡我，這樣讓我也比較輕鬆。」
「我告訴他們去回到機構當中，不，他們不想要
這樣，他們已經習慣團體家庭中四個人的生活。」
「......我說話很直接，我讓他們認為當我在旁邊
的時候，他們要小心一點」。這些照顧服務員認
為語言和行為是有效支持的工具，能夠操縱住民
卻又不被其察覺對他們影響的方式。
(2) 其他範疇
(a){ 如同監護人般的言論 (remarks like
guardian) }
「我對他們說話如同他們是我的小孩，但是
我們的督導告訴我這是錯誤的，而且我是在歧視
他們。督導也指導我應該如何稱呼他們，以及當
我和他們說話時我該使用哪一類型的語言方
式。我沒辦法了解而且我會擔心我的說話內容。
我很真誠地將自己投入在這些孩子當中，且真心
地覺得就像是在撫養我自己的孩子。」該名照顧
服務員相信她是盡全力對待他們就像自己的孩
子一樣。「他們相信我，而且覺得我是他們的媽
媽。」「我完全知道這個人在想什麼，這讓我覺
得心情真的很好」。這些照顧服務員認為透過成
為住民的媽媽這樣親密的關係，可以讓支持更為
有效，也讓他們的態度更明確地展現在行為當
中。智能障礙者的特質讓住民顯得年輕許多的事
實，同樣也影響這樣的傾向。
(b) { 情緒優先(emotion first) }
「他真的是很狡猾，我不知道，或許他最近
感到很有壓力或是怎麼樣的，他上禮拜兩次大聲
地小便在地板上，我當時並沒有在值班，但是一
位全職的照顧服務員問他，你是不是想要挑釁？
接著他回答，哼。他們對他感到很頭疼，也不知
道要怎麼跟他處理這件事。」當住民做出意想不
到的行為，或是當他們並沒有按照指示去做時，
照顧服務員有時會提高他們的音量，變得情緒
化，進而顯露負面情緒。「那個人......我討厭他......
我們對人會有喜歡和不喜歡，我覺得對孩子也是
一樣，他們一定也是這樣討論我們」。有時候照
顧服務員會討厭某些住民，且透過他們的行為表
露出他們的情緒。

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(c){作為團體家庭唯一一名工作者的成就感、
滿足和虛榮 (sense of achievement,
complacency and pretension as a single
worker at a group home) }
「嗯，我們在那邊工作已經有一段時間了，
也適應那邊的環境情況，但有些人評論說，如果
你可以處理這邊的事情，那麼你就可以在其它任
何地方工作。」「我會買喜歡的衣服給他們，我
選擇給那些穿起來會好看的人穿，而且他們也喜
歡這樣。」「當(住民們的)媽媽了解到他們的小孩
可以做一些例如擦地板、摺衣服等事情時，真的
非常感動。他們謝謝我們，說我們對他們的孩子
照顧得很好。這些讚美鼓勵我們繼續工作。」這
些照顧服務員透過處理住民問題、教住民其所喜
歡的技能，例如烹飪和縫紉的經驗，以獲得成就
感與虛榮感。住民的改變透過〈來自自身 le 邏輯
的支持〉─包含{善意的糾正)}與{未直接面對住
民的控制方式)}兩個概念─給予照顧服務員對他
的支持方法感到有信心。另外，當處於單一一種
環境中沒有收到第三方像是其他支持性員工的
評價，他們會獲得{作為團體家庭唯一一名工作
者的成就感、滿足和虛榮}，並強化【自身的 le
邏輯】意識和〈來自自身 le 邏輯的支持〉之間的
關係。
(d) { 與其他照顧服務員的摩擦(sense of
friction with other care staff members) }
通常在團體家庭中會和照顧服務員接觸的
其他支持性員工為督導人員，來自後援機構(back
up institution)或為居家服務員(Home Helpers)。在
「支援費制度(assistance benefit supply system)」
制定後，這樣的接觸更為頻繁。「我在和他們相
處上一直都有困難。」「當我開始在這個團體家
庭工作時，這間團體家庭共有十年歷史，住民也
十分有紀律且很好相處，但是在『支援費制度
(assistance benefit supply system)』實行後一年，
他們開始變得被過度溺愛且奢侈地要求買這
個、買那個給他們，因為支援費制度確保他們的
花費和額外協助。而主管告訴我就按照他們所要
求的一切去做，因為這就是現在的運作方式。支
持住民的方式相較過去有了急遽轉變，這讓我們
變得難以處理。主管非常仁慈，而住民不會聽我
們的。當主管在他們旁邊時，他們就像乖孩子一
般。我們這些照顧服務員體驗到共同的問題」。
這些照顧服務員感到他們並沒有被後援機構
(back up institution)的督導人員充分理解。另外，
部分照顧服務員對於他們不在時提供住民協助
的居家服務員感到混雜的情緒，「我通常會單獨
帶 4 位住民出去買東西、四處走一走，現在的居
家服務員只負責一位住民，顯得容易許多。我期
待他們可以再稍微直接一點向他們(住民)說不，
因為他們(住民)已經知道要如何和他們相處，但
是許多居家服務員仍無法做到。」他們(照顧服務
員)對於其他支持者的支持方法─尊重住民的自
我選擇和自我決定─並不滿意，這些照顧服務員
藉由【自身的 le 邏輯】創造團體家庭和住民的形
象，而且他們感到被其他支持參與者排斥，因此
寧願避開這些人。因此，【支持性活動未以個人
中心取向為導向】同時由【自身的 le 邏輯】所塑
造，也同時強化了【自身的 le 邏輯】。
(二) 促進因子
1. 【對於自身提供支持之覺察(awareness of
one’s own support) 】
【對於自身提供支持之覺察】這個核心範
疇建立出來作為促進因子的特徵。照顧服務員帶
著【自身的 le 邏輯】的意識來進行支持性活動，
但其中有部分照顧服務員會反省自己，對於自身
提供的支持性服務以及自己表露的情緒加以覺
察。【對於自身提供支持之覺察】由四個概念組

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成─{對於自身表達之情緒的覺察(awareness of
one’s own expressed emotion) }、{對於自身提供之
支持的反省(reflection on one’s own support) }、
{對於自身帶給住民影響的覺察(awareness of
one’s own influence on resident }以及{使自身提供
之支持的品質朝向進步(toward the improvement
of the quality of one’s own support) }。
(a) { 對於自身表達之情緒的覺察
(awareness of one’s own expressed
emotion) }
「我知道我不該生氣，但是情緒上來，我最
後說出尖銳的話語。」「我當場和住民對質，對
他們話說得滿尖銳的，事情過後我開始後悔，覺
得自己犯了錯」。他們沒辦法控制自己的情緒，
但事後開始後悔他們的尖銳言詞，意識到自己傷
害了住民。
(b) { 對於自身提供之支持的反省
(reflection on one’s own support) }
「我有我自己的想法，但我也覺得或許我應
該讓他們選擇自己想要做的事情。」「我們這些
在團體家庭工作的人......有許多意見，但最後還
是讓住民為自己做選擇比較好......」。這些照顧服
務員覺察到當住民做出自己的決定時，自己不能
夠堅持己見、認為自己非常了解住民。「我和一
位住民談話，但同時我開始思考或許我不應該這
麼做，我試著表現出和善，但我們之間年齡差距
並不大，而且我想要知道她怎麼看待我的意
見」。該名照顧服務員反省並質疑自己的支持性
活動，即便這些活動本意對居民是好的。
(c) { 對於自身帶給住民影響的覺察
(awareness of one’s own influence on
resident }
「自從居家服務員開始協助住民，我們開始
了解到，當我告訴他們不要做特定事情時，他們
在我面前不會做這件事，但是我不確定如果是其
他人在旁邊時是否也會一樣。」該名照顧服務員
開始透過觀察其他支持人員的加入以及住民對
他們的回應，以了解自己對住民的影響力。「我
不想強迫自己加快步調......我也不想要為了方便
而迫使自己告訴他們該做什麼事情。我應該和他
們一起解決，並將那些想法留在腦海中」。該名
照顧服務員覺察到他差點要犯下錯誤，且客觀地
意識到他的影響力。
(d) {使自身提供之支持的品質朝向進步
(toward the improvement of the quality of
one’s own support) }
「制度開始有了變化，由於政府，母機構的
督導人員開始教導我們政策，以及一些在實務工
作上很有幫助的知識......」「我們從觀察其他團
體家庭當中學到許多東西，如果你只是一直待在
自己的世界當中，你沒辦法處理你的工作」。他
們想要獲得制度和政策相關的知識，也了解到和
其他前來他們團體家庭的照顧服務員交換意見
的重要性。「......我覺得我應該要擁有不同嗜好和
跟人聚會以使自己進步」。該名照顧服務員似乎
嚮往自己和他提供的日常支持皆能有所成長。
2. 【以個人為中心之支持方法的特徵 (a sign
of the person centered approach) 】
此核心範疇【以個人為中心之支持方法的特
徵】被建立。照顧服務員承認住民的個體性
(individuality)，尊重他們的意願並據此提供協
助，這個範疇包含{傾聽住民的感受}這個概念。
(a) { 傾聽住民的感受(listening to resident’s
feeling) }
「我們覺得這個很好笑，但如果那是住民喜
歡的話，那這樣也沒關係。」該名照顧服務員沒
有將自己的價值觀加諸住民，且尊重住民的意願
和選擇。「你知道的，有很多人就會有很多想法。」

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這名照顧服務員尊重住民的個體性。「如果他們
可以有好的發展，那他們也應該結婚，如果不可
行，那麼他們不論何時都可以離婚，這也是他們
的自我決定」。這是一名對住民結婚有負面感覺
的照顧服務員，向另一名照顧服務員諮詢時，後
者回應的答案。這位照顧服務員似乎尊重住民的
人權，而不是忽略他們。
(b) { 確認和承認住民的意願(confirming
and recognizing resident’s will) }
「所以，我試著不要強迫他們......我需要長
出自我，否則你沒辦法應付這份工作。」「我們
每個月和督導開一次會議，各團體家庭中的一位
照顧服務員帶著自己單位的意見前往參加會
議......我們一個月聚一次，像這樣的小聚會。」
照顧服務員有時候在支持性活動的過程中，會覺
察到傾聽住民感受的重要性，他們藉由確認住民
意願的重要性，開始反省自己的支持性活動。此
概念是從{傾聽住民的感受}為背景進而產生，並
強化核心範疇【對於自身提供支持之覺察】。
(三) 干擾因子和促進因子之間關係
上述討論顯示許多照顧服務員在提供住民
支持時，會產生他們個人的價值觀【自身的 le 邏
輯】。另一方面，受到他人陳述內容的影響，他
們開始有【對於自身提供支持之覺察】。這兩個
因素似乎相互作用。
三、結論
本研究旨在闡明團體家庭中照顧服務員提
供的個人中心之支持，當中存在的促進因子和干
擾因子，並用 GTA 作為方法論進行資料分析。
(一) 促進因子和干擾因子
1. 干擾因子
許多照顧服務員認為一個嚮往的團體家庭
是一個由住民和照顧服務員組成一家人的家
庭，且觀察發現，他們傾向於強調團體生活的重
要性更勝於個體生活。此外，盡家務職責的能力
在獨立生活中被過度強調，且住民被期待要聽令
於支持者或身邊的人，並依此命令做出行動。照
顧服務員以自身經驗養成的價值觀作為基礎，進
而發展出其個別的支持方式。另外，對於智能障
礙者的偏見似乎影響這她們的觀念意識。前述照
顧服務員的觀念意識，被歸類至【自身的 le 邏輯】
的核心範疇中，【自身的 le 邏輯】是照顧服務員
個人的價值觀。
【自身的 le 邏輯】影響照顧服務員的支持方
式，他們認為引導、控制、指導和限制即是支持
性活動，且傾向於以討好、讚美、情感和將自己
呈現一種威脅與令人恐懼的形象來與住民相
處。當他們的指令並沒有被如期達成時，他們會
提高音量且變得情緒化。他們嘗試透過稱呼他們
為我的孩子，並表現得如同其家長一般以拉近和
住民的關係。
受到【自身的 le 邏輯】意識的影響，在執行
支持性活動的過程中，當照顧服務員對於他們單
獨在所屬團體家庭中以自己方式執行而感到自
豪時，從中可累積成就感、滿足和虛榮感。因此，
照顧服務員【自身的 le 邏輯】特質的明確形象被
建立起來，而照顧服務員對於不同價值觀和支持
方法的督導及其他支持者所產生的逃避感覺，又
進一步增強其【自身的 le 邏輯】。
以個人為中心之支持的干擾因子起因於團
體家庭中的支持性服務是由單一位照顧服務員
執行，很少有機會可以和其他支持者進行客觀的
檢視和比較，且照顧服務員的訓練較不充足。
2. 促進因子
在執行支持性活動的過程中，有些照顧服務
員開始覺察到自己因為無法控制情緒，所以說話
尖銳進而傷害到住民。因此，她們開始反省並質
疑自己的支持性活動，了解到自己對於住民的影

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響。這樣的經驗被歸類至【對於自身提供支持之
覺察】的核心範疇中。藉由這個範疇，部分照顧
服務員開始意識到獲得相關知識和照顧服務員
支持方法的重要性。
【對於自身提供支持之覺察】讓照顧服務員
了解尊重住民意願的重要性，而這樣的認知引領
他們開展以個人為中心之支持的可能性。
3. 促進因子和干擾因子間相互作用
顯然地，在一間團體家庭當中的單一一位照
顧服務員很少有機會可以將他/她的支持性活動
和其他人比較，使他/她難以對於自己的支持有所
檢討。但是透過團體討論，他/她有機會可以聽到
其他照顧服務員的看法，且似乎受到各種不同價
值觀影響。照顧服務員傾向於塑造他們個人的價
值觀，但和其他擁有【對於自身提供支持之覺察】
和【以個人為中心之支持方法的特徵】的照顧
服務員有所連結，可能會帶領他們獲得【對於自
身提供支持之覺察】。因此這兩個因子似乎是彼
此相互作用。
(二) 朝向個人中心取向作為目的
透過獲得機會檢討自己每天執行的支持性
活動【對於自身提供支持之覺察】，照顧服務員
從原先自己與干擾因子相關的價值觀中展開更
多成長。藉由【以個人為中心之支持方法的特徵】
的概念，照顧服務者有機會開始覺察到個人中心
的支持方法。
本研究中資料蒐集是來自照顧服務員訓練
工作坊的團體討論中，照顧服務員被期待可在一
個接納的環境中，對於他們現在提供的支持性活
動交換意見，並開始思考自己的支持方式以有所
進步，最後據此改變其行為。從現在開始，期待
這種型態的照顧服務員工作坊能夠有所發展，使
照顧服務員獲得相當的充權。

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[原文發表於本專書的其中一章：Andrew Power, Janet E. Lord & Allison de Franco, Active Citizenship
& Disability: Implementing the Personalization of Support (Cambridge: Cambridge University Press,
2013)] 翻譯：江尚書前社會住宅推動聯盟政策組主任
在國際和區域性的法律及政策脈絡中提供身心障礙者支持
章節摘要
第 2 章探討國際性及區域性 (歐洲) 的法律與政策架構，可在國內層級具體應用於提供以權利為
本的身心障礙者支持措施。本章首先概述與障礙者支持最為相關的國際性和區域性法律與政策。本章
的第二部分檢視法律與政策的發展，並特別注重個別化、居住安排選擇及社區生活等重點領域。第三
部分則分析實際提供障礙者支持的法律、政策與操作流程，包括公部門的採購與競爭，及消費者的投
訴機制。本章的總結揭示國際性及區域性障礙者法律與政策的意涵，確保障礙者支持措施的實施能確
實符合人權原則，並朝向促進障礙者的完整公民權而邁進。
2.1 簡介
聯合國大會 (United Nations General Assembly) 在 2006 年通過身心障礙者權利公約 (簡稱 CRPD
或本公約)11
，標誌出在聯合國體系中努力多年的一場勝利，障礙者權利被放上國際議程，障礙者議題
也被整合進更廣闊的人權和國際發展架構。同時，本公約的通過也成為國家及區域層級身心障礙法律
與政策改革的推動力12
。本公約是第一個被區域性整合組織──歐洲共同體 (European Community)──
所採用的國際人權公約，這對歐盟各成員國及歐盟機構內的身心障礙者權利是一大鼓舞。2010 年，《歐
盟身心障礙者策略 2010-2020》13
通過，使障礙者有能力完整實現其人權，並確保本公約在歐盟各國的

* BlueLaw 國際律師事務所資深合作夥伴；哈佛大學法學院身心障礙者計畫副研究員；馬里蘭大學法學院兼職教
授。
** BlueLaw 國際律師事務所，障礙者與人權計畫法律助理。
作者希望感謝 Kelly Bunch, Esq.與 Katy Carroll 協助準備本章節的草稿。
11
聯合國身心障礙者權利公約 (UN Convention on the Rights of Persons with Disabilities), G.A. Res. 61/106, U.N.
Doc. A/61/611 (Dec 13, 2006), opened for signature Mar. 30, 2007, 46 I.L.M. 433 [本文接下來簡稱為公約或 CRPD]。
提供做為額外監督機制的任擇議定書 (Optional Protocol) 也在同一時間通過。身心障礙者權利公約任擇議定書
(Optional Protocol to the Convention on the Rights of Persons with Disabilities), opened for signature Mar. 30, 2007,
46 I.L.M. 433 [本文接下來簡稱為任擇議定書]。身障公約的文字與歷次草案版本、決議、更新版的簽署者與締約
國，發布在聯合國身障者賦能網 (United Nations Enable)，
http://www.un.org/esa/socdev/enable/rights/convtexte.htm。
12
一般見 Janet E. Lord and Michael A. Stein, The Domestic Incorporation of Human Rights Law and the United
Nations Convention on the Rights of Persons with Disabilities, 83 U. WASH. L. REV. 449 (2008).
13
EUROPEAN UNION, EUROPEAN DISABILITY STRATEGY 2010-2020: ARENEWED COMMITMENT TO A BARRIER-FREE

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施行具有一致性。這些進展進一步受到歐洲理事會 (Council of Europe) 的強化，本公約已在歐洲理事
會的區域性人權系統中，運用於指導人權法律文件的詮釋14
。歐洲理事會所通過的 2006-2015 年《身
心障礙者行動方案》，也象徵歐盟努力將障礙者權利納入人權議程的核心部分15
。
國際身心障礙者標準的浮現
國際上對身心障礙者權利的關心始於二戰後初期所浮現的現代國際人權，相對於特定議題或聚焦
特定族群的人權，此概念是普遍性人權保護的起源。同一時期，障礙者法律與政策也逐漸成形，但其
架構較為窄化，也只關注二戰期間傷者的復原。
隨著《聯合國憲章》(UN Charter) 16
人權條款的通過，透過國際公約來保護人權的架構逐漸成形，
並開始落實於國家層級。人權原則及義務在國際人權法案中被加以闡述，構成《世界人權宣言》17
、《公
民及政治權利國際公約》18
、《經濟社會文化權利國際公約》19
，適用於全體人類。隨著時間的推移，
關於特定人群或問題的專門條約被發展出來，如《消除一切形式種族歧視國際公約》20
、《禁止酷刑公
約》等21
。障礙者身而為人當然也適用這些公約，但它們並沒有明確闡釋障礙者的權利。儘管如此，
這些公約構成國際身心障礙者法律及政策的基礎。雖然障礙者不見於這些早期的人權文件中，因為那
個時期的明顯推力不是平等享有人權，或社會融合及參與，而是較窄化為身體復健、職業培訓及社會
救助22
。如同特瑞莎德格納 (Theresia Degener) 教授所強調的，障礙者在人權法律中「僅與社會保障

EUROPE (2010), available at http://eur-lex.europa.eu/LexUriServ/LexUriServ.do?uri=COM:2010:0636:FIN:EN:PDF
14
想了解更多歐盟對身障公約的觀點，可參見 Oddný Mjöll Arnardóttir & Gerard Quinn eds., Future Prospects for
the United Nations Convention on the Rights of Persons with Disabilities, in THE UN CONVENTION ON THE RIGHTS OF
PERSON WITH DISABILITIES: EUROPEAN AND SCANDINAVIAN PERSPECTIVES (2009)。也可參考 Anna Lawson, The UN
Convention on the Rights of Persons with Disabilities and European Disability Law: A Catalyst for Cohesion? in
Arnardóttir & Quinn, 出處同上，103 頁。若要了解在身障公約生效前的國際性與比較性的法律觀點，可參考
Theresia Degener & Gerard Quinn, A Survey of International, Comparative and Regional Disability Law Reform, in
DISABILITY RIGHTS LAW AND POLICY: INTERNATIONAL AND NATIONAL PERSPECTIVES 3 (Mary Lou Breslin & Sylvia Yee
eds. 2002)。
15
COUNCIL OF EUROPE, COUNCIL OF EUROPE DISABILITY ACTION PLAN 2006‐2015 (2006), available at
http://www.coe.int/t/e/social_cohesion/soc%2Dsp/Rec_2006_5%20Disability%20Action%20Plan.pdf.
16
U.N. CHARTER, June 26, 1945, 59 Stat. 1031, T.S. 993, 3 Bevans 1153, entered into force Oct. 24, 1945.
17
Universal Declaration of Human Rights, G.A. res. 217A (III), U.N. Doc A/810 at 71 (1948) [下文稱 UDHR].
18
International Covenant on Civil and Political Rights, G.A. res. 2200A (XXI), 21 U.N. GAOR Supp. (No. 16) at 52,
U.N. Doc. A/6316 (1966), 999 U.N.T.S. 171, entered into force Mar. 23, 1976 [下文稱 ICCPR].
19
International Covenant on Economic, Social and Cultural Rights, G.A. res. 2200A (XXI), 21 U.N. GAOR Supp. (No. 16)
at 49, U.N. Doc. A/6316 (1966), 993 U.N.T.S. 3, entered into force Jan. 3, 1976 [下文稱 ICESCR].
20
International Convention on the Elimination of All Forms of Racial Discrimination, G.A. Res. 2106 (XX), U.N. GAOR,
Supp. No. 14, at 47, U.N. Doc. A/6014 (1966).
21
Convention against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment, G.A. Res. 39/46, U.N.
GAOR, 39th Sess., Annex, Supp. No. 51 at 197, U.N. Doc. A/39/51 (1984).
22
世界人權宣言 (UDHR) 只有一條是有關身心障礙者。宣言第 25 條指出：“[E]veryone has the right to a standard

299

及預防性健康政策產生連結」23
，而不被視為全面性的人權議題來對待。
在 1970 年代，聯合國將注意力轉向起草針對身心障礙者的無約束力標準。這些早期的努力包含
通過《心智障礙者權利宣言》24
及《身心障礙者人權宣言》25
，也是最早特別針對障礙者的國際性條文。
雖然這些宣言的通過代表障礙者進入國際議程的重要發展，但卻不具約束力，難以形塑國家的法律與
政策，也無法監督或落實一些措施來促成各國行動。此外，它們無法完全反映既有的人權原則，有些
案例甚至還背道而馳，這將在下個段落中指出26
。這些早期的政策回應傾向於強調被動與依賴。然而
它們卻不經意地造成分化與隔離，不論在教育、就業或其它領域，它們都強化障礙者的孤立狀態。很
明顯地，它們並沒有朝向提供支持來使障礙者過著平等的公民生活27
。
聯合國大會將 1981 年明定為國際身心障礙者年28
，於 1982 年通過不具約束力的《世界行動綱領》
29
，藉此鼓勵國家層級的方案，來達成障礙者的平等權利30
，成為障礙者權利向前推進的強大動力。
身心障礙者十年 (1983-1992) 31
，在聯合國大會於 1994 年 3 月 4 日通《身心障礙者機會均等標準

of living adequate for the health and well‐being of himself and his family, … and the right to security in the event of
unemployment, sickness, disability, widowhood, old age or other lack of livelihood in circumstances beyond his
control.” 請見 UDHR，來源同註 7。
23
Theresia Degener, Disabled Persons and Human Rights: The Legal Framework, in HUMAN RIGHTS AND DISABLED PERSONS
94 (Theresia Degener & Yolan Koster‐Dreese, eds., 1995).
24
Declaration on the Rights of Mentally Retarded Persons, G.A. res. 2856 (XXVI), 26 U.N. GAOR Supp. (No. 29) at
93, U.N. Doc. A/8429 (1971). [下文稱 1971 Declaration], art. 1; Prembl. 5.
25
Declaration on the Rights of Disabled Persons, G.A. res. 3447 (XXX), 30 U.N. GAOR Supp. (No. 34) at 88, U.N. Doc.
A/10034 (1975).
26
一般見 National Council on Disability, Understanding the Role of an International Convention on the Human Rights
of People with Disabilities (Principal Author, Janet E. Lord, Washington D.C., 2002) [下文稱 NCD Report].
27
參見 Gerard Quinn, The European Social Charter and EU Anti‐Discrimination Law in the Field of Disability: Two
Gravitational Fields with One Common Purpose in SOCIAL RIGHTS IN EUROPE 279 (Grainne de Bruca and Bruno de Witte,
eds, 2005),
28
International Year of Disabled Persons, G.A. Res. 36/77, at 176, U.N. GAOR, 36th Sess., Supp. No. 77, U.N. Doc.
A/RES/36/77 (1981).
29
世界行動綱領 (The World Programme) 是強化身心障礙預防、康復及均等機會的全球性策略。其三個章節分
析了與身心障礙有關的原則、概念及定義；概述身心障礙者在世界各地的情況；並訂立在國家、區域及國際層
級的行動建議。其目標是要推動有效的措施來預防身心障礙、復原並實現障礙者「完全參與」社會生活與發展
的目標，以及「平等」的目標。世界行動綱領在身障公約、其一般性原則及所聲稱目標的理解觀點中，是一個
混合的工具，結合更權利導向的預防與復原目標，儘管此目標尚未完整。參考 Implementation of the World
Programme of Action Concerning Disabled Persons, G.A. Res. 37/53, at 186-87, para. 11, U.N. GAOR, 37th Sess.,
Supp. No. 53, U.N. Doc. A/RES/37/53 (Dec. 3, 1982)[下文稱 World Programme of Action 1982].
30
參考 World Programme of Action 1982, at paras. 87-90 (特別是成員國應盡快啟動國家長期方案來達到世界行動
綱領的目標；這個綱領應成為國家整體社會經濟發展政策的一部份)。
31
參考 Decade of Disabled Persons, GA Res. 48/96, U.N. Doc. A/RES/48/96 (Mar. 4, 1993), which annexed thereto
(resolution 48/96 annex, 20 December 1993), available at
http://www1.umn.edu/humanrts/instree/disabilitystandards.html.

300

規則》後達到高潮32
。這個標準規則不具約束力，由 22 條規則組成，目的在闡述世界行動綱領的訊息，
提供美國、聯合國及其它國際組織進行科技與經濟合作的基礎。標準規則確認其目標為「確保女孩、
男孩、女性及男性的身心障礙者，身為社會的一份子，將能與其他人一樣行使相同的權利及義務」33
。
並且指出，確實存在著「一些阻礙使得障礙者無法行使他們的權利及自由，並使他們難以完全參與社
會活動」，「國家必須負起責任、採取行動，移除這些障礙」；該規則也指出身心障礙者與相關組織在
移除這些阻礙上所扮演的角色34
。本段引用「障礙者的機會均等」的核心概念，來指陳標準規則的目
標及宗旨，這也被認為是「全世界共同努力動員人力資源所達成的重要貢獻」35
。
世界行動綱領及標準規則強調障礙者有權與其他公民一樣享有均等機會，也共享因經濟與社會發
展而改善的生活水準。然而，它們對身心障礙者的看法並沒有遵循主要人權原則的核心理念，特別是
不歧視、參與、包容、自主等一致的人權取向。
上個世紀末，在障礙者及國際人權法律的領域中，有一些共識開始出現；過去在障礙者的脈絡中，
國際人權架構欠缺幾個基本面向36
。在過去，缺乏相關法律可全面性或針對性地專注處理障礙者的人
權阻礙，許多政府也還未意識到它們的立法義務37
。值得注意的是，聯合國人權事務高級專員辦事處
發布了一份由杰拉德奎因 (Gerard Quinn) 與特瑞莎德格納 (Theresia Degener) 教授著作的關鍵研
究，指出現在的聯合國人權公約監督組織僅輕度處理障礙者遭遇的例行人權侵犯38
。
障礙者專屬人權公約的發展
2001 年，聯合國在南非德班 (Durban) 舉辦反種族主義世界大會，並將障礙者納為行動平台的一
部份後，墨西哥發起了一項倡議，欲針對障礙者的人權，發展出具法律約束力的公約。在當年的聯合
國大會中，墨西哥提議成立一專門委員會，專責於詳細闡述「廣泛與整合性的國際公約，以推廣及保
護障礙者的權利與尊嚴，並依據在社會發展、人權與非歧視等領域中的相關工作，發展出的全面的觀
點來推動」39
。這個提案被接受後，專門委員會成立，並在 2002 年首次召開。此後該委員會共計在聯

32
參考 Standard Rules on the Equalization of Opportunities for Persons with Disabilities, A/RES/48/96, 85th Plenary
Meeting 20 December 1993 [下文稱 Standard Rules]。
33
同註 15。.
34
同上。
35
同上。
36
特別參考 GERARD QUINN & THERESIA DEGENER, HUMAN RIGHTS AND DISABILITY: THE CURRENT USE AND FUTURE POTENTIAL OF
UNITED NATIONS HUMAN RIGHTS INSTRUMENTS IN THE CONTEXT OF DISABILITY 1 (2002), available at
http://www.nhri.net/pdf/disability.pdf. 有兩個與關於身心障礙規範和標準的國際專家討論會，於 1998 與 1999 於
柏克萊及香港分別舉行，並認真思考障礙者權利是否需要具法律約束力的公約。
37
一般見 NCD Report，同註 16。
38
一般見 Quinn and Degener，同註 26。
39
參見Comprehensive and Integral International Convention to Promote and Protect the Rights and Dignity of Persons
with Disabilities, G.A. Res. 56/168, U.N GAOR, 56th Sess., Supp. No. 168, U.N. Doc. A/RES/56/168 (Dec. 19,
2001)。有關聯合國決定是否要推動身心障礙者人權公約，其背後政治過程的詳細描述，記載於National Council
on Disability, Newsroom, UN Disability Convention--Topics at a Glance: History of the Process, available at http://

301

合國的紐約總部召開八次會議，並在 2006 年 8 月正式通過最終文本40
。隨後，這個版本於 2006 年 12
月 13 日提交至聯合國大會並獲全體大會通過。
身心障礙者權利公約的文本由 25 段序言及 50 條條文構成41
。起草者的目的不是為了創造「新的」
權利，相反地，其目標是明確說明專門適用於障礙者的相關人權。換句話說，身障公約採納現有的人
權義務，並明確指出它們與障礙者生活間的關係。身障公約的結構包含介紹性的條文，目的概述 (第
一條) 及關鍵定義 (第二條)，以及通用性 (跨領域) 的應用，適用於整個公約 (第三至九條)。
締約國的一般性義務，於公約第四條明確指出，要求締約國採取措施，確保並促進障礙者的一切
人權和基本自由能夠完全實現，不受任何形式的歧視。關於經濟、社會和文化權利，締約國有義務採
取措施，在現有資源的最大程度上逐步落實這些權利。公約的第四條要求締約國：(i) 採取立法、行
政及其它措施來實現公約的權利；(ii) 廢除或修訂歧視障礙者的現行法律、規章、習慣及作法；(iii) 採
取包容的取向，來保護和促進障礙者在所有政策與方案中的權利。最關鍵的是為了支持障礙者，第四
條要求締約國禁止那些違反身障公約義務的措施，並確保公部門尊重障礙者的權利。同時，締約國必
須採取措施，廢除個人、組織或企業對障礙者的歧視。此外，政府必須從事相關研究，發展出障礙者
易用的商品、服務和技術，並鼓勵更多人進行這類研究；提供障礙者有關輔助技術的資訊；為相關領
域的工作者提供公約權利的專業人員訓練；諮詢障礙者，讓他們參與法律及政策的發展與落實，以及
有關障礙者的決策過程。最後的這項規定是身障公約的核心，要求公約的落實須由障礙者及其代表組
織的充分參與。
繼上述適用於整份公約的條文，身障公約接著闡述了涵蓋公民、政治、經濟、社會與文化的特定
實質權利 (第 10 至 30 條)。最後，身障公約建立了監督與執行的系統 (第 31 至 40 條)，包括最後管
理身障公約運作的相關條文 (第 41 至 50 條)。顯然為了促成障礙者權利的倡議，一些條文要求須與權
利關係人積極協商，並將參與的規範應用至各實施層面，包括要求「參與」可以落實在所有法律、政
策及決定程序 (身障公約第 4 條第 3 款)。身心障礙者權利委員會—身障公約的監督機構—透過監督義

www.ncd.gov/newsroom/publications/2003/history_process.htm。大會決議成立委員會來考慮提出較詳細的身心障
礙者人權公約，「專門」委員會因此成立，並在2002年7月第一次召開。「專門」一詞僅是要指出為了特定目的、
限時成立的機構，這是相對於在聯合國大會下無限期運作的機構。
40
要了解更多身障公約的協商過程，可參考 Rosemary Kayess & Phillip French, Out of Darkness into Light?
Introducing the Convention on the Rights of Persons with Disabilities, 8 HUM. RTS. L. REV. 1 at 15 (2008); Janet E.
Lord, Mirror, Mirror on the Wall: Voice Accountability and NGOs in Human Rights Standard Setting, 5 SETON HALL J.
DIPL. & INT’L REL. 93 (2004).
41
要總覽身障公約，一般見 Michael Ashley Stein & Janet E. Lord, Future Prospects for the United Nations
Convention on the Rights of Persons with Disabilities, in THE UN CONVENTION ON THE RIGHTS OF PERSON WITH
DISABILITIES: EUROPEAN AND SCANDINAVIAN PERSPECTIVES (Oddný Mjöll Arnardóttir & Gerard Quinn eds. 2008);
Michael A. Stein & Janet E. Lord, The United Nations Convention on the Rights of Persons with Disabilities: Process,
Substance, and Prospects in INTERNATIONAL HUMAN RIGHTS LAW IN A GLOBAL CONTEXT 495 (Felipe Gomez Isa and
Koen de Feyter, eds., 2008).

302

務性報告及發布相關建議，來監察締約國的執行情況。身障公約其中一份由 18 條條文構成的任擇議
定書 (Optional Protocol)42
，授權委員會可在締約國被指控為違反公約時進行審查。其目的是讓締約國
能選擇進入個人與團體的溝通及調查程序，並讓所有程序都能受到委員會的監督。
身障公約的國際與國內法律地位
在撰寫本文時，已有 90 個國家認可身障公約43
，56 個國家認可任擇議定書44
。歐盟的 16 個國家
及歐洲理事會的 23 個國家均已認可身障公約45
。在歐洲共同體條約 (EC Treaty) 之下，身障公約已由
歐洲共同體 (European Community) 簽署並達成協議。身障公約要求區域整合組織宣告公約所涵蓋的
領域具有效力，因此，針對身障公約結論的歐洲共同體 2010/48/EC 號理事會決議，制定出相關法規，
明定歐洲共同體的行動範圍46
。
國際人權標準被設計成要在國內層級可以施行47
。作為一般事項，公約批准國 (以及區域整合組
織，如歐盟) 必須讓公約所訂的義務具有法律效力，因此身障公約也制定出在國內落實的一般性參考
標準48
。納入國內法律架構的過程因國家而異49
。在某些國家，包括如：克羅埃西亞、匈牙利、斯洛維
尼亞及西班牙，人權公約的規定，包括身障公約在內，在國家的法律架構中具有直接的法律效力，因
此理論上可直接適用，包括在法庭上都是如此50
。相對地，在其它國家，包括英國、澳大利亞、比利
時，國際與國家的法律制度被視為分別獨立的法律範疇。因此在這些國家中，國際人權公約無法在國

42
Optional Protocol，同註 1。
43
UNENABLE, CONVENTION AND OPTIONAL PROTOCOL SIGNATURES, COUNTRIES AND REGIONAL INTEGRATION ORGANIZATIONS,
http://www.un.org/disabilities/countries.asp?navid=12&pid=166 (last visited August 21, 2010)
44
同上。
45
同上。
46
該決議所設定的職權範圍包含不歧視、就業、可及性、國際合作、統計與資料蒐集與監督。歐盟委員會的職
權範圍不斷變動，因此額外的職權可能隨著時間而出現。Council Decision 2010/48/EC。
47
THOMAS BUERGENTHAL, DINAH SHELTON, AND DAVID STEWART, INTERNATIONAL HUMAN RIGHTS 347 (2d ed., 2002).
48
為了讓公約具有國內法的效力，必須依靠政府的行動，公約標準才能夠整合進國內法律。此種法律系統在本
質上被認為是「雙軌」體系。相較之下，單軌體系的國家法律系統被認為不需要分別的、國內層級的行動，就
能納入國際公約。
49
已有廣泛的文獻關於將人權標準整合入該國體系及其相關過程。參見如：Antonio Cassesse, Modern
Constitutions and International Law, 192 HAGUE RECUEIL DES COURS 331 (1985); THE EFFECTS OF TREATIES IN
DOMESTIC LAW (F.G. Jacobs and S. Roberts, eds., 1987); Ignaz Seidl-Hohenveldern, Transformation or Adoption of
International Law Into Municipal Law, 12 INT’L & COMP. L.Q. 88 (1963); Luzius Wildhaber & Stephan Breitenmoser,
The Relationship between Customary International Law and Municipal Law in Western European Countries, 48
Z.A.O.R.V. 163 (1988); Rosalyn Higgins, United Kingdom, in THE EFFECTS OF TREATIES IN DOMESTIC LAW 123,
124-25 (F.G. Jacobs & S. Roberts, eds., 1987).
50
要了解更細緻的分析，參見Anthony Aust, Modern Treaty Law and Practice (Cambridge University Press, 2006), pp.
146 and 150。針對將身障公約整合進國內法律的相關討論，參見 Office of the High Commissioner for Human Rights,
Thematic Study by the Office of the United Nations High Commissioner for Human Rights on enhancing awareness and
understanding of the Convention on the Rights of Persons with Disabilities, UN Doc. A/HRC/10/48, 26 Jan. 2009.

303

內自動產生法律效力，而必須透過立法來將身障公約納入國內法律規範。
若要談論身障公約成為國內法律架構的這個議題，愛爾蘭是一個有趣的案例，她於 2007 年 3 月
30 日便簽署了身障公約51
，但考量到國內層級的適用性而尚未批准52
。愛爾蘭為使身障公約生效所做
的努力，與國內身心障礙者法律的改革並行，確保能完全符合身障公約的條文後才在國內生效53
。同
樣地，美國也採用極為嚴格的門檻來批准身障公約，在美國總統提交公約至參議院徵詢其意見與同意
前，國務院進行了長期且深入的跨部會審查過程來評估是否能符合公約的要求。其結果是，美國在所
有工業化國家中擁有最差的批准紀錄54
，這一方面也是因為美國通常採取本位主義來面對國際公約。
下個部分將專注討論從國際和歐洲身心障礙者法律中所浮現的指導原則，這也與本研究的三個重
點領域特別有關。
2.2 國際與區域性障礙者法律與政策中的指導原則
一般性原則 (general principles)，是使障礙者的支持措施逐步發展，並推進障礙者的包容性公民
權的重要工具，它鼓舞了國際性和區域性的障礙者法律與政策架構。身障公約是在國際障礙者法律中
思考一般性原則的出發點，特別是第三條 (一般性原則) 中的相關規範。歐洲的區域性法規也同樣指
引了障礙者支持措施的設計與提供方式，也明訂各國障礙者法律及政策所應呈現的原則。本研究的三
個核心關注領域──個別化、居住安排選擇及社區生活，都在身障公約中受到強而有力地確認。這三
個領域共同定義了身心障礙政策的新典範，使身心障礙公民可以獨立生活、擁有選擇，也能掌控那些
提供給他們的支持，來達到完全的社會及經濟參與。下個部分將概述這些原則，以及它們如何適用於
個別化、居住安排選擇及社區生活，也會思考如何將這些原則應用到提供障礙者支持的過程。
一般性原則通常在國際公約中扮演重要角色，在身障公約中也是如此。公約第三條指出的一般性
原則，包括尊重個人的尊嚴、自主與獨立；尊重差異，接受障礙者是人類多樣性的一部份；不歧視；
機會均等；完整而有意義的參與；可及性；性別平等；尊重兒童的權利，並支持其不斷發展的能力55
。

51
身障公約締約成員的更新名單，發布於聯合國身障者賦能網站 (United Nations Enable)，同註 1。
52
Ellinoir Flynee, Ireland’s Compliance with the Convention on the Rights of Persons with Disabilities: Towards a
Rights-Based Approach for Legal Reform?, 31 DUBLIN U. L. J. 357 (2009); Gerard Quinn, Centre for Disability Law
and Policy at the NUI Galway School of Law, The United Nations Convention on the Rights of Persons with
Disabilities as an Engine of Domestic Law Reform, Presentation given to Conference of States Parties to the
Convention on the Rights of Persons with Disabilities (Oct. 31, 2008), available at
http://www.un.org/disabilities/images/Message%20G%20Quinn%20COP.doc.
53
「心智能力法案的生效被認為是促使愛爾蘭批准身障公約的改革」。Flynee，同註42，357頁.
54
美國僅批准 26 個國際人權公約中的 3 個。要知道更多有關美國批准人權公約的政策及特別針對身障公約的政
策，參見 Janet E. Lord & Michael Ashley Stein, Ratify the UN Disability Treaty, FOREIGN POLICY IN FOCUS (July 9, 2009),
available at http://www.fpif.org/fpiftxt/6247。也可參考 Janet E. Lord & Michael Ashley Stein, The Law and Politics of
US Participation in the UN Convention on the Rights of Persons with Disabilities in EXPLAINING THE SILENCE: HUMAN RIGHTS
IN THE UNITED STATES (Shareen Hertel & Kathryn Libal eds., 2011).
55
參見身障公約，同註 1，第 3 (a), (b), (c), (d), (e), (f), (g), (h) 條。

304

這些一般性原則要應用在國家障礙者法律的起草工作，制定國家層級的障礙者政策，並應貫徹於決
策、監督及落實的過程。納入一般性原則的相關條文是一項創新，有助於引導公約內容要如何解釋56
。
列舉於第三條的一般性原則牢牢呼應身障公約的人權內涵，它區分出身障公約與其它針對障礙者
的法規，而且值得一提的是，它讓身障公約獨一無二，因為所有其它核心的人權規範並沒有特別闡述
一般性原則57
。由於其定位是使一般性與跨領域的條文均可適用，起草者定義此基本原則必須導引身
障公約所有條文的解釋與應用。值得注意的是，身障公約提出一架構，要求障礙者的支持措施要能反
映及促進自主、包容、參與等核心原則，並使人類獨立性及完整公民權的目標可確保達成。
在歐洲，相關障礙者法律所設下的原則，大致與身障公約呼應。歐洲執行委員會 (European
Commission) 首先對聯合國 1993 年綠皮書中有關社會政策的標準規則提出解釋，認為「社會隔離，
即使有足夠的收入保障和特殊規定，仍是違背人類尊嚴，也侵蝕社會團結與社區士氣」58
。杰拉德奎
因 (Gerard Quinn) 強調這種轉變的意義，並指出「金錢本身不是充分的答案，除非能緊扣基於權利
(rights-based) 的改革議程」；而且即使擴大資助金額，但若沒有基於權利原則的參與、包容與可及性，
是無法被接受的做法。1996 年，歐洲執行委員會在《障礙者的均等機會──新的社區障礙者策略》59
為
障礙者制定了均等機會 (equal opportunities) 的清晰願景。歐洲障礙者策略在 2010 年通過，進一步為
促進障礙者的權利提供推動力，並認為：
仍有許多阻礙，阻止障礙者充分行使其基本權利──包括他們集體的公民權利──並限制他們與
其他人一樣參與社會的平等基礎。這些權利包括自由移動、選擇在哪裡及如何生活，並充分接
觸文化、娛樂及體育活動60
。
歐洲理事會 (Council of Europe) 也參與了障礙者議題，早期是受到二戰期間大量身心障礙人口的
影響。早期的行動專注於身體復健，類似歐洲各國及美國國內狹隘的障礙者架構。理事會第一個明確
的障礙者政策是 1992 年的 R(92)建議，緊接在巴黎舉行的部長級會議 (Ministerial Conference) 之後生
效61
。歐洲部長級會議第二次理事會 2003 年在馬拉加 (Malaga) 舉行，促成馬拉加政治宣言 (Malaga
Political Declaration)，指出其主要目的是「提高障礙者及其家庭的生活品質，強調他們融入和充分參

56
身障公約是第一個列舉一般性原則的國際人權公約。更多有關人權公約中一般性原則的重要角色，參見 Lord
& Stein, The Domestic Incorporation of Human Rights Law and the United Nations Convention on the Rights of Persons
with Disabilities, 83 U. WASH. L. REV. 449 (2008).
57
須注意，儘管某些公約沒有一般性原則的特定條文，公約委員會也會制定一般性原則來引導人權公約的解釋。
例如兒童權利委員會提出四個主要的原則來引導兒童權利公約的解釋。包含：第 2 條 (不歧視)；第 3(1) 條 (兒
童的最大利益)；第 6 條 (生命權及最大限度的生存與發展)；第 12 條 (尊重兒童的觀點及參與)。Convention on the
Rights of the Child, G.A. Res. 44/25, Annex, 44 U.N. GAOR Supp. (No. 49) at 167, U.N. Doc. A/44/49 (1989), entered
into force Sept. 2, 1990.
58
Green Paper on European Social Policy – Options for the Union, Brussels, COM (93), November 1993, 551 at 48.
59
Communication of the Commission on Equality of Opportunity for People with Disabilities – a New European
Community Disability Strategy, Brussels, COM (96) 406, final, 30.07.1996.
60
European Disability Strategy, 同註 3，第 5 頁，段落 2.1.2。
61
Council of Europe, Recommendation R (1992), A Coherent Policy for the Rehabilitation of People with Disabilities,
available at http://www.handicapincifre.it/allegati/RECOMMENDATION_R%2892%296.htm.

305

與社會，因為可參與和可接近的社會將造福全體人類62
。顯然，馬拉加宣言擁抱的取向是「在反歧視
及人權的架構中，讓障礙者的機會達到主流水準，並貫徹於所有政策領域。」63
確保障礙者的支持措施能夠落實並符合歐洲人權標準，是歐洲理事會在社會權利領域的任務。
1961 年最初的歐洲社會憲章 (European Social Charter)64
，反映出那個年代面對障礙者最主流的康復模
式65
：
第 15 條──身心障礙者接受職業訓練、復健和社會重新安置的權利。
為了確保身心障礙者能獲得有效的職業訓練、康復和安置，各締約國承諾：
1. 要採取適當措施，提供訓練設施，包括必要時設置公立或私營的專門機構；
2. 要採取適當措施讓障礙者就業，如專門配對服務，庇護性就業設施，及鼓勵雇主聘
雇的措施。
近期修訂的歐洲社會憲章66
(第 15 條) 則出現截然不同的轉向，反映出朝向障礙者的社會模式及
權利為本的取向，確保障礙者能「獨立、社會融合及參與社區生活。」 67
值得注意的是憲章第 15 條
修訂為「障礙者獨立、社會融合及參與社區生活」，內容比 1961 年以前更全面也更以權利為本。
儘管「歐洲保障人權和基本自由公約」68
並沒有明確禁止歧視障礙者，然而，歐洲法院將不歧視
障礙者應用在一系列的判例中，至近期，更擁抱身障公約的原則做為其詮釋視角69
。歐盟的相關文件
也推動不歧視的首要原則，反映在歐盟基本權利憲章 (Charter of Fundamental Rights of the European

62
Political Declaration of the Second Ministerial Conference of Ministers Responsible for Integration Policies for
People with Disabilities, 7‐8 May 2004, Malaga, Spain, available at
http://www.coe.int/T/E/Social_Cohesion/soc‐sp/Integration/.
63
同上，第 17 段。
64
European Social Charter, Turin, 18.X.1961. European Treaty Series (ETS), No. 35.
65
參見 Quinn, 同註 17 第 279 頁。
66
European Social Charter (Revised), May 3, 1996, CETS 163 [下文稱, European Social Charter], available at
http://www.unhcr.org/refworld/docid/3ae6b3678.html. For an important overview of the European disability rights
framework, 參見 COUNCIL OF EUROPE, COMMISSIONER FOR HUMAN RIGHTS, HUMAN RIGHTS AND DISABILITY: EQUAL RIGHTS FOR
ALL, (2008), available at
https://wcd.coe.int/ViewDoc.jsp?id=1355349&Site=CommDH&BackColorInternet=FEC65B&BackColorIntranet=FEC65
B&BackColorLogged=FFC679.
67
European Social Charter，同註56，第15段。歐洲議會在障礙者領域有一些出版。參見如Council of Europe,
Rehabilitation and Integration of People with Disabilities (2003); Assessing Disability in Europe—Similarities and
Differences (2002); Access to Social Rights for People with Disabilities in Europe (2003); Legislation to Counter
Discrimination against Persons with Disabilities (2003); Discrimination against Women with Disabilities (2003);
Safeguarding Adults and Children with Disabilities against Abuse (2003).
68
European Convention for the Protection of Human Rights and Fundamental Freedoms, Nov. 4, 1950, 213 U.N.T.S.
222 [下文稱 ECHR]。
69
參見如 Alajos Kiss v. Hungary, Eur. Ct. H.R. Application No. 38832/06, 20 May 2010 (若有人因受監護便遭剝奪
公民權，使其無法投票，違反了歐洲的規範。政府在限制特定弱勢群體，例如心智障礙者的基本權利時，必須
提供充足的理由，也要引用身障公約的相關條文。

306

Union)70
(第 21 條) 和阿姆斯特丹條約 (Treaty of Amsterdam)71
(第 13 條) 中。
2.2.1 個別化 (Personalisation)
身障公約透過其一般性原則和具體實質的義務，定義一框架來理解個別化的概念，並使它在法律
和政策中可操作化。個別化的核心概念脫離了被動、家長式 (paternalistic) 提供障礙者服務，轉而擁
抱個人決策及自主，這由主動參與和法律行為能力的認可所驅動，同時也提供支持，促使代理者充分
告知，推動個別化的自主決策。因此，在身障公約的人權模式下，關注焦點是正義與人類尊嚴等基本
概念，如此一來障礙者有權主張實現其基本需求，而不只是接受慈善施捨72
。
尊重人的固有尊嚴、個人自主 (individual autonomy) 和獨立性 (independence)
身障公約的第三條是第一個列舉「尊重固有尊嚴、包含自由選擇在內的個人自主、及獨立性」73
的
一般性原則。雖然「尊重固有尊嚴」、「個人自主」及「獨立性」等用語並未在身障公約中明確定義，
但它們共同蘊含身障公約更深化的意義，即障礙者身為人類的一分子，有權享受所有的基本人權及自
由，以維護人類尊嚴和自主性。因此在這個意義上，它們表達出個別化的概念。
身障公約的「尊重固有尊嚴」呼應世界人權宣言的序言，強調「要承認家庭所有成員均享有固有
尊嚴及平等、無法剝奪的權利，這是自由、正義及世界和平的根基」74
。歐洲人權法院 (European Court
of Human Rights) 已認識到人類尊嚴和自由是「公約的精髓」75
。法院還指出，該公約「必須被理解
和解釋為一個整體，[它也構成] 保障人類尊嚴的整合體系。」76
同樣地，歐盟基本權利憲章承認歐盟
是立基於「人類尊嚴、自由、平等和團結的普世價值。」77
個人自主 (individual autonomy) 包含自由選擇的概念，與個人自決 (individual self-determination)
的概念密切相關，也是經常使用於身障公約的一個用語78
。雖然一些人權公約沒有採用「個人自決」

70
Charter of Fundamental Rights of the European Union, 2000 O.J. (C 364) 1 [下文稱EU Charter], available at:
http://www.unhcr.org/refworld/docid/3ae6b3b70.html.
71
Treaty of Amsterdam, Oct. 2, 1997, 1997 O.J (C 340)1 [下文稱 Treaty of Amsterdam].
72
聯合國人權事務高級專員強調，在 2006 年 12 月採納身障公約後，轉向權利為本的觀點。參見 UN High
Commissioner for Human Rights, Statement by UN High Commissioner for Human Rights on Convention on Rights of
Persons with Disabilities, delivered at the adoption of the convention in December 2006 (Dec. 6, 2006), available at
http://www.ohchr.org/English/issues/disability/docs/statementhcdec06.doc. (需注意身障公約駁斥將障礙者理解為
「慈善、治療及社會保護的被動對象」，而再次強調障礙者是「權利的主體，有權以主動的社會成員要求這些
權利」。)
73
身障公約，同註 1，第 3(a) 條。
74
UDHR，同註 7 at prmbl.
75
參見如 Pretty v United Kingdom App. No. 2346/02, 29 April 2002, para. 65.
76
參見 Refah Partisi and others v. Turkey of 31 July 2001, Application no. 41340/98, para.43.
77
參見 EU Charter of Fundamental Rights of 2000. 也必須注意到歐盟基本權利憲章將物質權利區分成六個章節。
第 1 章有關人類尊嚴，涵蓋獲得尊嚴、生命、誠信的權利，及禁止酷刑與強迫勞動。
78
偏好「個人自主」一詞的原因，明顯是國際法律中的個人自決概念具有特定的意涵－群體自決的觀念。有關
人類自決的文獻，主要源自兩公約的第一條指出「所有人都享有自決權」。參見 ICCPR & ICESCR，同註 8 & 9，
第 1 條。一般參見 Antonio Cassesse, Self‐Determination of Peoples (1995); James Crawford, ed., The Rights of People

307

或自主性等用語，但在人權實踐中通常會認可之，包括歐洲人權法院的判例79
。此外，在有關身心障
礙者的一般性意見中 (General Comment)，經濟、社會及文化權利委員會──監督《經濟社會文化權利
國際公約》的組織──對反歧視法案和社會政策方案的制訂與施行提出相關建議，讓障礙者能「過著
完整、自決及獨立的生活」80
。 (修訂後的) 歐洲社會憲章和歐盟基本權利憲章承認障礙者有權藉由相
關措施，確保「獨立、社會 (及職業) 融合並參與社區生活」81
。(修訂後的) 歐洲社會憲章82
在提供障
礙者支持的脈絡中提出個別化的重要指引83
。如上所述，第 15 條呼籲各國「採取必要措施，在總體方
案的架構中盡可能為身心障礙者提供指導、教育和職業培訓」，而與提供支持性服務有關的是，必須
朝向促進「社會融合及參與社區生活」84
。
在國際與區域人權法院或法庭中的一些人權判例，已將自主原則認可為人權的基本原則。儘管歐
洲人權法院還未明確建立身障公約中的個人自主或自決權利，但它曾多次表示，個人自主權的概念是
歐洲人權公約85
中用於詮釋各項保障的重要原則。個人自主權的概念已被廣泛應用於權利保護，包括
身而為人建立自我認同的權利，個人的身體選擇權，隱私權，以及思想、道德與宗教的自由86
。
參與 (participation) 及融合 (inclusion)

(1988); P. Thornberry, Self‐Determination, Minorities, Human Rights: A Review of International Instruments, 38 INT’L
& COMP. L. Q. 867 (1989).
79
參見如 Pretty v. United Kingdom, para. 61. (“[T]hough no case has established as such any right to
self‐determination as being contained in Article 8 of the Convention, the Court considers that the notion of personal
autonomy is an important principle underlying the interpretation of the Convention.”). 同上
80
General Comment No. 5, Persons with disabilities (Eleventh session, 1994), U.N. Doc E/1995/22 at 19 (1995),
reprinted in Compilation of General Comments and General Recommendations Adopted by Human Rights Treaty
Bodies, U.N. Doc. HRI/GEN/1/Rev.6 at 24 (2003), available at
http://www1.umn.edu/humanrts/gencomm/epcomm5e.htm.
81
European Social Charter, 同註 56 第 15 條；EU Charter, art. 26. 歐盟憲章 (EU Charter) 包含「就業誠信」。
82
European Social Charter, 同註 56；有關歐洲障礙者權利架構的重要回顧，參見 Commissioner for Human Rights,
Human Rights and Disability: Equal Rights for All (Council of Europe, Issue Paper, Oct. 2008), available at
83
European Social Charter, 同註56第15條；參見Marc Maudient, Access to Social Rights for People with Disabilities
(2003); Council of Europe, Social security as a human right - The protection afforded by the European Convention on
Human Rights (Human Rights Files No. 23) (2007).
84
European Social Charter, 同註 56 第 15 條。
85
參見 Jill Marshall, Personal Freedom through Human Rights Law? Autonomy, Identity and Integrity under the
European Convention on Human Rights, 10 HUMAN RIGHTS LAW REVIEW 391‐394 2010.
86
參見如 H.F. v. Slovakia, ECHR, App. No. 54797/00, judgment 8 November 2005 (該國法院基於申請人患有慢性
的偏執型精神分裂症，也沒有能力從事合法交易或管理她自己的事務，因此剝奪她的法律能力。法院並沒有聽
取申請人的證詞，反而依賴一份舊的精神診斷報告及她前夫的聲稱與證詞。儘管申請人提出上訴，但該國法院
在沒有聽取其證詞或要求更進一步的精神診斷報告便退回其上訴。歐洲人權公約 (ECHR) 的建立則有利於申請
人。)

308

身障公約將參與及融合列為一般性原則，符合國際公約相關機構的整體趨勢，強調參與決策權必
須從廣義來理解87
。身障公約闡述障礙者參與其社會之政治生活的權利，並提供各締約國具體的指引。
身障公約中所稱的參與，超越了選舉投票──儘管此面向記載於身障公約第 29 條中──包含要在與其
他人平等的基礎上，參與影響他們利益的決策過程。因此，身障公約第 3 條所列之參與原則的重要性
及適用性，以及在某些情況下所稱的參與，不僅是障礙者被賦予自由表達意見的權利，還有他們的權
利應被聽見，他們的觀點受到應有的重視88
。這是個別化的核心概念，也對支持措施的提供者具有顯
著意涵。諮詢障礙者及其代表組織，對障礙者支持服務的設計、實施、監督及評估都是非常重要的。
尊重差異，接受障礙者是人類多樣性的一部份
「尊重差異，接受障礙者是人類多樣性和人性的一部分」，這個在第 3 條所列舉的原則並沒有在
身障公約中定義，也不是現行人權公約的術語，但卻清楚表達出身障公約及一般人權法律的構成價值
89
。這似乎承認，例如，人權法律的基本思想認為障礙者是人權的能動主體 (subjects)，而不是被作用
的對象 (objects)。此外，承認身心障礙者是人類多樣性的自然成分，並強調尊重與真誠接受差異──
而不是施予較大寬容──這個條文企圖對家長制、憐憫、施捨之類的身心障礙者概念，提出挑戰。
尊重身心障礙兒童逐步發展的能力
身障公約將「尊重身心障礙兒童逐步發展的能力」列為第 3 條的一般性原則，因此要求公約所確
立的人權與基本自由，必須加以解釋與應用，必須為身心障礙兒童走向成年和獨立，予以認可及協助。

87
人權法律的原則中已充分建立享有參與政治過程的權利，並在世界人權宣言 (UDHR) 第21條表明。
「(1) 人人有權直接或以自由選舉之代表參與其本國政府。
(2) 人人有權以平等機會獲得其本國之公共服務。
(3) 人民的意志是政府權力的基礎；這一意志應以定期與和純正的選舉來展現，而選舉應依據普遍及平等的投票
權，並以不記名投票或相當的自由投票程序來進行。」
UDHR，同註7，第21條，可參考http://www.unhchr.ch/udhr/。
此外，公民與政治權利國際公約 (ICCPR) 指出－
每一位公民應享有權利與機會…不受無理限制…在真正、定期之選舉中投票及被選舉。選舉權必須普及
而平等、應以無記名投票法行之，以保證選民意志之自由表現。
公民與政治權利國際公約，同註 8，第 25 條，可參考 http://www.unhchr.ch/html/menu3/b/a_ccpr.htm。
88
這符合人權法律中一般參與概念的進展，相同地，也有關於兒童權利公約的特殊應用。可參考諸如人權報告
手冊對兒童權利公約的評論：
這個條文為公約設定了基本價值，也可能是其基本挑戰之一。基本上它確認兒童是完全成熟的個人，有
權對所有影響他或她的事務表達觀點，這些觀點也要能被聽見並予以應有的重視。因此，兒童有權參與
影響他或她生活的決策過程，並能以他或她的考量來影響決策…。乍看之下第 12 條會被認為與第 13 條
強調相同的事實，都是有關言論與資訊的自由。事實是兩個條文緊密連結，但兩者都被整合進公約中並
獨立存在，因此必須以下列的方式詮釋，儘管第 13 條承認一般性的言論自由，第 12 條應適用於所有危
及兒童的案例，而強調必須朝向兒童權利來邁進，也讓兒童的觀點可被考慮。
United Nations, Manual on Human Rights Reporting at 426.
89
身障公約，同註 1，第 3 條。

309

因此，「身心障礙兒童逐步發展的能力」這個概念，朝向要在決策過程中行使個人的自主性。第 3 條 (h)
款的第二個面向指出「尊重身心障礙兒童保持其身份特徵的權利」，因此要確保身心障礙兒童是法律
所承認的人，他們的身份特徵也必須被保護。這個概念乃參考兒童權利公約 (CRC)，「承認兒童朝向
獨立成人的發展過程，必須在整個童年期間加以尊重及促進」90
。此外，這個概念和參與的原則密切
相關，特別是兒童權利公約第 12 條「兒童的觀點必須依其年齡和成熟程度給予相對應的尊重」91
。就
這點而言，它與身障公約所承認的法律能力 (legal capacity) 一致，並要求提供適當的支持來協助兒童
做決定。若這個概念要適用於身心障礙者的支持，身障公約要求這些支持，不僅應符合兒童的最佳利
益，還要求有意義的參與及諮詢。
平等 (Equality) 與不歧視 (Non-discrimination)，及提供便利條件的責任
平等及不歧視，無論是在國際和國家層級，都是身心障礙者法律的核心原則。身障公約的生效，
將障礙者的歧視與平等帶進現代的人權法律架構，這在早期的人權公約中較為隱誨且不完整。身障公
約也要讓世界各國的障礙者歧視法律有所進展92
。
身障公約第 5 (1) 條確認「在法律之前，人人平等，有權不受任何歧視，享有法律的平等保護和
平等受益於法律」93
。第 5 (2) 條則要求締約國「禁止任何基於身心障礙的歧視」94
。所謂身心障礙的
歧視在第二條中定義為：
基於身心障礙而加以區別對待、排斥或限制，其目的或效果是損害或剝奪與其他人在平等的基
礎上，認可、享有或行使政治、經濟、社會、文化、公民或任何其它領域的人權和基本自由。
這包括一切形式的歧視，包含拒絕提供合理便利 (reasonable accommodation)95
。
此外，第 5 (3) 條要求締約國採取措施，確保提供合理便利的條件96
。合理便利的概念，最早在
美國身心障礙者法律中明訂97
，而在身障公約的第 2 條定義為：
根據具體情況，在不造成過度負擔的情況下，按需要進行必要的適當修改和調整，以確保障礙
者在與其他人平等的基礎上，享有或行使所有的人權和基本自由98
。
將便利條件整合進身障公約第 2 條身心障礙歧視的正式定義是重要的。它樹立人權必須透過正向
的方式來實施，以對付這個體系持續對身心障礙者的歧視。更重要的是，無法提供或拒絕提供合理的

90
同上。
91
Convention on the Rights of the Child, G.A. res. 44/25, annex, 44 U.N. GAOR Supp. (No. 49) at 167, U.N. Doc.
A/44/49 (1989), entered into force Sept. 2, 1990, art. 12.
92
相關法律改革正在墨西哥、越南、尚比亞及約旦等國發聲中，以上僅列舉幾個國家。
93
身障公約，同註 1，第 5 條。需注意身障公約的序言段提及平等及不歧視，第 1 條宣告公約的目的，第 3 條
闡述不歧視的一般性原則。
94
同上，第 5(2) 條。
95
同上，第 2 條。
96
同上，第 5(3) 條。
97
Rehabilitation Act 1973 § 29 USC § 701 (year); 28 CFR § 41; 29 CFR § 32; 45 CFR § 84.
98

310

便利條件，在身障公約中因此成為單獨且獨特的基本原則，可主張這構成身心障礙歧視。
在身障公約中提供合理便利條件的義務，擴展到更廣泛的社會行動者，因此，以權利為本的障礙
者支持及運用，便與之產生實質關連。政府、雇主、教育提供者、醫療提供者、考試與認證單位、商
品與服務的提供者、私人俱樂部等，若其政策、做法及場所阻礙障礙者的融入及參與，都應合理調整。
提供合理的便利條件必須在不同的情境中，個別分析什麼對障礙者而言是適合的便利條件，也因此，
適合的便利條件必須量身訂做99
。個別化的分析也是重要的，因為相同類型的身心障礙者常被認為需
要相同的便利條件，但很多情況並非如此，適合的便利條件及支持，必須依特定的個人情況來決定，
而非依據他們的身心障礙類型。既然不可能預知所有必要的合理便利條件，那麼國家的法律便相形重
要，要以彈性、開放的方式來提供障礙者的支持條件。
法律能力 (legal capacity) 及賦予個人化的決策權
為進一步推展尊嚴、自主及獨立的原則，身障公約的第 12 條指出在法律之前身心障礙者的平等
地位。第 12 條確認身心障礙者「在生活的各方面享有與其他人平等的法律權利能力」100
。這個根本
且重要的條款反應出太常發生的現實情況，即身心障礙者受到法律及相關做法剝奪他們的法律能力
101
。因此，他們選擇如何生活、在哪裡生活的自主及自由，在這些情況下確實遭到抹除。在提供障礙
者支持時也面臨同樣的困境。
第 12 (1)條再次確認，在法律之前，所有人類，包括所有的身心障礙者，都有被認可的權利，必
須被認可為權利的擁有者 (rights holders) (相對於被作用者 (objects)) 102
。在法律前受到平等認可的權
利包含兩個重要元素：(1) 法律人格 (legal personality) 的認可，可被賦予權利與義務；(2) 行為能力
的認可，任何人在法律之下均可行使法律權利與義務。第 12 (2) 條則認可享有平等的法律權利能力
103
。第 12 (3) 條則要求採取支持性的決策機制 (協助個人做決定)，而不是代理的決策機制 (由其他人

99
參見 Lisa Waddington, When it is Reasonable for Europeans to be Confused: Understanding when a Disability
Accommodation is ‘Reasonable’ from a Comparative Perspective, 29 COMPARATIVE LABOR LAW & POLICY JOURNAL 3,
April 2008, pp. 101-124.
100
101
參見如 Mental Disability Advocacy Centre, Guardianship and Human Rights in Bulgaria: Analysis, Policy and
Practice, 2007, pp.19-20, available at
http://www.mdac.info/documents/Bulgaria%20report_comprehensive_English.pdf
102
身障公約，同註 1，第 12(1) 條。
103
同上註，第 12(2) 條；根據人權事務高級專員辦公室，「在法律之前承認為人」及「法律能力」這兩個用語
是不同的。「法律人格」(源自身障公約第 12(1) 條) 的概念，承認在法律之前的個體為人，也是享受其它權利
的先決條件，而「法律能力」是更廣義的用語，包含個人有能力成為權利與義務的主體，以及有能力行動。「行
動能力」意指人具有能力及權力來參與特定事業或交易，與其他個人維持特定的地位或關係，以及更廣泛的創
造、調整或消滅法律關係。OFFICE OF THE UNITED NATIONS HIGH COMMISSIONER FOR HUMAN RIGHTS, HUMAN RIGHTS

311

代為決定) 104
。
支持性的決策模式必須允許及促使個人獨立行使法律能力，並保留代理者 (agency) 的選項105
。
在此模式之下，有時可能不會把決定權移轉給第三方 (導師、監護人)。支持性的決策方式無疑需要國
內法律的改革，例如修訂或廢除監護人制度，並採用資源充足的、個別化的且適當執行的支持性決策
機制。此外，在障礙者可能遭遇的各種法律事務及社會活動中，支持性的決策必須符合障礙者的多元
需求。在這個情境中所提供的支持措施，將依據不同的問題情況而有多種形式，例如個人助理、同儕
支持、申訴專員或公設辯護律師，或在特定的情境下，利用非正式的網絡來提供支持。
為了落實身障公約的第 12 條，任何支持性的決策架構，都必須有防止濫用的最低保障。正如第
12 (4) 條所提出的，這些防護措施要求支持措施的提供者應協助身心障礙者做選擇，而不是代替他們
的意願及偏好106
。支持措施的提供者因此必須尊重受支持者的權利、意願及偏好。支持的類型必須視
個人需求而調整，也不應涉及利益衝突和不當影響。此外，支持的安排應接受獨立、公正機構的定期
審核。
最後，第 12 (5) 條強調障礙者的特殊權利議題，他們有權擁有財產並能繼承，及掌控他們的財務。
該條文明確指出，身心障礙者的財產不可在缺乏合法理由的情況下遭到剝奪。因此締約國必須義不容
辭地提供協助，使障礙者有能力管理他們的財務。第 12 (5) 條進一步保障其財產不受任意剝奪107
。
總結來說，公約第 12 條明確認可障礙者的法律能力，並提供措施來協助他們行使法律能力的權
利。持續提供支持是必要的，因此儘管某些障礙者不需要協助便能做決策，但某些障礙者的確需要較
強的協助。不論需要哪種程度的協助，締約國必須確保這樣的支持措施不會被濫用，也不會侵害受協
助者的人權。
2.2.2 選擇居住安排
身障公約第 19 條是有關獨立居住與社區居住，展現自由權的延伸，亦即自由選擇自己的居住安
排108
。如同某些學者所強調的，身障公約抱持著融入社區的權利，也在國際人權公約中第一次清楚說
明這樣的權利109
。第 19 條因此特別指向要消除隔離、聚集及社會孤立的環境，這也是身心障礙者在
歷史上被迫或不得不這樣居住110
。身障公約的起草者在公約的協商階段就特別要消除將障礙者隔離與

COUNCIL DISCUSSED THE HUMAN RIGHTS OF PERSONS WITH DISABILITIES ON 6 MARCH 2009 (2009),
http://www2.ohchr.org/english/issues/disability/hrcresolution79.htm.
104
身障公約，同註 1，第 12 (3) 條。
105
這個基本想法也與第 12 條第 4 款的必要保障措施有關，「應確保與行使法律能力有關的措施可尊重當事人
的權利、意志及偏好」。
106
身障公約，同註 1，第 12 (4) 條。
107
同上註，第 12 (5) 條。
108
109
同上註；Eric Rosenthal and Arlene Kanter, The Right to Community Integration for people with Disabilities Under
United States and International Law, in DISABILITY RIGHTS LAW AND POLICY: INTERNATIONAL AND NATIONAL PERSPECTIVES
309‐368 (S. Yee & M. Breslin ed., 2002).
110
Michael Stein and Gerard Quinn, Challenges in Realising the Right to Live in the Community, in Focus on Article 19

312

分化的居住安排 (例如，機構、社會照顧家庭、團體家庭及育幼院)，而這通常代表他人的選擇。第
19 條有力地要求締約國確保障礙者可以居住於社區中，與他人擁有相同的居住安排，這些選擇，能支
持障礙者在社區生活中的融入及參與111
。該條文也要求對障礙者的服務必須「支持社區生活及融合」，
並著眼於「避免孤立或隔離於社區」112
。
這個條文也讓障礙者像其他人一樣，可以選擇要和誰一起居住。為了這個目標，締約國必須確保
障礙者能獲得他們所需的支持服務，好讓他們自由居住在社區中。這些支持服務包含在宅支持、住宅
及社區的支持服務及個人照護。第 19 條也企圖確保主流的社區服務與設施可被障礙者用得到，回應
障礙者的需求，如此能促進他們居住於社區及成為社區一份子的自由。
某些國家的政策仍傾向於改善 ── 也因此強化 ── 機構化的照顧，而非推動社區為本
(community-based) 的居住113
。國際障礙者組織指出兒童居住在機構 (institutions) 中的問題，並宣告
「政府與國際捐款者在全球花費了大量經費，興建、重建那些對身心障礙兒童有如刑房的機構，卻不
願在必要時支持家庭、代替家庭或提供社區服務與教育」114
。這些政策以家長式的預設為前提，並未
反應出參與、包容及其它障礙者權利概念等原則。如同歐洲社區居住聯盟 (European Coalition for
Community Living) 所強調的：
身心障礙者能如一般公民居住於他們在地的社區，獲得他們所需的支持來參與日常生活。這包
含居住在他們自己的家或與家人一起居住，前往工作、前往學校、並參加社區活動。115
身障公約的含義非常明確──與其把所有資源分配給重建隔離化的機構，這些資源不如用於提供
障礙者適當的支持以居住在社區中。此外，當國家政策推動社區為本的居住及獨立生活時，若政府無
法提供障礙者直接補助或個別化資助方案，會對障礙者管理自身事務造成重大阻礙。顯然，提供直接

of The UN Convention On The Rights Of Persons With Disabilities 37 (European Coalition for Community Living 2009).
111
112
同上。
113
這是保加利亞的情況，如同歐洲障礙者專家學術網絡 (ANED) 的意見，全國性的辯論聚焦在促進機構照顧
的品質，而非創造條件讓兒童及成人居住在他們自己的社區。但也須注意到，朝向獨立生活的一些微小進展也
正在發生。參見 KAPKA PANAYOTOVA, ACADEMIC NETWORK OF EUROPEAN DISABILITY EXPERTS (ANED), ANED
COUNTRY REPORT ON THE IMPLEMENTATION OF POLICIES SUPPORTING INDEPENDENT LIVING FOR DISABLED PEOPLE:
BULGARIA (2009),
http://www.disability-europe.net/content/pdf/BG-6-Request-07%20ANED_2009_Task_5_template_Bulgaria_to%20pu
blish_to%20EC.pdf.
114
DISABILITY RIGHTS INTERNATIONAL, THE WORLDWIDE CAMPAIGN TO END THE INSTITUTIONALIZATION OF CHILDREN,
http://www.disabilityrightsintl.org/learn‐about‐the‐worldwide‐campaign‐to‐end‐the‐institutionalization‐of‐children/.
「機構化的主要驅動力－特別在發展中國家－是運用方向錯誤的國外贊助基金來興建新的機構或重建老舊設
施，而對於那些希望讓他們小孩留在家中的家庭，卻不提供相關服務的支持與可及性」。來源同上。
115
EUROPEAN COALITION FOR COMMUNITY LIVING, CREATING SUCCESSFUL CAMPAIGNS FOR COMMUNITY LIVING, AN
ADVOCACY MANUAL FOR DISABILITY ORGANISATIONS AND SERVICE PROVIDERS (November 2008) at 71.

313

補助的機制可促進獨立與自主決策。常見的情況是當政府提供直接補助的選項，肢體障礙者比起心智
障礙者較有可能受益，這是由於特定障礙類型的污名，或無力協助支持性的自主決策。由於資金不足
而缺乏社區導向的服務則是另一個問題。至於資源不恰當分配致使無法提供足夠時數的個別協助來支
持社區居住與融合，正如第 19 條所設想的，更是一個共通的問題。
回顧歐洲有關選擇居住安排的相關政策
歐盟及許多成員國已正式批准身障公約，而其它歐洲國家也已簽署，因此確立了它們支持障礙者
權利的承諾。歐盟的「就業、社會政策與平等機會委員會」出版一篇報告，回顧歐洲現有的政策，並
建議歐盟委員會，遵循身障公約，指出由機構化照顧轉向社區為本的居住安排到底有多好116
。這個報
告指出四個機構化的主要問題：(1) 去個別化的處遇及互動，包括拿走個人擁有的物品，這是個人特
質的重要象徵；(2) 嚴守例行程序，像是吃飯、活動及睡覺的固定行程，缺乏個人喜好的彈性；(3) 團
體處遇，就像是「處理」一群人而缺乏個人隱私；以及 (4) 與社會的距離及排除117
。
的確，在許多歐盟國家，機構化照顧仍占公共照護支出的一半以上118
。根據該份報告，部分歐盟
國家嚴格的立法及行政規則，使得在大型機構外提供障礙者服務變得相當困難119
，因此障礙者仍無法
選擇他們的居住安排，而被迫終生居住於機構化的環境中。近期歐洲社區居住聯盟一份針對斯洛維尼
亞的報告，對資金如何流向機構、不允許其它居住安排的選項，提出近一步的證據，報告指出：
如果一個身心障礙者居住在長住型的機構中，生活開銷會由國家補貼，資金直接撥給機構。但
選擇獨自生活的障礙者則缺少這個資金支持。這意味著想要獨立生活的障礙者需要有收入來
源，或是由他們的家人提供資金協助120
。
斯洛維尼亞目前支持障礙者居住在機構中，但不提供障礙者其它選項，不讓他們可在適當的支持
下居住在社區中並安排自己的生活。其它歐盟國家的政策也很類似，例如愛爾蘭有 72 個身心障礙機
構，每年的營運花掉該國 50 億歐元121
。目前，有 4,000 名身心障礙者居住在由志願組織或宗教團體所
營運的機構中。
歐盟成員國及土耳其一個近期的研究《去機構化與社區居住：成果與花費》(DECLOC) 發現有將

116
EUROPEAN COMMISSION, EMPLOYMENT, SOCIAL AFFAIRS, AND EQUAL OPPORTUNITIES, AD HOC EXPERT GROUP ON THE TRANSITION
FROM INSTITUTIONAL TO COMMUNITY‐BASED CARE (2009), available at
http://ec.europa.eu/social/BlobServlet?docId=4017&langId=en [下文稱 EC AD HOC EXPERT GROUP TRANSITION FROM
INSTITUTIONAL TO COMMUNITY BASED CARE].
117
同上之第 7 頁。
118
同上之第 9 頁。
119
同上。
120
EUROPEAN COALITION FOR COMMUNITY LIVING (ECCL), FOCUS ON ARTICLE 19 OF THE UN CONVENTION ON THE
RIGHTS OF PERSONS WITH DISABILITIES, “WE WANT EQUAL, NOT SPECIAL TREATMENT!”, at 34,
http://www.community-living.info/index.php?page=308&news=423 (last visited August 24, 2010).
121
Carl O’Brien, Institutions for disabled should be closed down, says report, THE IRISH TIMES, July 12, 2010, available at
http://www.irishtimes.com/newspaper/frontpage/2010/0712/1224274518367.html?via=mr.;

314

近 120 萬名身心障礙兒童與成人居住在長住型的機構中122
。DECLOC 指出在所有可獲得相關資訊的
25 個國家中，有 16 個國家的政府 (地方或區域)，至少有一半的資金用於資助超過 100 床的身心障礙
機構123
。此外，該報告也指出其中 21 個國家的政府資金主要用於支持超過 30 個床位的機構124
。這份
報告強調從機構化照顧轉向社區支持的重要性，符合既有相關的國際人權標準125
。它也強調成員國
應：讓家庭成員及孩童參與決策過程，運用結構性的資金從機構轉向社區為本的照顧，建立適當的監
督體系來確保生活品質，創造支持系統及適當的工作條件給專業及非正式的支持服務提供者，並增強
這個轉變過程中相關政府部門及單位間彼此的合作126
。政府資金用於機構化照顧而缺乏有效的個別化
資助方案，阻礙了身心障礙者的獨立生活及社會融合。
歐洲理事會部長委員會《對身心障礙兒童去機構化與社區居住的建議》，代表一明確與負責任的
轉向，遠離機構化而朝向社區為本的居住安排127
。該建議強調「把兒童放進機構化的照顧形式是否符
合兒童權利，存有嚴重疑慮」128
，並建議政府採取措施「在合理的時程內、透過全面性的方法，來將
機構化的服務取代為社區為本的服務」129
。這個建議進一步闡述，要從機構化轉變為社區為本的支持
服務，所需採取的原則及行動。這也呼應曼塞爾 (Mansell) 的研究，強調機構化的替代方案必須敏銳
察覺到，轉變機構文化是必要的，如此社區服務的提供才能夠導向完整的社會參與130
。這個取向認為，
如果僅是把同樣的機構文化移轉到社區服務的提供，是無法被接受的。
2.2.3 生活在社區中
前面的章節已概述一般性原則如何強化現有的一些做法來促成障礙者完全融合於並參與社會，也
強調獨立自主與尊重個人決定的個別化概念。這些概念的整體方向是以有意義的方式促進充分融合，
並以強化參與社區的方式來推動支持系統的改革。下一部分將明確指出在國際法中，及歐洲的法律和
政策中，所表達的特定實質權利。這些權利及支持原則的結合可協助促成障礙者的社區參與，並解決
那些排除性的阻礙及隔離。

122
Mansell J., Knapp M., Beadle-Brown J., and Beecham J. (2007) Deinstitutionalisation and community living –
outcomes and costs: report of a European Study. Volume 2: Main Report. Canterbury: Tizard Centre, University of
Kent.
123
同上。
124
同上。
125
EC AD HOC EXPERT GROUP TRANSITION FROM INSTITUTIONAL TO COMMUNITY BASED CARE, supra note (), at 20.
126
同上，第 20‐21 頁。
127
Recommendation CM/Rec (2010)2 of the Committee of Ministers to Member States on Deinstitutionalization and
Community Living of Children with Disabilities, 3 Feb. 2010, reprinted in European Yearbook of Disability Law, vol. 2
(Lisa Waddgington & Gerard Quinn, eds., 2010) at pp. 385‐394.
128
129
130
Jim Mansell et al, Deinstitutionalisation and Community Living: Position Statement of the Comparative Policy and
Practice Special Interest Research Group of International Association for the Scientific Study of Intellectual Disabilities,
54 Journal of Intellectual Disability Research, 104–112 (February 2010) at 105.

315

促進可及性 (Accessibility)
身障公約的序言提醒我們，公約在很大程度上是因障礙者一直遭到排除131
而被促成，也認為社區
參與對社會及人格有正面助益132
。公約第 9 條 (可及性) 著眼於移除那些建立在歧視態度上的阻礙，
在公共及私人領域，藉由促進不同形式的可及性，包括實體的、科技的、經濟的及社會的可及性，以
及資訊及溝通的可及性。它賦予締約國一般性的義務，確保身心障礙者能平等接近生活環境，讓他們
可以獨立並完全參與生活的所有層面。它也要求締約國找出那些損及可及性的障礙並消除之，並特別
強調公共及居家建築、交通與基礎設施、資通訊科技及系統、公共服務及基礎設施等，都應對身心障
礙者是可接近的。身障公約提供一個達成可及性的廣泛架構，這也關乎不同層面的融合。
除此之外，公約第 9 條要求醫療設施、電子服務及緊急服務對身心障礙者要易於接近，在向大眾
開放的建築和設施提供點字及易讀的標誌，提供其它形式的現場協助和工具，便於身心障礙者在對大
眾開放的建築和設施中使用133
。第 9 條強調締約國要讓障礙者可獲得新的資通訊技術與系統，包括網
際網路，也要求締約國將無障礙融入資通訊技術和系統的設計、發展與生產之中134
。第 9 條也要求都
市及鄉村地區要有相同程度的無障礙環境。最關鍵地，這些義務不只適用於政府提供的公共服務及設
施，還適用於私部門135
。第 9 條釐清無障礙環境要透過多樣化的執行方式來達成，包含發展及監督無
障礙的最低標準及準則136
，並培訓無障礙議題的權益關係人137
。
歐洲理事會的 2010/48/EC 號決議138
有關身障公約的部分，宣布其關注物品、服務、個人移動 (如
交通)、及資通訊科技等不同領域的可及性。在物品及服務的領域，理事會第 2001/85/EC 號方針139
著
重於保障乘客的安全，並建立專門條文來規範八人座以上的載客交通工具。這個方針也注重移動能力
較低者140
的需求，透過技術規範的法規來促成符合歐洲共同體交通與社會政策的無障礙條件。這個方

131
參見身障公約，序言 (k) (儘管有一些軟性法 (soft laws)，「障礙者仍持續面對阻礙，阻止他們以平等社會成
員參與」；身障公約表達了這個疑慮)。
132
參見上註，序言 (m) (認為「障礙者的完全參與將增強他們的歸屬感，並顯著促進社會的人權、社會與經濟
發展，消除貧窮」。
133
參見身障公約，同註 1，第 9 條。
134
同上註。
135
同上註，第 9(2)(b)條。
136
同上註，第 9(2)(a)條。
137
同上註，第 9(2)(c)條。
138
Council Directive (EC) 2010/48.
139
Council Directive (EC) 2001/85 是有關 8 人座以上 (不含司機) 載客車輛的特別規定，並修正 Directives
1970/156/EEC and 1997/27/EC [2002] OJ L43/1.
140
需注意，Directive 2001/85/EC 對「移動能力較低者」的定義廣泛，包含使用公共運輸有困難的所有人，例如
身心障礙者 (包含感官與智能受損者與輪椅使用者)；肢體障礙者；身材較小者；隨身行李較重者；年長者；懷
孕婦女；推購物推車者；帶小孩的人 (包含坐在嬰兒推車中的孩童)。

316

針設定一致性的技術要求141
，讓八人座以上車輛 (不含司機座位) 可據以設計。在產品安全及消費者
保護的領域，有關醫療產品的 2001/83/EC 號方針142
要求點字的資訊必須印製在包裝上，並要求授權經
銷商應確保資訊說明手冊能提供給盲人及部分視覺障礙者143
。然而，除了確保對視障者無障礙的相關
標準外，該方針並未說明針對其它類型障礙者的無障礙做法，特別是智能障礙者可能需要不一樣的便
利條件，例如能表達產品用途的符號或象形圖 (pictogram)144
。
身障公約也以其它方式來支持無障礙環境，例如透過第 20 條 (個人移動能力) 要求締約國採取有
效措施，來確保障礙者的個人移動具有最大可能的獨立性145
。有一個列舉性的清單 (但尚未窮盡列舉)
指出可採取哪些措施：
 使身心障礙者能夠依自己選擇的方式和時間，以低廉費用享有個人行動能力。
 使身心障礙者能夠得到優質的助行器、用具、輔助技術以及各種形式的現場協助和工具，包括
以可負擔的費用提供這些服務。
 向身心障礙者以及專門工作人員提供行動技能培訓。
 鼓勵生產助行器、用具和輔助技術的單位，考量身心障礙者行動的各個層面146
。
歐洲的政策正在朝向促進個人的移動能力來進展。例如，在運輸環境中，法規 1107/2006147
是針
對障礙者的通勤措施，用於保護障礙者及行動不便者搭乘飛機的權利。這個法規的基本原則特別依循
身障公約第 9 條的要求，例如，障礙者不可被拒絕登機或訂位，而負責面對乘客的工作人員應具有身
心障礙者的意識，並接受身心障礙者權利的相關訓練。
充分落實社會權利 (Social Rights)
如前所述，參與做為一種價值及一般性原則，深嵌於身障公約的文字中，並在公民、政治、經濟、
社會及文化領域都產生特別的應用方式148
。身障公約指出，在社會及文化生活等各領域中用以強化參
與的具體措施。社區融合的社會效果透過身障公約中具體的社會權利而得以強化。因此，社會方案已
不僅僅是管理或維護身心障礙者的方式，身障公約象徵這個重要突破。身障公約中的經濟、社會及文
化權利，以及當今歐洲身心障礙政策中的相關權利，強化了障礙者的自由，並讓他們得以獨立與管理

141
參見 Annex VII of Directive 2001/85/EC.
142
Directive 2001/83/EC of the European Parliament and of the Council of 6 November 2001 on the Community code
relating to medicinal products for human use, [2001] O.J. L.311/67.
143
參見 Article 56(a) of Directive 2001/83/EC。
144
參見 Inclusion Europe Report, “Inclusion of people with severe and profound intellectual disabilities”, p. 6,
available at http://www.inclusionireland.ie/downloads/Inclusionofpeople.pdf.
145
146
同上註。
147
Regulation (EC) No 1107/2006 of the Parliament and of the Council of 5 July 2006 考量障礙者及移動能力較低
者搭乘飛機 OJ L 204 of 26.7.2006.
148
參見身障公約，同註 1，第 3 (c)條。

317

自己的生活。
例如身障公約第 30 條是關於參與文化生活、休閒活動及運動，指出參與是促進融合及社會改變
的動力149
。身障公約認為障礙者完全融入社會的核心條件，是他們有權參與各種文化、娛樂、運動及
休閒活動，這是國際人權法律對於一般性權利最詳細的表述，也直指其對障礙者的重要性150
。第 30
條包含締約國有責任採取措施，來協助障礙者到達文化展演或服務的舉辦場所，例如劇院、博物館、
電影院、圖書館及旅遊服務151
。這也包含盡可能前往紀念場館或國家文化重要遺址152
。很顯然地，身
障公約認定障礙者也有權利發展其創意、藝術及智慧潛能來達成個人及社會的利益153
。
身障公約的其它條文，同樣強調社會權利做為社區參與及完整公民權進展的推動力。因此，身障
公約的第 19 條，除了創造讓障礙者選擇居住安排的權利，也清楚表述障礙者融入社區及參與的權利
154
。為了使障礙者融入他們的社區，必須確保在各種社區環境中都提供合適的支持措施。因此，要達
成公民權、社區融合及社區參與的目標，第 19 條必須與身障公約的其它一般性條文放在一起理解：
就業155
、無障礙156
、教育157
、文化及娛樂活動158
、決策過程159
、選舉160
，及確保障礙者都是他們社區
中不可分割的一員。
歐盟的社會權利委員會已承認社會權利與公民權間有很強的連結。例如在一項教育申訴中，歐洲
自閉兒協會 (Autism Europe) 指控法國無法達到修訂版歐洲社會憲章第 15(1)條及其它的義務。在歐洲
自閉兒協會對法國的控訴中161
，指出自閉兒童及成人，由於沒有適當的支持，因此無法在主流學校環
境或特殊教育機構中，切實享有受教的權利。換句話說，學校體系並無法符合他們的個別需求。委員
會發現，法國未能符合憲章所載明的義務，因為她未能證明已採取合理步驟來朝向第 15 條和其它相
關權利的實現，包括第 17 條 (兒童接受社會支持的權利) 及第 E 條 (平等)。最關鍵的是，委員會宣
稱：
第 15 條的基本願景是障礙者享有平等公民權，且首要權利正是「獨立、社會融合和參與社區

149
更多與公約第 30 條有關的內容，一般參見 Michael A. Stein & Janet E. Lord, Jacobus tenBroek: Participatory
Justice, and the UN Convention on the Rights of Persons with Disabilities, 13 TEX. J. C.L. & C.R. 167 (2008); Janet E. Lord &
Michael A. Stein, Social Rights and The Relational Value of the Rights to Participate in Sport, Recreation and Play, 27
BU INT’L L. J. 249 (2009). 亦可參考 SPORT IN THE UNITED NATIONS CONVENTION ON THE RIGHTS OF PERSONS WITH DISABILITIES (Eli
Wolff et al. eds. 2007) [下文稱 UN SPORT], available at
http://www.sportanddev.org/data/document/document/336.pdf.
150
一般參見 UN SPORT，同註 139。
151
身障公約，第 30(1)(c)條。
152
參見上註。
153
參見上註，第 30(2)條。
154
155
同上註，第 27 條。
156
157
158
159
同上註，第 4(3)條。
160
161
Autism Europe v. France, Complaint No. 13/2002, decision on the merits of 4 November 2003.

318

生活」162
。
委員會也認為教育在促進公民權上扮演重要角色163
。
透過有意義的就業促成社區參與
身障公約的第 27 條確認，身心障礙者享有與其他人在平等基礎上工作的權利，有權在開放、具
有包容性的勞動力市場，自由選擇或接受工作機會164
。它列出締約國應採取的一系列措施以落實工作
權利，包含在各種形式、部門及層級的就業事項上禁止歧視，特別包含招募條件、聘雇、繼續就業、
職涯發展及職業健康與安全。第 27 條要求締約國有義務透過立法，確立職場能提供障礙者合理便利
條件165
。締約國也被要求確保障礙者能在工作場所中免於被騷擾，並且有適當管道來申訴有關工作的
抱怨166
。它再次強調障礙者有權與其他人一樣，行使他們參與工會的權利，例如確保障礙者可以加入、
融入勞工與職業工會或相關組織。此外，締約國必須確保障礙者能夠獲得各類型的就業支持服務 (例
如，求職與實習服務、實習支援、職位保留服務、職能治療等)，以及教育與訓練 (例如，技術或職業
培訓、就業指導計畫等) 167
。第 27 條訂立的其它措施則有關促進障礙者的自雇、創業及個人營業機會，
以及積極的行動方案或誘因來鼓勵私部門聘用障礙者168
。這些積極的措施包含稅賦減免、提供雇主金
融補助或制定障礙者的聘雇比率等。最終，聯合國身障公約第 27(2)條要求締約國確保障礙者不受奴
隸勞役及強迫勞動169
。
在歐洲的發展，完全融合的概念因身心障礙者的就業而得以強化。值得注意的是，1997 年的阿姆
斯特丹條約170
賦予歐洲共同體對抗基於身心障礙的歧視 (及基於其它問題的歧視)。這個發展是建立
2000 年平等就業方針 (Employment Equality Directive) 的起點171
。其目標是禁止因身心障礙、宗教信
仰、年齡、性傾向而在聘雇、就業及職業培訓上有所歧視，並積極對抗這樣的歧視。方針的第 2 條將
歧視定義為，因為他/她的障礙狀況而有任何「不利」的對待，包含直接或間接的歧視及騷擾。然而要

162
同上註，第 48 段。
163
歐洲社會委員會的另一項決議，強調身心障礙兒童教育品質的重要性，可影響他們的社會權利與完全參與，
欲更了解該決議可參見MDAC v Bulgaria, Complaint No. 41/2007, European Committee of Social Rights, Decision of 3
June 2008.
164
165
參見 UN Doc A/HRC/10/48, pp 17-18.
166
參見身障公約，同註 1，第 27(1)(b)條。
167
168
同上註。
169
同上註，第 27(2)條。
170
阿姆斯特丹條約修正了歐盟條約，這是建立歐洲共同體與一些相關法案的條約。之後於 2001 年 2 月 26 日於
尼斯簽訂，並發表於 Official Journal of the European Communities No C 80 of 10 March 2001，第 5 條。
171
Council Directive (EC) 2000/78, establishing a general framework for Equal Treatment in Employment and
Occupation [2000] O.J. L303/16; available at
http://eur-lex.europa.eu/LexUriServ/LexUriServ.do?uri=OJ:L:2000:303:0016:0022:EN:PDF.

319

注意的是，就業方針並未對身心障礙提出明確定義172
。該方針的第 5 條的確要求雇主提供給障礙者便
利條件，也要求成員國確保雇主採取適當措施來使障礙者獲得並參與就業，甚或獲得晉升，以此來促
使符合資格的障礙者能夠加入勞動市場173
。不幸的是，該方針並沒有如身障公約明確指出何謂因無法
提供合理便利條件而構成歧視。希望未來的發展可以改正這個不足。
創新的資源機制
資源機制無疑對達成身障公約的遠大目標、促進障礙者完全參與社區生活等事項，扮演不可或缺
的角色。儘管全球經濟衰退對世界各國的社會基金造成龐大壓力，但某些創新的資金機制已就位，可
以協助促進障礙者的社區參與。然而，身障公約的起草者並沒有選擇納入任何由發展中國家支持的資
源機制，也沒有納入某些經常包含在其它國際公約，如：環境協議中的機制。然而，在歐洲脈絡中的
一些發展值得摘錄出來。
有一些結構性基金已經建立，可協助歐盟執行相關策略，縮減其區域間的差異，這或被稱為凝聚
政策 (Cohesion policy)。歐洲議會理事會條例第 (EC) 1083/2006 號174
為三個這類型的基金建立一般性
規範：歐洲區域發展基金 (ERDF)，歐洲社會基金 (ESF) 及凝聚基金 (Cohesion Fund)。與障礙者社
區服務發展最有關的基金機制則是歐洲社會基金及歐洲區域發展基金。
歐洲社會基金的建立是為了消除歐盟各地經濟繁榮與生活水準的差異，著眼於促進經濟福利，並
支持一些計畫來促進就業，或協助公民增進教育水準與技能以提升就業前景175
。該基金協助歐盟成員
國達到歐洲就業策略及身心障礙行動方案的目標；也對身心障礙領域工作者的訓練方案予以資助。歐
洲區域發展基金則著重在補助「能創造或維持工作機會、基礎設施與地方發展提案的生產力投資，及
中小型企業的商業活動」176
。這些投資可能包含「健康與社會基礎設施的相關投資，能促進區域與地
方發展、提升生活品質」177
。如同「從機構轉型社區照顧特設專家組織」指出，在某些國家，該基金

172
同上註。
173
174
Council Regulation (EC) No 1083/2006.
175
Report of the Ad Hoc Expert Group on the Transition from Institutional to Community based Care, (September 2009)
at p. 22. 也可參見 European Coalition on Community Living, Wasted Time, Wasted Money, Wasted Lives…A Wasted
Opportunity? A Focus Report on how the current use of Structural Funds perpetuates the social exclusion of disabled
people in Central and Eastern Europe by failing to support the transition from institutional care, 2010.
to community-based services
176
參見 European Communities, Ensuring accessibility and non-discrimination of people with disabilities: Toolkit for
using Structural and Cohesion Funds, European Commission, Directorate-General for Employment, Social Affairs and
Equal Opportunities, Unit G.3, 2009 at 13.
177
同上。

320

已用於資助建造新的居住機構或修建既有居住機構178
。該報告建議，必須發展出運用基金的指導原
則，而指導原則也應著重在確保「當機構的新建、擴增或加蓋計畫違背身障公約，或違背歐盟的平等
機會、社會融合與歧視政策時，將失去受補助的資格」179
。如同歐洲議會理事會的一份報告所強調：
為了使身心障礙者積極參與社會，給予社區互動的機會是必要的。將障礙兒童與成人安置於機
構，將使他們難以融入社會，因為他們已與社會的其他成員隔離，這也會嚴重侵害他們的健康
發展，阻礙他們行使其它權利。去機構化 (deinstitutionalisation) 是讓障礙者盡可能獨立自主、
成為完整公民的先決條件，如此他們才能獲得教育、就業及其他各項服務的機會180
。
顯然，結構基金不應用於延續及強化機構照顧體系。相反的，它們必須用於提高對障礙者居住於
社區的意識，並與他人擁有平等選擇。鼓勵障礙者及他們的代表組織加入此種訓練的規劃及執行也是
重要的。
歐洲議會理事會條例 1083/2006 號要求促進身障公約的落實，也與障礙者權利有特殊關係；要求
成員國及委員會，在基金提供補助的期間，採取所有適當措施來阻止對身心障礙者的任何歧視181
。條
例的第 16 條指出，身心障礙者的可及性與否應是「定義基金是否補助某些方案的觀察標準之一，也
必須在執行的各種階段都考慮進來」182
。該條例與身障公約的所有領域都有關，該基金的補助亦應尊
重、促進身障公約的一般性原則。最後，國家型計畫與結構基金的共同資助必須取決於對障礙者的包
容及可及性。如此一來，它才能夠對身障公約的有效落實扮演關鍵角色。
2.3 提供公共支持與服務
歐洲為了努力朝進步性的、以權利為本的方向，來改革對障礙者的支持、建立國際性及區域性的
標準，指引政府如何簽約及發包公共採購，便具有特殊的重要性。世界各國政府長期利用發包來提供
障礙者支持服務，但在許多歐洲國家，接受政府公基金的組織及機構，卻反而可能不促進障礙者的人
權。支持措施必須在完全參與、融合與自主的架構下來提供，這與依賴、隔離及家長式照顧相互對立。
換言之，以社區為本的支持應該要促成障礙者的完整公民權，促進融入社區生活的所有面向。因此，
愛爾蘭許多由教會支持的組織，在機構的環境中提供障礙者「服務」，這完全違背提供障礙者適當「支
持」成為社區的一份子來獨立生活183
。權利導向 (rights-oriented) 的觀點將社會與經濟支持的運用，

178
Report of the Ad Hoc Expert Group on the Transition from Institutional to Community based Care, (September
2009) at p. 22.
179
同上。
180
Parliamentary Assembly of the Council of Europe 1 Council of Europe, Parliamentary Assembly, Access to rights
for people with disabilities and their full and active participation in society, Report, Social, Health and Family Affairs
Committee, Doc. 11649, 8 August 2008, paragraph 44.
181
同上。
182
同上。
183

321

視為一種方式來「強化社會融合並提供物質手段，使個人可藉以實現他們自己的生活」184
，而愛爾蘭
的作法並不符合這個觀點。
公共發包的程序在促進──或不幸地在很多時候會抑制──障礙者的人權，扮演必要的角色。政府
發包是促進環境責任與企業社會責任的重要媒介，因公共採購占歐盟成員國國民生產毛額 (GDP) 的
15-20%185
。由於歐盟國家普遍持續依賴政府發包，因此成員國如何確保政府發包可適當強化對障礙者
的支持，是必須考量的事項。歐盟近期批准身障公約，是對公共採購及發包做出反省的起點。
身障公約的第 32 條強調，國際合作與障礙者的包容性發展，能在各國落實身障公約的努力中扮
演支持性的角色186
。該條文關乎提供障礙者的支持與服務，締約國藉由與其它國家、相關國際及區域
性組織、支持國家措施的市民社會，形成夥伴關係，來進行跨國合作，並使身障公約得以落實。重要
的是，身障公約的第 32 條要求，為國際合作所做的所有努力，包含國際發展方案，應要讓身心障礙
者可參與且包容，這很明顯意味著，提供障礙者支持及服務不能僅在歐盟落實，也需要各成員國及國
際發展夥伴間互相合作187
。
更明確地說，所有締約國都被要求，支持性方案的所有層面，包括從設計、執行到評估、甚至採
購過程，都要對障礙者完全開放188
。這個義務可透過立法或特定的政策公告來履行，抑或是兩者並行。
公約的第 32 條應透過第 3 條 (一般性原則) 的視角來理解，也因此，要履行責任、使發展方案對障礙
者具包容性，締約國必須確保那些用以落實公約第 32 條的相關法律與政策，能符合不歧視、可參與、
可接近等原則。
更進一步地說，公約第 32 條立下一個標準使締約國得以遵從，確保公共採購對障礙者而言可接
近也不歧視。為達此目標，締約國需確保所有的公共採購符合身障公約所訂定的義務，要讓國內的公
共採購能確實達到目的，而不是只因應國際合作的要求而設的採購機制。這與身心障礙者的支持措施
特別有關，因為許多國家並沒有確保其採購系統符合身障公約朝障礙者社會模式的典範轉移。這些國
家經常將公共基金補助給慈善或醫療團體所從事的障礙者支持服務，卻鮮少提供資金給那些依據個人
需求、致力於提供適當服務給障礙者的團體。隨著歐洲國家逐步改善身障公約所訂之權利，政府也必
須就公共採購的運用，發展出最佳實踐模式。政府建立最佳實踐模式讓私人企業及其它組織來遵循，
具有有重大價值。近期歐盟建立公共採購方針，以保障「歐盟內部市場脈絡下的公共採購。此方針乃
依據歐洲共同體條約所銘記的根本原則：平等待遇、透明與不歧視，要求競爭、互相認可、對抗詐欺

http://ec.europa.eu/social/BlobServlet?docId=4017&langId=en.
184
Gerard Quinn and Christian Courtis, Poverty, Invisibility and Disability in FREEDOM FROM POVERTY AS A HUMAN RIGHT
203, 206 (Geraldine Van Bueren, 2009),
185 CHRISTOPHER MCCRUDDEN, BUYING EQUALITY DRAFT CHAPTER,(2009), available at
http://www.michiganlawreview.org/articles/mccrudden-buying-social-justice-equality-government-procurement-and-le
gal-change.
186
187
同上註。
188
同上註。

322

和腐化」189
。此外，新的方針也要求公共採購要對障礙者具可及性190
。顯然，歐盟正在建立相關方針
讓成員國可以遵循，要求公共採購的發布能促進平等與不歧視。當同歐盟成員國發布公共採購時，須
確保對障礙者有可及性及包容性，並促進恰當的障礙者支持措施，最終達到完全的社會融合。
歐洲政府應明確捍衛以權利為本的方式來支持障礙者，公告公共採購時要對障礙者的相關組織具
可及性，也要支持那些對障礙者提供適當資源、讓他們在社區中獨立居住的服務提供者。對障礙者機
構化有所疑慮的國家層級政策 (在第 2.2.2 節中討論過) 指出，障礙者的支持系統需要重大改革。如同
先前討論過的，愛爾蘭每年花費 50 億歐元來將 4,000 名障礙者機構化191
。依據國際與區域的人權標準，
愛爾蘭政府必須改革其公共採購系統，重新分配 50 億歐元給那些提供 4,000 名障礙者支持的組織，也
讓愛爾蘭的其他身心障礙者能夠居住於社區。相同地，那些仍在主動資助機構化居住安排的政府，應
逐步轉換為提供適當支持的社區居住，以符合部長委員會的建議。更進一步，雙邊贊助者的發展政策
必須符合該建議，並追蹤開支，確保能朝向社區居住安排，而不是強化隔離性的機構居住。
2.4 結論──賦予公民權與獨立自主的機會與新方向
身心障礙者權利的計畫，不論在國際性、歐盟區域性及各國層級，均於 21 世紀迎向嶄新的一頁。
身障公約的生效，代表從原本慈善導向、被動的取向，朝向提供身心障礙者支持並明確擁抱障礙者的
平等權利，實質內容則是個別化、選擇居住安排與社區生活。身障公約與歐洲的法律及政策，喚起對
身心障礙權利的全新認識，認為那些著重在管理與維持身心障礙者的社會方案，已不再是可被接受的
架構，取而代之的是完全參與、自主與融合。下一步的挑戰，則是將障礙者的支持服務重新配置，朝
向實現障礙者的平等與人權。這樣的努力需要根本與漸進的改變，並應明確體認到，若身心障礙者及
代表他們的組織無法完全參與，那麼障礙者的平等權利必定無法實現。
身心障礙法律與政策在國際及歐洲層級的發展並不是存在於真空中。它們是更廣泛人權演進的一
部份，企圖將人權原則適用到全體人類，特別是那些長期遭遇社會經濟排除的特殊群體。在這個意義
上，身心障礙法律，與其它社會排除群體的賦權模式相互影響，包含種族與少數族裔、婦女、兒童及
窮困者。依據身障公約與歐洲法律所展現之平等與不歧視架構、及關注身心障礙者個別需求的政策，
政府及人權倡議者可應用這個模式與它所表達的原則，來發展其他受排除群體的個別天賦。
為了涵蓋公民、政治、經濟、社會與文化權利的全部範圍，身障公約朝向要讓障礙者在社區中擁
有獨立自主與完全參與的權利。就這點而言，身障公約對過去的做法與早期國際性的身心障礙者文
件，象徵著決定性的突破。這個推力轉變了原本偏好醫療照顧與復健的被動式、家長式取向，轉而大

189
EUROPA, SUMMARIES OF EU LEGISLATION, PUBLIC PROCUREMENT IN THE WATER, ENERGY, TRANSPORT AND POSTAL
SERVICES SECTORS (2004), http://europa.eu/legislation_summaries/energy/internal_energy_market/l22010_en.htm#key
(last visited August 25, 2010); Council Directive 2004/17, 2004 OJ (L134)1,14 (EC) [下文稱 Council Directive
2004/17).
190
Council Directive 2004/17，同註 179。
191
參見 O’Brien，同註 111。

323

力擁抱以權利導向提供必要的支持，這對推動完整公民權、自主與有尊嚴的生命，至關重要。身障公
約所體現的原則與標準，在本文所關注的是個別化、選擇居住安排、社區生活，這在歐洲正逐漸凝聚
為區域性與全國性的標準。歐洲許多國家及歐盟所批准的身障公約，將會進一步推動改變，促成障礙
者支持服務的現代化，使之更符合身障公約。在這個脈絡中的法律與政策，必須更進一步受到身障公
約強有力的監督，並進而刺激其改革。這不僅要透過身障公約委員會的努力，也要透過像是國家人權
機構、歐盟在身障公約的權限範圍、及歐洲議會，來加以促成。有效的監督的關鍵是必須承認，社會
權利與支持措施是要實現個別化、選擇居住安排與社區生活，並伴隨尊嚴、自主、不歧視及參與等富
有生命力的基本原則。

324

[The following is a chapter published in Andrew Power, Janet E. Lord & Allison
de Franco, Active Citizenship & Disability: Implementing the Personalization of
Support (Cambridge: Cambridge University Press, 2013)].
Supports to Persons with Disabilities in the Context of
International and Regional Disability Law and Policy
Chapter Abstract
Chapter 2 considers international as well as regional (European) law and policy frameworks that have
particular application to the rights-based provision of disability supports at the domestic level. The chapter
begins with an overview of international and regional disability law and policy that are most relevant for the
consideration of disability supports. Part 2 of the chapter examines developments in law and policy
with particular reference to the focus areas of the project, namely, personalisation, choice in living
arrangements and life in the community. Part 3 provides an analysis of law, policy and process relating to
the actual provision of supports to persons with disabilities, including public sector procurement and
competition and consumer complaints mechanisms. The chapter concludes by drawing out the implications
of international and regional disability law and policy for the ensuring that disability supports are
implemented consistent with human rights principles and directed towards fosterting full citizenship for
persons with disabilities.
2.1 Introduction
The adoption of the Convention on the Rights of Persons with Disabilities (CRPD or Convention) 192
by the United Nations (UN) General Assembly in 2006 marks the culmination of many years of work within
the UN system to place disability rights on the international agenda and to fully integrate disability issues
into the broader human rights and international development frameworks. At the same time, the adoption

* Senior Partner, BlueLaw International LLP; Research Associate, Harvard Law School Project on Disability; Adjunct
Professor of Law, University of Maryland School of Law.
** Legal Associate, Disability and Human Rights Programs, BlueLaw International LLP.
The authors wish to acknowledge the research assistance of Kelly Bunch, Esq., and Katy Carroll in the preparation of
this draft chapter.
192
UN Convention on the Rights of Persons with Disabilities, G.A. Res. 61/106, U.N. Doc. A/61/611 (Dec 13, 2006),
opened for signature Mar. 30, 2007, 46 I.L.M. 433 [hereinafter Convention or CRPD]. An Optional Protocol providing
for additional monitoring mechanisms was adopted at the same time. Optional Protocol to the Convention on the
Rights of Persons with Disabilities, opened for signature Mar. 30, 2007, 46 I.L.M. 433 [hereinafter Optional Protocol].
The CRPD text, along with its drafting history, resolutions, and updated list of signatories and States Parties is posted
on the United Nations Enable website at http://www.un.org/esa/socdev/enable/rights/convtexte.htm.

325

of the CRPD is serving as an impetus for disability law and policy reform at both domestic as well as
regional levels.193
The CRPD, as the first international human rights convention ever adopted by a regional
integration organization – the European Community – is invigorating disability rights across the Member
States of the European Union and within the institutions of the EU. A European Union Disability Strategy
2010-2020194
was adopted in 2010 and is directed at empowering persons with disabilities to fully realize
their human rights and supporting effective implementation of the CRPD consistently across the EU. These
developments are further reinforced by the work of the Council of Europe where the CRPD is already
serving to guide the interpretation of the human rights instruments adopted within the Council of Europe’s
regional human rights system.195
The adoption by the Council of Europe of a Disability Action Plan for the
period 2006-2015 also signals its efforts to include disability rights as a core part of the human rights
agenda.196
Emergence of International Standards on Disability
The starting point for any consideration of international disability rights is the emergence of modern
international human rights in the early post-World War Two period, beginning with generalized human rights
protections, as opposed to theme-specific or population-focused human rights. At the same time, disability
law and policy emerged, but were developed framed narrowly, and focused on the rehabilitation of persons
wounded during World War Two.
Beginning with general human rights provisions in the UN Charter,197
a framework emerged for the
protection of human rights through international treaties to be implemented at the domestic level. The human
rights principles and obligations set forth in the International Bill of Rights, comprising the Universal

193
See generally Janet E. Lord and Michael A. Stein, The Domestic Incorporation of Human Rights Law and the
United Nations Convention on the Rights of Persons with Disabilities, 83 U. WASH. L. REV. 449 (2008).
194
EUROPEAN UNION, EUROPEAN DISABILITY STRATEGY 2010-2020: A RENEWED COMMITMENT TO A BARRIER-FREE
EUROPE (2010), available at http://eur-lex.europa.eu/LexUriServ/LexUriServ.do?uri=COM:2010:0636:FIN:EN:PDF
195
For more on the CRPD from a European perspective, see generally Oddný Mjöll Arnardóttir & Gerard Quinn eds.,
Future Prospects for the United Nations Convention on the Rights of Persons with Disabilities, in THE UN
CONVENTION ON THE RIGHTS OF PERSON WITH DISABILITIES: EUROPEAN AND SCANDINAVIAN PERSPECTIVES (2009).
See also Anna Lawson, The UN Convention on the Rights of Persons with Disabilities and European Disability Law: A
Catalyst for Cohesion? in Arnardóttir & Quinn, id. at 103. For a helpful international and comparative law perspective
written prior to the adoption of the CRPD, see Theresia Degener & Gerard Quinn, A Survey of International,
Comparative and Regional Disability Law Reform, in DISABILITY RIGHTS LAW AND POLICY: INTERNATIONAL AND
NATIONAL PERSPECTIVES 3 (Mary Lou Breslin & Sylvia Yee eds. 2002),
196
COUNCIL OF EUROPE, COUNCIL OF EUROPE DISABILITY ACTION PLAN 2006‐2015 (2006), available at
http://www.coe.int/t/e/social_cohesion/soc%2Dsp/Rec_2006_5%20Disability%20Action%20Plan.pdf.
197
U.N. CHARTER, June 26, 1945, 59 Stat. 1031, T.S. 993, 3 Bevans 1153, entered into force Oct. 24, 1945.

326

Declaration of Human Rights,198
the International Covenant on Civil and Political Rights199
and the
International Covenant on Economic, Social and Cultural Rights,200
apply to all human beings. In time,
specialized treaties pertaining to specific populations or issues were developed, such as the Convention on
the Elimination of All Forms of Racial Discrimination201
and the Convention against Torture,202
among
others. While all of these treaties are applicable to persons with disabilities as human beings, they do not
explicitly set forth rights for persons with disabilities. They nonetheless form the foundation for
international disability law and policy. While disability was largely invisible in these early human rights
documents, where referenced, the clear thrust was not equal enjoyment of human rights or social integration
and participation, but, more narrowly, on rehabilitation, vocational training and social assistance.203
As
Professor Theresia Degener has emphasized, where disability is addressed in the human rights law “it is only
in connection with social security and preventive health policy,”204
and not as a comprehensive human rights
issue.
Beginning in the 1970s, the UN turned its attention to the drafting of non-binding standards specifically
pertaining to disability. These early efforts included the adoption of the Declaration on the Rights of
Mentally Retarded Persons205
followed by the Declaration on the Rights of Disabled Persons,206
the first
international instruments specifically addressing persons with disabilities. While the adoption of these
instruments certainly reflected an important development in terms of placing disability on the international
agenda, these were non-binding and they did little to shape national law and policy and had no monitoring
and implementation measures to facilitate national action. Moreover, they did not fully reflect – and in
some cases diverged from – existing human rights principles, as indicated in the sections that follow.207
Such

198
Universal Declaration of Human Rights, G.A. res. 217A (III), U.N. Doc A/810 at 71 (1948) [hereinafter UDHR].
199
International Covenant on Civil and Political Rights, G.A. res. 2200A (XXI), 21 U.N. GAOR Supp. (No. 16) at 52,
U.N. Doc. A/6316 (1966), 999 U.N.T.S. 171, entered into force Mar. 23, 1976 [hereinafter ICCPR].
200
International Covenant on Economic, Social and Cultural Rights, G.A. res. 2200A (XXI), 21 U.N. GAOR Supp. (No. 16)
at 49, U.N. Doc. A/6316 (1966), 993 U.N.T.S. 3, entered into force Jan. 3, 1976 [hereinafter ICESCR].
201
International Convention on the Elimination of All Forms of Racial Discrimination, G.A. Res. 2106 (XX), U.N. GAOR,
Supp. No. 14, at 47, U.N. Doc. A/6014 (1966).
202
Convention against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment, G.A. Res. 39/46,
U.N. GAOR, 39th Sess., Annex, Supp. No. 51 at 197, U.N. Doc. A/39/51 (1984).
203
The UDHR makes only one reference to disability. Article 25 provides that: “[E]veryone has the right to a
standard of living adequate for the health and well‐being of himself and his family, … and the right to security in the
event of unemployment, sickness, disability, widowhood, old age or other lack of livelihood in circumstances beyond
his control.” See UDHR, supra note 7.
204
Theresia Degener, Disabled Persons and Human Rights: The Legal Framework, in HUMAN RIGHTS AND DISABLED
PERSONS 94 (Theresia Degener & Yolan Koster‐Dreese, eds., 1995).
205
Declaration on the Rights of Mentally Retarded Persons, G.A. res. 2856 (XXVI), 26 U.N. GAOR Supp. (No. 29) at
93, U.N. Doc. A/8429 (1971). [hereinafter 1971 Declaration], art. 1; Prembl. 5.
206
Declaration on the Rights of Disabled Persons, G.A. res. 3447 (XXX), 30 U.N. GAOR Supp. (No. 34) at 88, U.N. Doc.
A/10034 (1975).
207
See generally National Council on Disability, Understanding the Role of an International Convention on the Human

327

early policy responses tended to underscore passivity and dependence. However unwittingly, they
contributed to separation and segregation, whether in education, employment or other realms, serving to
reinforce the isolation of persons with disabilities. They were clearly not directed towards the provision of
supports to enable persons with disabilities to live their lives as equal citizens.208
The designation International Year of Disabled Persons in 1981209
and the adoption of the non-binding
World Programme of Action in 1982210
adopted by the General Assembly as a means of encouraging
national level programs to achieve equality for persons with disabilities,211
provided a strong impetus for
progress on disability rights.
The Decade of Disabled Persons (1983-1992),212
culminated in the adoption of the Standard Rules on
the Equalization of Opportunities for Persons with Disabilities by the General Assembly on 4 March 1994.213
The Standard Rules are non-binding and consist of 22 rules that aim to elaborate the message of the World
Programme of Action, providing a basis for technical and economic cooperation among States, the United
Nations and other international organizations. The Standard Rules identify their purpose “to ensure that girls,
boys, women and men with disabilities, as members of their societies, may exercise the same rights and

Rights of People with Disabilities (Principal Author, Janet E. Lord, Washington D.C., 2002) [hereinafter NCD Report].
208
See Gerard Quinn, The European Social Charter and EU Anti‐Discrimination Law in the Field of Disability: Two
Gravitational Fields with One Common Purpose in SOCIAL RIGHTS IN EUROPE 279 (Grainne de Bruca and Bruno de Witte,
eds, 2005),
209
International Year of Disabled Persons, G.A. Res. 36/77, at 176, U.N. GAOR, 36th Sess., Supp. No. 77, U.N. Doc.
A/RES/36/77 (1981).
210
The World Programme is a global strategy to enhance disability prevention, rehabilitation and equalization of
opportunities. Its three chapters provide an analysis of principles, concepts and definitions relating to disabilities; an
overview of the world situation regarding persons with disabilities; and set out recommendations for action at the
national, regional and international levels. Its purpose is to promote effective measures for prevention of disability,
rehabilitation and the realization of the goals of “full participation” of persons with disabilities in social life and
development, and of “equality.” The World Programme, understood through the lens offered by the CRPD and its
general principles and stated purpose, is a hybrid instrument, combining prevention and rehabilitation with more
rights-oriented, albeit incomplete, objectives. See Implementation of the World Programme of Action Concerning
Disabled Persons, G.A. Res. 37/53, at 186-87, para. 11, U.N. GAOR, 37th Sess., Supp. No. 53, U.N. Doc. A/RES/37/53
(Dec. 3, 1982)[hereinafter World Programme of Action 1982].
211
See World Programme of Action 1982, at paras. 87-90 (providing, inter alia, that “Member States should urgently
initiate national long-term programmes to achieve the objectives of the World Programme of Action; such programmes
should be an integral component of the nation's general policy for socio-economic development.”).
212
See Decade of Disabled Persons, GA Res. 48/96, U.N. Doc. A/RES/48/96 (Mar. 4, 1993), which annexed thereto
(resolution 48/96 annex, 20 December 1993), available at
http://www1.umn.edu/humanrts/instree/disabilitystandards.html.
213
See Standard Rules on the Equalization of Opportunities for Persons with Disabilities, A/RES/48/96, 85th Plenary
Meeting 20 December 1993 [hereinafter, Standard Rules].

328

obligations as others.”214
The Rules note the existence of “obstacles preventing persons with disabilities
from exercising their rights and freedoms and making it difficult for them to participate fully in the activities
of their societies,” the “responsibility of States to take appropriate action to remove such obstacles” and the
role of persons with disabilities and their organizations in the removal of barriers.215
The core concept
referenced within the section outlining the purpose and objectives of the Standard Rules is the “equalization
of opportunities for persons with disabilities” which is identified as “an essential contribution in the general
and worldwide effort to mobilize human resources.”216
Both the World Programme of Action and the Standard Rules emphasize the right of persons with
disabilities to the same opportunities as other citizens and to an equal share in the improvements in living
conditions resulting from economic and social development. They do not, however, embrace a consistent
and coherent human rights approach to disability anchored in core human rights principles of, inter alia,
non-discrimination, participation, inclusion, autonomy.
Consensus started to emerge at the close of the last century among those working in the fields of
disability and international human rights law that the international human rights framework was, in the
context of disability, lacking in several fundamental respects. 217
There was no instrument that
comprehensively and with specificity focused on the barriers that persons with disabilities experienced in
accessing their human rights and many governments remained unaware of their legal obligations.218
Notably, the Office of the High Commissioner for Human Rights issued a pivotal study authored by
Professors Gerard Quinn and Theresia Degener demonstrating that the existing UN human rights
treaty-monitoring bodies only marginally addressed, if at all, the routine human rights violations to which
persons with disabilities were subjected.219
Development of Disability-Specific Human Rights Treaty
In 2001, an initiative to develop a legally binding treaty on the human rights of persons with disabilities
was launched by Mexico, following the UN’s effort to include disability as part of the Platform of Action
adopted at the World Conference against Racism in Durban, South Africa. In the General Assembly that
year, Mexico proposed a resolution calling for the establishment of an Ad Hoc Committee mandated with
elaborating “a comprehensive and integral international convention to promote and protect the rights and
dignity of persons with disabilities, based on the holistic approach of the work done in the field of social

214
Id. at 15.
215
Id.
216
Id.
217
See especially GERARD QUINN & THERESIA DEGENER, HUMAN RIGHTS AND DISABILITY: THE CURRENT USE AND FUTURE POTENTIAL OF
UNITED NATIONS HUMAN RIGHTS INSTRUMENTS IN THE CONTEXT OF DISABILITY 1 (2002), available at
http://www.nhri.net/pdf/disability.pdf. Two expert seminars on international norms and standards on disability were
held in 1998 and 1999 in Berkeley and Hong Kong, respectively, and gave serious consideration to the need for a
legally binding convention on the rights of persons with disabilities. Id.
218
See generally NCD Report, supra note 16.
219
See generally Quinn and Degener, supra note 26.

329

development, human rights and non-discrimination.”220
The resolution was adopted and launched the
establishment of the Ad Hoc Committee which met for the first time in 2002. The Committee met for a
total of eight sessions at UN headquarters in New York and adopted a final text in August 2006.221
Thereafter, the text was submitted for adoption by the whole General Assembly which occurred on
December 13, 2006.
The text of the CRPD is comprised of twenty-five preambular paragraphs and fifty Articles.222
The
aim of the drafters was not to create “new” rights, rather, the goal was to specify human rights as they apply
specifically to persons with disabilities. In other words, the CRPD takes existing human rights obligations
and makes clear their relationship to the lives of persons with disabilities. Structurally, the CRPD includes
an introductory set of provisions that outline its purpose (Article 1) and key definitions (Article 2), along
with articles of general (cross-cutting) application, to be applied across the treaty text (Articles 3 to 9).
The general obligations of States Parties are specified in Article 4 of the Convention which requires
that States Parties undertake measures to ensure and promote the full realization of all human rights and
fundamental freedoms for all persons with disabilities without discrimination of any kind on the basis of
disability. In relation to economic, social and cultural rights, States Parties are obliged to take measures to
realize these rights progressively to the maximum extent of available resources. Article 4 obliges States

220
See Comprehensive and Integral International Convention to Promote and Protect the Rights and Dignity of Persons
with Disabilities, G.A. Res. 56/168, U.N GAOR, 56th Sess., Supp. No. 168, U.N. Doc. A/RES/56/168 (Dec. 19, 2001).
A detailed description of the political process behind the United Nations decision to go forward with a disability human
rights convention is set forth in the National Council on Disability, Newsroom, UN Disability Convention--Topics at a
Glance: History of the Process, available at http:// www.ncd.gov/newsroom/publications/2003/history_process.htm.
Following the adoption of a General Assembly resolution calling for the establishment of a committee to consider
proposals for the elaboration of a human rights treaty on the rights of persons with disabilities, an “ad hoc” committee
was established and met for the first time in July 2002. “Ad hoc” simply connotes a body established for a particular
purpose for time bound period, as opposed to bodies that operate under the General Assembly for an indefinite period of
time.
221
For more on the CRPD negotiation process, see Rosemary Kayess & Phillip French, Out of Darkness into Light?
Introducing the Convention on the Rights of Persons with Disabilities, 8 HUM. RTS. L. REV. 1 at 15 (2008); Janet E.
Lord, Mirror, Mirror on the Wall: Voice Accountability and NGOs in Human Rights Standard Setting, 5 SETON HALL J.
DIPL. & INT’L REL. 93 (2004).
222
For comprehensive overviews of the CRPD, see generally Michael Ashley Stein & Janet E. Lord, Future Prospects
for the United Nations Convention on the Rights of Persons with Disabilities, in THE UN CONVENTION ON THE RIGHTS
OF PERSON WITH DISABILITIES: EUROPEAN AND SCANDINAVIAN PERSPECTIVES (Oddný Mjöll Arnardóttir & Gerard
Quinn eds. 2008); Michael A. Stein & Janet E. Lord, The United Nations Convention on the Rights of Persons with
Disabilities: Process, Substance, and Prospects in INTERNATIONAL HUMAN RIGHTS LAW IN A GLOBAL CONTEXT 495
(Felipe Gomez Isa and Koen de Feyter, eds., 2008).

330

Parties to: (i) adopt legislative, administrative and other measures to implement Convention rights; (ii)
abolish or amend existing laws, regulations, customs and practices that discriminate against persons with
disabilities; and (iii) adopt an inclusive approach to protect and promote the rights of persons with
disabilities in all policies and programmes. Crucially for the provision of disability supports, Article 4
requires States Parties to refrain from conduct that violates CRPD obligations and ensure that the public
sector respects the rights of persons with disabilities. Moreover, States Parties must take measures to
abolish disability discrimination by persons, organizations or private enterprises. In addition, States must
undertake research and development of accessible goods, services and technology for persons with
disabilities and to promote others to undertake such research; provide accessible information about assistive
technology to persons with disabilities; promote professional and staff training on Convention rights for
those working with persons with disabilities on the Convention; and consult with and involve persons with
disabilities in developing and implementing legislation and policies and in decision-making processes
concerning persons with disabilities. This last provision lies at the heart of the CRPD’s mandate that
implementation requires the full participation by persons with disabilities and their representative
organizations.
Following the articles that apply transversally, or across the treaty, the CRPD sets forth specific
substantive rights covering civil, political, economic, social and cultural rights (Articles 10 to 30). Finally, it
establishes a system of monitoring and implementation (Articles 31 to 40) and includes final provisions that
govern the operation of the CRPD (Articles 41 to 50). Significantly for fostering disability rights advocacy,
several provisions require active consultations with stakeholders and apply the participation norm to all
aspects of implementation, including the requirement that participation be effectuated in all law, policy and
programming decisions (Article 4(3) CRPD). A Committee on the Rights of Persons with Disabilities—the
CRPD’s treaty monitoring body—is tasked with monitoring implementation in States Parties through its
oversight of the mandatory reporting requirement and through the issuance of recommendations. An
Optional Protocol223
to the CRPD, comprised of eighteen Articles, gives the Committee competence to
examine individual complaints with regard to alleged violations of the Convention by States Parties to the
Protocol. Its purpose is to allow States Parties to opt into participation in individual and group
communications procedures, as well as an inquiry procedure, all of which are overseen by the Committee.
International & Domestic Legal Status of CRPD
At the time of this writing, 90 States have ratified the CRPD224
and 56 have ratified the Optional
Protocol.225
Sixteen States within the EU have ratified the CRPD and 23 States within the Council of

223
Optional Protocol, supra note 1.
224
UNENABLE, CONVENTION AND OPTIONAL PROTOCOL SIGNATURES, COUNTRIES AND REGIONAL INTEGRATION ORGANIZATIONS,
http://www.un.org/disabilities/countries.asp?navid=12&pid=166 (last visited August 21, 2010)
225
Id.

331

Europe.226
The CRPD has been signed, and the decision taken to conclude it, by the European Community
(EC) under the EC Treaty. The CRPD requires the regional integration organizations to declare their
competence in the areas covered by the Convention and, accordingly, Council Decision 2010/48/EC on the
conclusion of the CRPD sets out specific EC instruments that demonstrate the Community’s relevant fields
of activity.227
International human rights standards are designed to be implemented at the domestic level.228
As a
general matter, ratifying States (as well as regional integration organizations such as the EU) are expected to
give legal effect to assumed treaty obligations and the CRPD sets forth general parameters for
implementation at the domestic level.229
The process by which they become part of the domestic law
framework varies from country to country.230
In some States, including for example, Croatia, Hungary,
Slovenia and Spain, the provisions of a human rights convention, including the CRPD, have direct legal
effect on the national legal framework and are thus in theory directly applicable, including in courts of law.231
By contrast, in other States, including the United Kingdom, Australia and Belgium, the international and
national legal systems are regarded as separate and distinct legal spheres. In these countries, international
human rights treaties to which the State is a party have no automatic legal force as a matter of domestic law,
rather, domestic legislation must be adopted to incorporate the treaty into the domestic legal order.
In terms of the CRPD becoming part of the domestic law framework, Ireland presents an interesting

226
Id.
227
Areas of competence identified in the Decision include non‐discrimination, employment, accessibility,
international cooperation, statistic and data collection and monitoring. The competence of the EC is evolving and
thus additional areas of competence may indeed emerge over time. Council Decision 2010/48/EC.
228
THOMAS BUERGENTHAL, DINAH SHELTON, AND DAVID STEWART, INTERNATIONAL HUMAN RIGHTS 347 (2d ed.,
2002).
229
In order for a treaty to have domestic legal effect, an act of government is frequently required whereby the treaty
norm is incorporated into its domestic law. Such legal systems are considered “dualist” in nature, in contrast with
monist systems where the State’s legal system is considered to include international treaties without the need for
separate, domestic level action.
230
There is an extensive literature on the domestic incorporation of human rights standards and the processes by which
this occurs. See, e.g., Antonio Cassesse, Modern Constitutions and International Law, 192 HAGUE RECUEIL DES COURS
331 (1985); THE EFFECTS OF TREATIES IN DOMESTIC LAW (F.G. Jacobs and S. Roberts, eds., 1987); Ignaz
Seidl-Hohenveldern, Transformation or Adoption of International Law Into Municipal Law, 12 INT’L & COMP. L.Q. 88
(1963); Luzius Wildhaber & Stephan Breitenmoser, The Relationship between Customary International Law and
Municipal Law in Western European Countries, 48 Z.A.O.R.V. 163 (1988); Rosalyn Higgins, United Kingdom, in THE
EFFECTS OF TREATIES IN DOMESTIC LAW 123, 124-25 (F.G. Jacobs & S. Roberts, eds., 1987).
231
For a detailed analysis, see Anthony Aust, Modern Treaty Law and Practice (Cambridge University Press, 2006), pp.
146 and 150. For a discussion that relates specifically to the incorporation of the CRPD into domestic law, see Office of
the High Commissioner for Human Rights, Thematic Study by the Office of the United Nations High Commissioner for
Human Rights on enhancing awareness and understanding of the Convention on the Rights of Persons with Disabilities,
UN Doc. A/HRC/10/48, 26 Jan. 2009.

332

example to review as it signed the CRPD on March 30, 2007,232
but has not ratified it due to concerns
about compliance at the domestic level.233
Ireland’s ratification efforts are coupled with moves to reform
domestic disability laws so that Ireland is in full compliance with the CRPD prior to ratification.234
Similarly, the United States applies an exceedingly strict threshold for ratification, with the State Department
undergoing a long and intensive cross-agency review process to assess compliance before the president
submits the treaty to the US Senate for its advice and consent which is contingent on ratification. As a
result, and partly due to American parochialism when it comes to international treaties in general, the US has
the poorest ratification record of all industrialized states.235
The section that follows concentrates on the guiding principles emerging from international and
European disability rights law that have particular relevance to the three focus areas of this study.
2.2 Guiding principles in international & regional disability law and policy
General principles that animate and inform international and regional disability law and policy
frameworks are important tools in shaping the progressive development of disability supports in advancing
disability inclusive citizenship. The starting point for considering general principles in international
disability law is the CRPD, and particularly the provision in Article 3 (General principles). European
regional instruments likewise inform the design and provision of disability supports and express principles
that should be reflected in domestic disability law and policy. Three core focus areas forming the centrepiece
of the present study – personalisation, choice in living arrangements, and life in the community, are strongly
affirmed in the CRPD. These three areas together define a new paradigm in disability policy in which

232
An updated list of signatories and States Parties to the CRPD is posted on the United Nations Enable website,
supra note 1.
233
Ellinoir Flynee, Ireland’s Compliance with the Convention on the Rights of Persons with Disabilities: Towards a
Rights-Based Approach for Legal Reform?, 31 DUBLIN U. L. J. 357 (2009); Gerard Quinn, Centre for Disability Law
and Policy at the NUI Galway School of Law, The United Nations Convention on the Rights of Persons with
Disabilities as an Engine of Domestic Law Reform, Presentation given to Conference of States Parties to the
Convention on the Rights of Persons with Disabilities (Oct. 31, 2008), available at
http://www.un.org/disabilities/images/Message%20G%20Quinn%20COP.doc.
234
“The enactment of the Mental Capacity Bill has already been recognised as a reform which is necessary to
facilitate Ireland’s ratification of the Convention.” Flynee, supra note 42, at 357.
235
The United States has ratified only three of twenty‐six international human rights treaties. For more on the US
policy of ratification of human rights treaties and the CRPD in particular, see Janet E. Lord & Michael Ashley Stein,
Ratify the UN Disability Treaty, FOREIGN POLICY IN FOCUS (July 9, 2009), available at http://www.fpif.org/fpiftxt/6247.
See also Janet E. Lord & Michael Ashley Stein, The Law and Politics of US Participation in the UN Convention on the
Rights of Persons with Disabilities in EXPLAINING THE SILENCE: HUMAN RIGHTS IN THE UNITED STATES (Shareen Hertel & Kathryn
Libal eds., 2011).

333

citizens with disabilities live independently with choice and control over their supports to achieve full social
and economic participation. The section that follows provides an overview of these principles and how they
apply to personalisation, choice in living arrangements, and life in the community. It also considers the
application of these principles to the process of support provisions for persons with disabilities.
General principles have an important role in international treaties generally, and in the CRPD in
particular. Article 3 identifies the Convention’s general principles which include respect for individual
dignity, autonomy, and independence; respect for difference and acceptance of disability as human diversity;
non-discrimination; equal opportunity; complete and meaningful participation; accessibility; sexual equality;
respect for children’s rights and support of their evolving capabilities.236
These general principles are to be
applied in the drafting of national disability laws and in the formulation of national level disability policies
and should also inform programming and the process of decision-making, monitoring and implementation.
The inclusion of a general principles article is an innovation that serves to guide the interpretation of the
entire text of the treaty.237
The general principles set forth in Article 3 firmly anchor the CRPD text in human rights, an important
distinction which differentiates the CRPD from all other disability-specific instruments but also, notably,
places the CRPD alone among all other core human rights conventions which do not specifically articulate
general principles.238
Through its placement in the articles of general and cross-cutting application, the
drafters defined the fundamental principles that must guide the interpretation and application of all of the
provisions in the CRPD. Notably, for the purposes of this study, the CRPD outlines a framework which
requires disability supports to be specifically targeted to reflect and advance the core principles of autonomy,
inclusion and participation and to achieve the objectives of securing human independence and full
citizenship.
Principles set forth in European instruments on disability correspond in large part to
those reflected in the CRPD. The European Commission first gave expression to the principles contained in
the UN Standard Rules in its Green Paper of 1993 concerning social policy where it emphasized that
“[s]ocial segregation, even with adequate income maintenance and special provision, is contrary to human

236
See CRPD, supra note 1, at art. 3 (a), (b), (c), (d), (e), (f), (g), (h).
237
The CRPD is the first international human rights convention to include a provision outlining general principles.
For more on the important role of general principles in human rights treaties, see Lord & Stein, The Domestic
Incorporation of Human Rights Law and the United Nations Convention on the Rights of Persons with Disabilities, 83 U.
WASH. L. REV. 449 (2008).
238
It should be noted that the treaty committees have elicited general principles to guide the interpretation of human
rights treaties, even though they do not have specific provisions outlining general principles. For example the
Committee on the Rights of the Child has identified four main principles to guide its interpretation of the CRC. These
include: Article 2 (non‐discrimination); Article 3(1) (best interests of the child); Article 6 (right to life and maximum
possible survival and development); and Article 12 (respect for the views of the child and participation). Convention
on the Rights of the Child, G.A. Res. 44/25, Annex, 44 U.N. GAOR Supp. (No. 49) at 167, U.N. Doc. A/44/49 (1989),
entered into force Sept. 2, 1990.

334

dignity and corrosive of social solidarity and community morale.”239
Gerard Quinn has emphasized the
significance of this shift in recognizing that “money alone is not a sufficient answer unless linked to a
rights-based reform agenda” and that even expansive funding, if pursued without rights-based principles of
participation, inclusion and accessibility, is not an acceptable approach. In 1996, the European
Commission set out a clear vision of equal opportunities for persons with disabilities in Equality of
Opportunities for People with Disabilities - A New Community Disability Strategy.240
The European
Disability Strategy, adopted in 2010, provides further impetus for realizing the rights of persons with
disabilities and recognizes that:
There are still many obstacles preventing people with disabilities from fully exercising their
fundamental rights - including their Union citizenship rights - and limiting their participation in
society on an equal basis with others. Those rights include the right to free movement, to choose
where and how to live, and to have full access to cultural, recreational, and sports activities.241
The Council of Europe has likewise been involved in disability issues, influenced early on by the large
population of persons who acquired a disability during World War Two. Early activities focused on
rehabilitation, similar to narrowly focused domestic disability frameworks in both Europe and North
America. The first coherent statement of the Council’s disability policy was Recommendation R (92),
adopted in 1992, following a Ministerial Conference in Paris.242
A second Council of Europe Ministerial
Conference was held in Malaga in 2003 and resulted in the Malaga Political Declaration which identifies as a
main aim “to improve the quality of life of people with disabilities and their families, putting emphasis on
their integration and full participation in society, since a participative and accessible society is of benefit to
the whole population.”243
Significantly, the Malaga Declaration embraced an approach directed at working
“within anti-discriminatory and human rights frameworks towards mainstreaming quality of opportunity for
people with disabilities throughout all policy areas.”244

239
Green Paper on European Social Policy – Options for the Union, Brussels, COM (93), November
1993, 551 at 48.
240
Communication of the Commission on Equality of Opportunity for People with Disabilities – a
New European Community Disability Strategy, Brussels, COM (96) 406, final, 30.07.1996.
241
European Disability Strategy, supra note 3 at p. 5, section 2.1.2.
242
Council of Europe, Recommendation R (1992), A Coherent Policy for the Rehabilitation of People with Disabilities,
available at http://www.handicapincifre.it/allegati/RECOMMENDATION_R%2892%296.htm.
243
Political Declaration of the Second Ministerial Conference of Ministers Responsible for Integration Policies for
People with Disabilities, 7‐8 May 2004, Malaga, Spain, available at
http://www.coe.int/T/E/Social_Cohesion/soc‐sp/Integration/.
244
Id. at para. 17.

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Of particular relevance for ensuring that disability supports are implementing in keeping with human
rights in Europe is the Council of Europe’s work in the area of social rights. The original European Social
Charter of 1961,245
was very much a product of its time and reflected the prevailing rehabilitation model of
disability:246
Article 15 - The right of physically or mentally disabled persons to vocational training,
rehabilitation and social resettlement
With a view to ensuring the effective exercise of the right of the physical or mentally disabled to
vocational training, rehabilitation and resettlement, the Contracting Parties undertake:
1. To take adequate measures for the provision of training facilities, including, where
necessary, specialized institutions, public or private;
2. To take adequate measures for the placing of disabled person in employment, such as
specialized placing services, facilities for sheltered employment and measures to
encourage employers to employment.
The recently Revised European Social Charter247
(Article 15) takes a decidedly different turn, reflecting
as it does the social model of disability and a rights-oriented approach that seeks to ensure the right of
persons with disabilities to “independence, social integration and participation in the life of the
community.”248
Article 15 is tellingly re-named “the right of persons with disabilities to independence,
social integration and participation in the life of the community” and its provisions are more comprehensive
and rights-based that the previous articulation of 1961.

245
European Social Charter, Turin, 18.X.1961. European Treaty Series (ETS), No. 35.
246
See Quinn, supra note 17 at 279.
247
European Social Charter (Revised), May 3, 1996, CETS 163 [hereinafter, European Social Charter], available at
http://www.unhcr.org/refworld/docid/3ae6b3678.html. For an important overview of the European disability rights
framework, see COUNCIL OF EUROPE, COMMISSIONER FOR HUMAN RIGHTS, HUMAN RIGHTS AND DISABILITY: EQUAL RIGHTS FOR ALL,
(2008), available at
248
European Social Charter, supra note 56, at art. 15. There are a number of Council of Europe publications in the
field of disability. See, e.g., Council of Europe, Rehabilitation and Integration of People with Disabilities (2003);
Assessing Disability in Europe—Similarities and Differences (2002); Access to Social Rights for People with
Disabilities in Europe (2003); Legislation to Counter Discrimination against Persons with Disabilities (2003);
Discrimination against Women with Disabilities (2003); Safeguarding Adults and Children with
Disabilities against Abuse (2003).

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While the European Convention for the Protection of Human Rights and Fundamental Freedoms249
does not explicitly identify disability as a prohibited ground of discrimination, nonetheless, the jurisprudence
of the European Court applies non-discrimination to persons with disabilities in a succession of cases and,
more recently, embraces principles of the CRPD as part of its interpretive lens.250
European instruments
likewise advance non-discrimination as an overarching principle as reflected in the Charter of Fundamental
Rights of the European Union251
(Article 21) and the Treaty of Amsterdam (Article 13).252
2.2.1 Personalisation
The CRPD defines, both through its general principles and specific substantive obligations, a framework
within which to understand the concept of personalisation and operationalises it in both law and policy. At
its core, the concept of personalisation reflects a move away from passive, paternalistic provision of services
for persons with disabilities and an embrace of individual decision-making and autonomy driven by active
participation and recognition of legal capacity, together with the provision of supports to promote and
facilitate agency and informed decision-making and individualized self-determination. Accordingly, under
the human rights model reflected in the CRPD, the focus is on basic concepts of justice and human dignity
whereby persons with disabilities are empowered to realize their basic needs as a matter of claimed rights,
rather than as received charity.253
Respect for inherent dignity, individual autonomy and independence of persons
Article 3 of the CRPD includes as the first enumerated general principle “respect for inherent dignity,
individual autonomy including the freedom to make one’s own choices, and independence of persons.”254

249
European Convention for the Protection of Human Rights and Fundamental Freedoms, Nov. 4, 1950, 213 U.N.T.S.
222 [hereinafter ECHR].
250
See, e.g., Alajos Kiss v. Hungary, Eur. Ct. H.R. Application No. 38832/06, 20 May 2010 (holding that the automatic
disenfranchisement of a person under guardianship from exercising his right to vote was a violation of the European
Convention and that the State had to provide weighty reasons when applying a restriction on fundamental rights to a
particularly vulnerable group, such as persons with mental disabilities and citing the relevance of the CRPD).
251
Charter of Fundamental Rights of the European Union, 2000 O.J. (C 364) 1 [hereinafter
EU Charter], available at: http://www.unhcr.org/refworld/docid/3ae6b3b70.html.
252
Treaty of Amsterdam, Oct. 2, 1997, 1997 O.J (C 340)1 [hereinafter Treaty of Amsterdam].
253
The UN High Commissioner for human rights emphasized this shift to a rights‐oriented perspective on the
adoption of the CRPD in December 2006. See UN High Commissioner for Human Rights, Statement by UN High
Commissioner for Human Rights on Convention on Rights of Persons with Disabilities, delivered at the adoption of the
convention in December 2006 (Dec. 6, 2006), available at
http://www.ohchr.org/English/issues/disability/docs/statementhcdec06.doc. (noting that the CRPD dismisses the
understanding of persons with disabilities as “objects of charity, medical treatment and social protection” and instead
reaffirms that persons with disabilities are “subjects of rights, able to claim those rights as active members of
society.”).
254
CRPD, supra note 1, at art. 3(a).

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While the terms “respect for inherent dignity,” “individual autonomy” and “independence of persons” are not
specifically defined in the CRPD, together they encompass the overall thrust of the CRPD, namely, that
persons with disabilities, as human beings, have the right to all fundamental human rights and freedoms
which protect human dignity and autonomy. In that sense, therefore, they express the concept of
personalisation.
The reference to “respect for inherent dignity” in the CRPD echoes the preamble to the Universal
Declaration of Human Rights which emphasizes that “recognition of the inherent dignity and of the equal
and inalienable rights of all members of the human family is the foundation of freedom, justice, and peace in
the world.”255
The European Court of Human Rights has recognized human dignity and human freedom as
“the very essence of the Convention.”256
The Court has also stated that the Convention “must be
understood and interpreted as a whole [and that it forms] an integrated system for the protection of human
dignity.”257
Similarly the EU Charter of Fundamental Rights recognizes that the Union is founded on the
“universal values of human dignity, freedom, equality and solidarity.”258
The notion of individual autonomy, including the freedom to make one’s own choices, is closely
aligned with the concept of individual self-determination, a term used frequently within the context of the
CRPD negotiations.259
While human rights treaties do not utilize the term “individual self-determination”
or autonomy, nonetheless there is recognition of the term in human rights practice, including in the
jurisprudence of the European Court of Human Rights.260
In addition, in its General Comment on Persons
with Disabilities, the Committee on Economic, Social and Cultural Rights—the body that monitors the
International Covenant on Economic, Social and Cultural Rights— recommends the enactment and
implementation of anti-discrimination legislation and social-policy programmes, which enable persons with

255
UDHR, supra note 7 at prmbl.
256
See, e.g., Pretty v United Kingdom App. No. 2346/02, 29 April 2002, para. 65.
257
See Refah Partisi and others v. Turkey of 31 July 2001, Application no. 41340/98, para.43.
258
See EU Charter of Fundamental Rights of 2000. It should also be noted that the EU Charter of Fundamental
Rights is divided into six chapters on material rights. Chapter One on Human Dignity covers the rights to dignity, life,
integrity and the prohibitions against torture and forced labour.
259
The term “individual autonomy” was preferred, apparently because the concept of self‐determination under
international law carries with it a particular meaning – the idea of group self‐determination. The literature on the
self‐determination of peoples, springs principally from Article 1 of both Covenants which provide that “all peoples
have the right to self‐determination.” See ICCPR & ICESCR, supra notes 8 & 9 at art. 1. See generally Antonio
Cassesse, Self‐Determination of Peoples (1995); James Crawford, ed., The Rights of People (1988); P. Thornberry,
Self‐Determination, Minorities, Human Rights: A Review of International Instruments, 38 INT’L & COMP. L. Q. 867
(1989).
260
See, e.g., Pretty v. United Kingdom, para. 61. (“[T]hough no case has established as such any right to
self‐determination as being contained in Article 8 of the Convention, the Court considers that the notion of personal
autonomy is an important principle underlying the interpretation of the Convention.”). Id.

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disabilities “to live an integrated, self-determined and independent life.”261
The (Revised) European Social
Charter and the Charter of Fundamental Rights of the European Union recognize a right to measures
designed to ensure “independence, social (and occupational) integration and participation in the life of the
community.”262
The (Revised) European Social Charter263
provides important guidance on personalisation
in the context of disability support provisions.264
As noted above, Article 15 calls for States “to take the
necessary measures to provide persons with disabilities with guidance, education and vocational training in
the framework of general schemes wherever possible” and, in relation to the provision of support services,
they are to be directed toward the promotion of “social integration and participation in the life of the
community.”.265
Human rights jurisprudence reflected in international as well as regional human rights courts and
tribunals accepts the principle of autonomy as a founding principle of human rights. Although the European
Court of Human Rights has not explicitly found a right to personal autonomy or self-determination in the
Convention, it has on numerous occasions stated that it considers the notion of personal autonomy to be an
important principle underlying the interpretation of the guarantees contained in the European Convention of
Human Rights.266
The concept of personal autonomy has been taken to embrace broad protections,
including the right to establish details of one’s identity as a human being, the right to make choices over
her/his own body, the right to privacy and the freedoms of thought, conscience and religion.267

261
General Comment No. 5, Persons with disabilities (Eleventh session, 1994), U.N. Doc E/1995/22 at 19 (1995),
reprinted in Compilation of General Comments and General Recommendations Adopted by Human Rights Treaty
Bodies, U.N. Doc. HRI/GEN/1/Rev.6 at 24 (2003), available at
http://www1.umn.edu/humanrts/gencomm/epcomm5e.htm.
262
European Social Charter, supra note 56, art. 15; EU Charter, art. 26. The EU Charter includes ‘occupational
integration’.
263
European Social Charter, supra note 56; For an important overview of the European disability rights framework,
see Commissioner for Human Rights, Human Rights and Disability: Equal Rights for All (Council of Europe, Issue
Paper, Oct. 2008), available at
264
European Social Charter, supra note, at art. 15; See also Marc Maudient, Access to Social Rights for People with
Disabilities (2003); Council of Europe, Social security as a human right - The protection afforded by the European
Convention on Human Rights (Human Rights Files No. 23) (2007).
265
European Social Charter, supra note 56, art. 15.
266
See Jill Marshall, Personal Freedom through Human Rights Law? Autonomy, Identity and Integrity under the
European Convention on Human Rights, 10 HUMAN RIGHTS LAW REVIEW 391‐394 2010.
267
See, e.g., H.F. v. Slovakia, ECHR, App. No. 54797/00, judgment 8 November 2005 (Domestic court deprived
Applicant of her legal capacity on the basis that she had chronic paranoid schizophrenia and was incapable of entering
into legal transactions or managing her affairs. The court had not heard evidence from Applicant but relied in its
decision on an old psychiatric report and on statements by her ex-husband and his witnesses. Applicant appealed, and
without hearing evidence from her or ordering further psychiatric reports, the domestic court rejected her appeal. The

339

Participation and inclusion
The CRPD recognizes participation and inclusion as a general principle which is in keeping with the
general trend of international treaty bodies to underscore that the right to participate in decision-making is to
be understood in broad terms.268
The CRPD elaborates on the right of persons with disabilities to participate
in the political life of their societies and provides specific guidance to States on implementing this right.
Participation in the context of the CRPD extends beyond voting - though this aspect is expressed in Article
29 of the CRPD - and encompasses the right of persons with disabilities to participate in decision-making
processes where their interests are affected, on an equal basis with others. Thus, the significance of the
principle of participation in Article 3 and as applied and in some instances specifically expressed throughout
the CRPD is not only that persons with disabilities should be accorded the right to express their views freely,
but also that they have the right to be heard and that their views should be accorded due weight.269
This is
central to the concept of personalisation and has important implications for the terms upon which providers

ECHR found in favor of the applicant.)
268
The right to participate in political processes is a well-established principle of human rights law and is expressed in
Article 21 of the UDHR.
“(1) Everyone has the right to take part in the government of his country, directly or through freely chosen
representatives.
(2) Everyone has the right of equal access to public service in his country.
(3) The will of the people shall be the basis of the authority of government; this will shall be expressed in periodic and
genuine elections which shall be by universal and equal suffrage and shall be held by secret vote or by equivalent free
voting procedures.”
UDHR, supra note 7, at art 21, available at http://www.unhchr.ch/udhr/.
In addition, Article 25 of the International Covenant on Civil and Political Rights (ICCPR) provides that–
[E]very citizen shall have the right and the opportunity… without reasonable restrictions…to vote and to be
elected at genuine periodic elections which shall be universal and equal suffrage and shall be held by secret
ballot, guaranteeing the free expression of the will of the electors
ICCPR, supra note 8, at art, 25, available at http://www.unhchr.ch/html/menu3/b/a_ccpr.htm.
269
This is in keeping with the development of the concept of participation generally in human rights law and likewise
with regard to its specific application in the Convention on the Rights of the Child. See, for example, the statement
in the Manual on Human Rights Reporting which comments on Article 12 of the CRC:
This article sets one of the fundamental values of the Convention and probably one if its basic challenges. In
essence it affirms that the child is a fully‐fledged person having the right to express views in all matters
affecting him or her, and having those views heard and given due weight. Thus the child has the right to
participate in the decision making process affecting his or her life, as well as to influence decision taken in his
or her regard…At first sight it might be considered that Article 12 is basically addressing the same reality as
Article 13 on freedom of expression and information. It is true that they are closely connected. But the fact
they were both incorporated in the Convention and coexist in an autonomous manner, has to be interpreted
as to mean that, while article 13 recognizes in a general way freedom of expression, article 12 should prevail
in all those cases where the matters at stake affect the child, while stressing the right of the child to be head
and for the child’s views to be taken into account.
United Nations, Manual on Human Rights Reporting at 426.

340

offer their support. Consultation with persons with disabilities and their representative organizations is
critical in the design, implementation, monitoring and evaluation of disability support service provision.
Respect for difference and acceptance of disability as human diversity
The principle of “respect for difference and acceptance of persons with disabilities as part of human
diversity and humanity” in Article 3 is not defined in the CRPD, nor does it attach to existing human rights
convention terminology, and yet it clearly expresses the values that underpin the CRPD and human rights
law more generally.270
It seems to acknowledge, for example, a basic idea of human rights law that
individuals with disabilities are active subjects of human rights, as opposed to objects to be acted upon.
Moreover, in recognizing disability as a natural part of human diversity and in underscoring respect and
indeed acceptance— as opposed to the lower threshold of tolerance— of difference, the provision seems an
affront to conceptualizations of disability conveying paternalism, pity, charity and the like.
Respect for the evolving capacities of children with disabilities
Article 3 of the CRPD recognizes as a general principle “respect for the evolving capacities of
children with disabilities” and thus requires that the human rights and fundamental freedoms set out in the
Convention must be interpreted and applied in a manner that recognises and accommodates the development
of children with disabilities towards adulthood and independence. The concept of “evolving capacities of
children with disabilities” is thus directed towards facilitating the exercise of personal autonomy in
decision-making. The second aspect of Article 3(h) references “respect for the right of children with
disabilities to preserve their identities” and is directed towards ensuring that children with disabilities are
legally recognised as persons and that their identity is preserved. The concept was drawn from the
Convention on the Rights of the Child (CRC) and reflects “an acknowledgement that children’s development
towards independent adulthood must be respected and promoted throughout childhood.”271
Moreover, the
idea is closely linked to the principle of participation, especially Article 12 of the CRC which requires that
the views of children shall be given “due weight in accordance with the age and maturity of the child.”272
In
this regard it links to the recognition accorded in the CRPD of legal capacity, together with the requirement
that appropriate supports be provided to facilitate decision-making. As applied to disability supports, it
requires not only support in keeping with the best interests of the child, but meaningful participation and
consultation.
Equality and Non-discrimination and the Duty to Accommodate
Equality and non-discrimination are core principles of disability rights law, both at the international

270
CRPD, supra note 1, at art. 3.
271
Id.
272
Convention on the Rights of the Child, G.A. res. 44/25, annex, 44 U.N. GAOR Supp. (No. 49) at 167, U.N. Doc.
A/44/49 (1989), entered into force Sept. 2, 1990, art. 12.

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as well as national levels. The adoption of the CRPD brings into the modern human rights law framework a
robust disability discrimination and equality dimension that was implicitly and perhaps incompletely
captured in earlier adopted human rights conventions. Moreover, the CRPD is serving to advance the
development and reform of disability discrimination law domestically around the world.273
Article 5(1) of the CRPD affirms that “all persons are equal before and under the law and are entitled
without any discrimination to the equal protection and equal benefit of the law.”274
Article 5(2) obliges
States Parties to “prohibit all discrimination on the basis of disability.”275
Disability discrimination is
defined in Article 2 to mean:
[A]ny distinction, exclusion or restriction on the basis of disability which has the purpose or effect of
impairing or nullifying the recognition, enjoyment or exercise, on an equal basis with others, of all
human rights and fundamental freedoms in the political, economic, social, cultural, civil or any other
field. It includes all forms of discrimination, including denial of reasonable accommodation.276
In addition, Article 5(3) requires that States parties take steps to ensure that reasonable accommodations are
provided.277
The concept of reasonable accommodation, which was initially expressed in the domestic
disability law of the United States,278
is defined in the CRPD in Article 2 as:
[N]ecessary and appropriate modification and adjustments not imposing a disproportionate or undue
burden, where needed in a particular case, to ensure to persons with disabilities the enjoyment or
exercise on an equal basis with others of all human rights and fundamental freedoms.279
The integration of reasonable accommodation into the formal definition of disability discrimination in
Article 2 of the CRPD is important. It establishes that human rights must be implemented through positive
measures in order to address ongoing systemic discrimination against persons with disabilities. Importantly,
the failure to provide or denial of reasonable accommodation is thus a separate and distinct basis upon which
to found a claim for disability discrimination under the CRPD.
The duty to provide reasonable accommodation in the CRPD extends to a broad array of social
actors and thus has substantial relevance for the rights-based application of disability supports. The State,
employers, education providers, health care providers, testing and qualification bodies, providers of goods
and services and private clubs, among others, are required to reasonably modify policies, practices and

273
Law reform is currently underway in, for example, Mexico, Vietnam, Zambia, and Jordan, to name a few.
274
CRPD, supra note 1, at art 5. Note that the premabular paragraphs of the CRPD reference equality and
non‐discrimination and Article 1 declares the purpose of the CRPD, and Article 3 articulates non‐discrimination as a
general principle.
275
Id. at art. 5(2).
276
Id. at art. 2.
277
Id. at art. 5(3).
278
Rehabilitation Act 1973 § 29 USC § 701 (year); 28 CFR § 41; 29 CFR § 32; 45 CFR § 84.
279

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premises that impede the inclusion and participation of persons with disabilities. The provision of reasonable
accommodation requires an individual analysis of the appropriate accommodations for persons with
disabilities in various settings, and therefore appropriate accommodations must be tailored to the
individual.280
The individual analysis is important as persons with the same disability are often assumed to
need the same reasonable accommodation, but in many instances that is not the case, and it is essential that
appropriate accommodations and supports must be determined for the specific person and not by their
disability. As it is not possible to foresee all reasonable accommodation interventions that may be required,
it is important for domestic legislation to incorporate reasonable accommodation provisions in a flexible,
open-ended format in disability support provision.
Legal capacity and enabling personalized decision-making
Advancing principles of dignity, autonomy and independence, Article 12 of the CRPD recognizes
that persons with disabilities must be equal before the law. Article 12 confirms that persons with
disabilities “enjoy legal capacity on an equal basis with others in all aspects of life.”281
This fundamentally
important provision reflects and responds to the reality persons with disabilities have all too often been
subjected to laws and practices that deprived them of their legal capacity.282
As such, their autonomy and
freedom to choose how and where to live their lives is effectively removed in such circumstances. This
clearly extends to the provision of disability supports.
Article 12(1) reaffirms that all persons, including all persons with disabilities, have the right to
recognition before the law, and thus should be recognised as rights holders (as opposed to objects to be
acted upon).283
The right to equal recognition before the law encompasses two important elements: (1)
recognition of legal personality, in the sense that rights and duties may be imposed; and (2) recognition of
the capacity to act, in the sense that one can actually exercise legal rights and duties under the law. Article
12(2) recognizes the right to the equal enjoyment of legal capacity.284
Article 12(3) requires the adoption of

280
See Lisa Waddington, When it is Reasonable for Europeans to be Confused: Understanding when a Disability
Accommodation is ‘Reasonable’ from a Comparative Perspective, 29 COMPARATIVE LABOR LAW & POLICY JOURNAL 3,
April 2008, pp. 101-124.
281
282 See, e.g., Mental Disability Advocacy Centre, Guardianship and Human Rights in Bulgaria: Analysis, Policy and
Practice, 2007, pp.19-20, available at
http://www.mdac.info/documents/Bulgaria%20report_comprehensive_English.pdf
283
CRPD, supra note 1, at art. 12(1).
284
Id. at art. 12(2).; According to the Office of the High Commissioner for Human Rights, the two terms ‘recognition
as a person before the law’ and ‘legal capacity’ are distinct. The concept of legal personality (derived from art 12(1)
CRPD) recognizes the individual as a person before the law and is therefore a prerequisite for the enjoyment of any
other right, while “legal capacity” is a broader term that includes the capacity of the individual to be subject of rights

343

supported decision making mechanisms (assisting the person to make a decision personally), as opposed to
substituted-decision making (someone else making a decision for the person).285
Supported decision-making models must allow and facilitate a person to exercise legal capacity
independently in a manner that preserves agency.286
Such models may not shift decisional power onto a
third party (i.e., mentor, guardian, curator). Supported decision-making models will undoubtedly require
legal reform at the domestic level, for example the amendment or repeal of guardianship or curatorship
regimes and the introduction of an appropriate supported decision-making mechanism that is adequately
resourced, individualized and properly implemented. Moreover, supported decision-making must meet
the diverse needs of persons with disabilities in across the wide array of legal transactions that persons
encounter and social activities. Support provision in this context can take various forms depending on
the need in question, for example by means of a personal assistant, peer support, ombudsman or public
defendant, or in certain situations through the use of informal networks.
Minimum safeguards against abuse are required in any supported decision framework used to
implement Article 12 of the CRPD. As provided in Article 12(4), these safeguards should include the
requirement that the support provider to assist the person with a disability in making decisions, and not
substitute their own will and preferences.287
Support providers must therefore respect the rights, will and
preferences of the person being supported. The type of support to be provided should be proportionate to
the person’s needs, individualised, and free from conflict of interest and undue influence. Further, support
arrangements should also be subject to regular review by an independent and impartial authority.
Finally, Article 12(5) addresses the specific issue of the right of persons with disabilities to own and
inherit property, and control their own financial affairs. The provision makes clear that persons with
disabilities cannot be deprived of their property absent lawful reason. It is thus incumbent upon States
Parties to provide the support needed to enable persons with disabilities to manage their financial affairs.
Article 12(5) further guards against arbitrary deprivations of property.288

and obligations as well as the capacity to act. The ‘capacity to act’ is intended as the capacity and power to engage in a
particular undertaking or transaction, to maintain a particular status or relationship with another individual, and more in
general to create, modify or extinguish legal relationships. OFFICE OF THE UNITED NATIONS HIGH COMMISSIONER FOR
HUMAN RIGHTS, HUMAN RIGHTS COUNCIL DISCUSSED THE HUMAN RIGHTS OF PERSONS WITH DISABILITIES ON 6 MARCH
2009 (2009), http://www2.ohchr.org/english/issues/disability/hrcresolution79.htm.
285
CRPD, supra note 1, at art. 12 (3).
286
This cornerstone idea is also linked to the necessary safeguards set forth in paragraph 4 of art 12, which “shall
ensure that measures relating to the exercise of legal capacity respect the rights, will and preferences of the person”.
287
CRPD, supra note 1, at art. 12 (4).
288
Id., at art. 12 (5).

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In sum, Article 12 explicitly recognizes the legal capacity of persons with disabilities and provides
measures to support their right to exercise their legal capacity. It essentially requires a continuum of support,
thereby acknowledging that some persons with disabilities require no support in making decisions, while
others may need intensive support. Article 12 thus affirms the position that, irrespective of the level of
support needed, States Parties should ensure that this support is not abusive and does not infringe upon the
human rights of the support recipient.
2.2.2 Choice in Living Arrangements
Article 19 of the CRPD, on living independently and in the community, reflects an extension of the right
to liberty, namely, the freedom to choose one’s own living arrangements.289
As some scholars have
emphasized, the CRPD embraces, and articulates for the first time in an international human rights treaty, the
right to community integration.290
Article 19 is thus specifically directed at the elimination of segregated,
congregate and socially isolated environments in which persons with disabilities have historically been
forced, or obliged, to live.291
Of particular concern to the CRPD drafters during treaty negotiation was the
elimination of living arrangements that segregated and isolated persons with disabilities (e.g., institutions,
social care homes, group homes, orphanages), and that all too often represented the choices of others.
Trenchantly, Article 19 requires States Parties to ensure that persons with disabilities are able to live in the
community with living arrangements equal to others, and that these options support the inclusion and
participation of persons with disability in community life.292
It requires that services for disabled people
should “support living and inclusion in the community’ and aim to ‘prevent isolation or segregation from the
community.”293
The provision also provides that persons with disabilities must be able to choose with whom they
live on an equal basis with others. To this end, States Parties are obliged to ensure that persons with
disabilities have access to the support services they require in order to live freely in the community. These
support services include in-home support, residential and community support services, and personal care.
Article 19 also seeks to ensure that mainstream community services and facilities are available and
responsive to the needs of persons with disability so as to facilitate their freedom to live in and be a part of
the community.

289
290
Id.; Eric Rosenthal and Arlene Kanter, The Right to Community Integration for people with Disabilities Under United
States and International Law, in DISABILITY RIGHTS LAW AND POLICY: INTERNATIONAL AND NATIONAL PERSPECTIVES 309‐368 (S.
Yee & M. Breslin ed., 2002).
291
Michael Stein and Gerard Quinn, Challenges in Realising the Right to Live in the Community, in Focus on Article 19
of The UN Convention On The Rights Of Persons With Disabilities 37 (European Coalition for Community Living 2009).
292
293
Id.

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It is still the case that national policies are oriented towards improving – and thus reinforcing –
institutional care as opposed to promoting community-based living.294
Disability Rights International
highlights the problem in regard to children in institutions and reports “governments and international donors
spend millions worldwide building and rebuilding these torture chambers for children with disabilities
instead of supporting families, substitute families when necessary and community services and education.”295
These policies are premised on paternalistic assumptions that do not reflect principles of participation,
inclusion and other disability rights concepts. As the European Coalition for Community Living has
emphasized:
People with disabilities are able to live in their local communities as equal citizens, with the support
that they need to participate in every-day life. This includes living in their own homes or with their
families, going to work, going to school and taking part in community activities.296
The implications of the CRPD are quite clear - instead of allocating resources towards rebuilding
segregated institutions, such resources should be used to provide proper support for persons with
disabilities to live in the community. Further, in cases where national policies promote community-based
and independent living, the failure of states to provide direct payments or individualized funding schemes
to persons with disabilities stands as a major barrier to managing one’s own affairs. Clearly, providing a
mechanism for direct payments helps to facilitate independent and autonomous decision-making. Very
often where direct payment options are provided by the State, persons with physical disabilities are more
likely to benefit than persons with mental disabilities because of stigma towards certain disabilities as well
as the failure to foster supported decision-making. The lack of community-based services, due to

294
This is the case for Bulgaria, for example, where, as ANED comments, national debate is focused on improving the
quality of institutional care, rather than creating conditions for children and adults to live in their own communities. It
should be noted though that some small steps towards independent living are currently taken. See KAPKA PANAYOTOVA,
ACADEMIC NETWORK OF EUROPEAN DISABILITY EXPERTS (ANED), ANED COUNTRY REPORT ON THE IMPLEMENTATION
OF POLICIES SUPPORTING INDEPENDENT LIVING FOR DISABLED PEOPLE: BULGARIA (2009),
http://www.disability-europe.net/content/pdf/BG-6-Request-07%20ANED_2009_Task_5_template_Bulgaria_to%20pu
blish_to%20EC.pdf.
295
DISABILITY RIGHTS INTERNATIONAL, THE WORLDWIDE CAMPAIGN TO END THE INSTITUTIONALIZATION OF CHILDREN,
http://www.disabilityrightsintl.org/learn‐about‐the‐worldwide‐campaign‐to‐end‐the‐institutionalization‐of‐children/.
“One of the main drivers of institutionalization – particularly in developing countries – is the use of misdirected
foreign assistance funding to build new institutions or rebuild old crumbling facilities, instead of providing assistance
and access to services for families who want to keep their children at home.” Id.
296
EUROPEAN COALITION FOR COMMUNITY LIVING, CREATING SUCCESSFUL CAMPAIGNS FOR COMMUNITY LIVING, AN
ADVOCACY MANUAL FOR DISABILITY ORGANISATIONS AND SERVICE PROVIDERS (November 2008) at 71.

346

insufficient funding, is yet another issue. The inadequate allocation of resources for the provision of
required hours of personal assistance to support living and inclusion in the community, as envisaged by
Article 19, is a common problem.
Review of European Policy on Choice in Living Arrangements
The EU and many Member States have ratified the CRPD, while other European countries have
signed it, thus affirming their commitment to uphold the rights of persons with disabilities. The European
Commission’s office for Employment, Social Affairs and Equal Opportunities published a report that
reviewed existing European policy and made recommendations to the EC on how best to transition from
institutionalized care to community based living arrangements in line with the CRPD.297
The report
identified four major problems with institutionalisation: (1) depersonalised treatments and interactions,
including the removal of personal possessions, important symbols of one’s individuality; (2) rigidity of
routine, such as fixed schedules for eating, activities and sleeping without flexibility for personal preference;
(3) block treatment, characterized by “processing” people in groups without privacy; and (4) social distance
and exclusion.298
Indeed, in many EU countries, institutional care still accounts for more than one-half of public care
expenditures.299
According to the report, rigid legislative and administrative rules in some EU countries
make it difficult to provide services to persons with disabilities outside of large institutions,300
and
therefore persons with disabilities still do not have a choice in their living arrangements, and are forced to
live in institutional settings for their entire lives. A recent European Coalition for Community Living
report on Slovenia provides further evidence of the how funding is being channeled to institutions in a way
that does not allow for any choice in living arrangements, as the report indicates:
If a disabled person lives in a long stay residential institution, living expenses are covered by the State,
with funds given directly to the institution. Disabled people who choose to live alone or by
themselves lose this financial support. This means that disabled people who want to live
independently need to have a source of income, or be financially supported by their families.301

297
http://ec.europa.eu/social/BlobServlet?docId=4017&langId=en [hereinafter, EC AD HOC EXPERT GROUP TRANSITION FROM
INSTITUTIONAL TO COMMUNITY BASED CARE].
298
Id, at 7.
299
Id., at 9.
300
Id.
301
EUROPEAN COALITION FOR COMMUNITY LIVING (ECCL), FOCUS ON ARTICLE 19 OF THE UN CONVENTION ON THE
RIGHTS OF PERSONS WITH DISABILITIES, “WE WANT EQUAL, NOT SPECIAL TREATMENT!”, at 34,
http://www.community-living.info/index.php?page=308&news=423 (last visited August 24, 2010).

347

The current disability supports in Slovenia are for persons with disabilities to live in institutions, but do
not provide options for persons with disabilities to make their own living arrangements in the community
with proper supports. Other EU countries have similar policies, for instance, in Ireland there are 72
institutions for persons with disabilities that cost the State €500 million per year to operate.302
At
present, 4,000 persons with disabilities live in institutions that are predominantly operated by voluntary
organizations or religious groups.
A recent study carried out in EU Member States and Turkey, De-institutionalisation and
Community Living: Outcomes and Costs (DECLOC), found that nearly 1.2 million children and adults
with disabilities live in long-stay residential institutions.303
DECLOC reported that in 16 out of 25
countries for which information was available, state funds (local or regional) are used at least in part to
support institutions with 100 or more places for persons with disabilities.304
Further, the report noted
that in 21 of the countries surveyed state funds are used to support institutions with more than 30
places.305
The report stressed the importance of transitioning from institutionalized care to community
based supports in line with existing relevant international human rights standards.306
It also emphasized
the importance of member states to: involve family members and children in decision making processes,
use structural funds for the transition from institutional to community based care, establish proper
monitoring systems to ensure quality of life, create support systems and proper working conditions for
professional and informal support providers, and increase coordination between government departments
and agencies involved in the transition process.307
The issue of State funding for institutional care
and lack of efficient individualised funding schemes discourages independent living and social inclusion
for persons with disabilities.
The Council of Europe Committee of Ministers Recommendation on Deinstitutionalization and
Community Living of Children with Disabilities reflects the strong move in favor of community based living
arrangements within a framework of responsible transition away from institutionalization. 308
The

302
Carl O’Brien, Institutions for disabled should be closed down, says report, THE IRISH TIMES, July 12, 2010, available at
http://www.irishtimes.com/newspaper/frontpage/2010/0712/1224274518367.html?via=mr.;
303
Mansell J., Knapp M., Beadle-Brown J., and Beecham J. (2007) Deinstitutionalisation and community
living – outcomes and costs: report of a European Study. Volume 2: Main Report. Canterbury: Tizard Centre, University
of Kent.
304
Id.
305
Id.
306
EC AD HOC EXPERT GROUP TRANSITION FROM INSTITUTIONAL TO COMMUNITY BASED CARE, supra note (), at 20.
307
Id., at 20‐21.
308
Recommendation CM/Rec (2010)2 of the Committee of Ministers to Member States on Deinstitutionalization and
Community Living of Children with Disabilities, 3 Feb. 2010, reprinted in European Yearbook of Disability Law, vol. 2
(Lisa Waddgington & Gerard Quinn, eds., 2010) at pp. 385‐394.

348

Recommendation stresses “the fact that placing children in institutionalized forms of care raises serious
concerns as to its compatibility with the exercise of children’s rights”309
and recommends that governments
take measures “in order to replace institutional provision with community-based services without a
reasonable timeframe and through a comprehensive approach.”310
The Recommendation further sets forth
principles and actions to be undertaken in order to facilitate the transition from institutionalization to
community-based services with supports. This is keeping with Mansell’s work on the issue which
emphasizes that it is important for alternatives to institutionalization to be sensitive to the need shift
institutional culture so that service provision in the community is directed towards full participation in
society.”311
This approach acknowledges that substituting the same institutional culture in service provision
at the community level is unacceptable.
2.2.3 Life in the Community
The foregoing sections have outlined the general principles that amplify current approaches to
facilitating full inclusion and participation of persons with disabilities in society, drawn from the
international as well as regional disability rights standards, and the concept of personalization which
emphasizes independence and respect for individual decision-making. The overall thrust of these concepts
is to promote full inclusion in a meaningful way and to advance reforms in support systems in a manner that
fosters and reinforces participation in the community. The section that follows identifies some of the
specific substantive rights, under international law and reflected in European law and policy. In
combination, these rights and supporting principles can help foster engagement in community and tackle
exclusionary barriers and isolation for persons with disabilities.
Fostering Accessibility
The CRPD’s preamble reminds us that the treaty was motivated in large measure by the continuing
exclusion of persons with disabilities persons,312
and recognition of the many benefits that participation in
community contributes to society and personhood.313
Article 9 (Accessibility) aims to dismantle barriers

309
Id. at para. 14.
310
Id. at para. 17.
311
Jim Mansell et al, Deinstitutionalisation and Community Living: Position Statement of the Comparative Policy and
Practice Special Interest Research Group of International Association for the Scientific Study of Intellectual Disabilities,
54 Journal of Intellectual Disability Research, 104–112 (February 2010) at 105.
312
See CRPD, at preamble (k) (expressing concern that in spite of soft laws “persons with disabilities continue to face
barriers in their participation as equal members of society”).
313
See id. at preamble (m) (acknowledging that “full participation by persons with disabilities will result in their
enhanced sense of belonging and in significant advances in the human, social and economic development of society and
the eradication of poverty”).

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established on the basis of discriminatory attitudes by promoting different forms of accessibility in the public
and private spheres, including physical, technological, economic and social accessibility, as well as
information and communication accessibility. It imposes a general obligation on States Parties to enable
persons with disabilities to live independently and participate fully in all aspects of life by ensuring equal
access to the environment. Requiring States Parties to identify and eliminate obstacles and barriers to
accessibility and specifically highlighting access to public and domestic buildings; transport and transport
infrastructure; information and communication technologies and systems; and public services and facilities,
the CRPD provides a broad framework within which to achieve accessibility and in respect of different
aspects of inclusion.
In addition, Article 9 requires that medical facilities, electronic services and emergency services be
accessible to persons with disabilities, that measures such as signage in public buildings should be made
available in Braille and in easy-to-read formats and that live assistance and intermediaries should be
available, where required, to facilitate access by persons with disabilities to buildings and other facilities
open to the public.314
Article 9, in underscoring the need for States Parties to promote access for persons
with disabilities to new information as well as communications technologies and systems, including the
Internet, requires States Parties to promote the incorporation of accessibility measures into the design,
development, production and distribution of accessible information and communication technologies and
systems.315
Article 9 also requires equivalent levels of accessibility to be available in both urban and rural
areas. Crucially, the obligations imposed apply to public services and facilities provided by government, and
the private sector. 316
Article 9 clarifies that accessibility is to be achieved through a variety of
implementation measures, including the development and monitoring of minimum standards and guidelines
for accessibility317
and the provision of training for stakeholders in accessibility issues.318
The European Community in Council Decision 2010/48/EC 319
on the CRPD declared its
competence to address accessibility in the fields of goods, services, personal mobility (e.g. transport), and
information and communication technologies. In the area of goods and services, Council Directive
2001/85/EC320
aims to guarantee the safety of passengers, and has established special provisions for vehicles

314
See CRPD, supra note 1, at art. 9.
315
Id.
316
Id. at art. 9(2)(b).
317
Id. at art. 9(2)(a).
318
Id. at art. 9(2)(c).
319
Council Directive (EC) 2010/48.
320
Council Directive (EC) 2001/85 relating to special provisions for vehicles used for the carriage of passengers
comprising more than eight seats in addition to the driver’s seat, and amending Directives 1970/156/EEC and
1997/27/EC [2002] OJ L43/1.

350

used for the carriage of passengers comprising more than eight seats. The Directive also addresses the needs
of persons with reduced mobility,321
through the provision of technical prescriptions to foster accessibility in
accordance with EC transport and social policies. The Directive sets out harmonising technical
requirements322
for the design of vehicles comprising more than eight seats in addition to the driver’s seat.
In the area of product safety and consumer protection, Directive 2001/83/EC323
on medical products for
human use, requires that information in Braille is provided on the package and requires that the marketing
authorisation holder should ensure that the package information leaflet is also available in formats
appropriate for blind and partially sighted persons.324
More could be done, however, to ensure accessibility
beyond the standards for persons with visual impairments, as the Directive does not address accessibility for
persons with other types of disabilities and in particular persons with intellectual disabilities, who may
require different accommodations, such as, for example, a symbol or pictogram that will demonstrate the
purpose of the product.325
The CRPD supports accessibility in other ways, for example through Article 20 (Personal mobility)
requiring States Parties shall take effective measures to ensure personal mobility with the greatest possible
independence for persons with disabilities.326
An illustrative, but non-exhaustive list, provides an indication
of the type of measures to be taken, including:
Facilitating the personal mobility of persons with disabilities in the manner and at the time of their
choice, and at affordable cost;
Facilitating access by persons with disabilities to quality mobility aids, devices, assistive technologies
and forms of live assistance and intermediaries, including by making them available at affordable
cost;

321
It should be noted that the definition of ‘persons with reduced mobility’, included in the Directive 2001/85/EC, is
broad and includes all people who have difficulty when using public transport, such as disabled people (including
people with sensory and intellectual impairments, and wheelchair users); people with limb impairments; people of small
stature; people with heavy luggage; elderly people; pregnant women; people with shopping trolleys; and people with
children (including children seated in pushchairs).
322
See Annex VII of Directive 2001/85/EC.
323
Directive 2001/83/EC of the European Parliament and of the Council of 6 November 2001 on the Community code
relating to medicinal products for human use, [2001] O.J. L.311/67.
324
See Article 56(a) of Directive 2001/83/EC.
325
See Inclusion Europe Report, “Inclusion of people with severe and profound intellectual disabilities”, p. 6, available
at http://www.inclusionireland.ie/downloads/Inclusionofpeople.pdf.
326

351

Providing training in mobility skills to persons with disabilities and to specialist staff; and
Encouraging entities that produce mobility aids, devices and assistive technologies to take into account
all aspects of mobility for persons with disabilities.327
European policy is trending in the direction of facilitating personal mobility. For example, in the
context of transport, Regulation 1107/2006,328
is a disability-specific Community measure designed to
protect the rights of disabled persons, and persons with reduced mobility, when travelling by air. Specifically,
the basic principles of the Regulation track closely with the requirements of Article 9, for example, the
standard that persons with disabilities may not be denied boarding or booking and that staff dealing directly
with the travelling public should receive disability-awareness and disability rights training.
Giving Full Effect to Social Rights
As noted previously, participation as a value and general principle is firmly embedded in the CRPD
text and gives rise to more particular applications across the full range of civil, political, economic, social
and cultural realms.329
The CRPD recognizes a number of specific measures designed to enhance
participation in various realms of social - as well as cultural - life. The socializing effects of community
inclusion are reinforced through the specification of social rights in the CRPD. Thus, the CRPD signifies a
major break from perspectives that saw social programs as a way of managing or merely maintaining persons
with disabilities. Economic, social and cultural rights in the CRPD and now in European disability policy
are a means of enhancing freedom and enabling persons with disabilities to attain independence and manage
their own lives.
Article 30 of the CPRD , for example on participation in cultural life, recreation leisure and sport
recognizes the power of participation as a vehicle for inclusion and as social change conveyor.330
The
recognized right in the CRPD of persons with disabilities to participate in a wide array of cultural,
recreational, sporting, and leisure activities as central to their full social inclusion, is the most detailed
expression of this general right in international human rights law generally, and points to its importance for
persons with disabilities in particular.331
Article 30 includes the duty of States to take measures to support
access to places where cultural performances or services are held, such as theatres, museums, cinemas,

327
Id.
328
Regulation (EC) No 1107/2006 of the Parliament and of the Council of 5 July 2006 concerning the rights of
disabled persons and persons with reduced mobility when travelling by air OJ L 204 of 26.7.2006.
329
See CRPD, supra note 1, at art. 3 (c).
330
For more on Article 30, see generally Michael A. Stein & Janet E. Lord, Jacobus tenBroek: Participatory Justice, and
the UN Convention on the Rights of Persons with Disabilities, 13 TEX. J. C.L. & C.R. 167 (2008); Janet E. Lord & Michael A. Stein,
Social Rights and The Relational Value of the Rights to Participate in Sport, Recreation and Play, 27 BU INT’L L. J. 249
(2009). See also SPORT IN THE UNITED NATIONS CONVENTION ON THE RIGHTS OF PERSONS WITH DISABILITIES (Eli Wolff et al. eds.
2007) [hereinafter UN SPORT], available at http://www.sportanddev.org/data/document/document/336.pdf.
331
See generally UN SPORT, supra note 139.

352

libraries and tourism services.332
It also includes, as far as possible, access to monuments and sites of
national cultural importance.333
Significantly, the CRPD also affirms the right of people with disabilities to
develop their creative, artistic, and intellectual potential for both individual and societal benefit.334
Other CRPD provisions similarly emphasize social rights as a vehicle for community participation
and the advancement of full citizenship. Thus, Article 19 of the CRPD, in addition to creating a right of
choice in living arrangements for persons with disabilities, articulates the right to community inclusion and
participation for persons with disabilities.335
In order for persons with disabilities to be included in their
community it is essential to ensure that adequate supports are provided in various community settings. Thus,
to realize rights of citizenship and thereby achieve the goal of community inclusion and participation, Article
19 must be read in alongside other general provisions of the CRPD dealing with: employment,336
accessibility, 337
education, 338
cultural and recreational activities, 339
decision making processes, 340
elections,341
among others, to ensure persons with disabilities are integrated members in their community.
The European Committee on Social Rights has recognized the strong link between social rights and
citizenship. In an education complaint, for instance, the applicant, Autism Europe, asserted that France was
failing to meet its obligation under, inter alia, Article 15(1) of the revised European Social Charter. The
Autism Europe v. France342
claim essentially alleged that children and adults with autism were not able to
exercise the effective enjoyment of the right to education in mainstream school settings or in specialized
educational institutions due to inadequate support. In other words, the school, system was failing to
accommodate their individual needs. The Committee found that France had failed to meet its obligations
under the Charter insofar as it had failed to demonstrate that it was taking reasonable steps towards the
fulfillment of Article 15 and other associated rights, including Article 17 (the right of children to social
support) and Article E (equality). Crucially, the Committee stated:
The underlying vision of Article 15 is one of equal citizenship for persons with disabilities
and, fittingly, the primary rights are those of ‘independence, social integration and participation in
the life of the community.’343

332
CRPD, art. 30(1)(c).
333
See id.
334
See id. at art. 30(2).
335
336
Id. at art. 27.
337
Id. at art. 9.
338
Id. at art. 24.
339
340
Id. at art. 4(3).
341
Id. at art. 29.
342
Autism Europe v. France, Complaint No. 13/2002, decision on the merits of 4 November 2003.
343
Id. at para. 48.

353

The Committee acknowledged that education plays an important role in advancing citizenship
rights.344
Fostering Community Participation through Meaningful Employment
Article 27 of the CRPD confirms the right of persons with disabilities to employment on an equal
basis with others and requires States Parties to recognise the equal right of persons with disabilities to freely
chosen or accepted work in an open and inclusive labour market under just and fair conditions.345
It
enumerates a range of measures to be taken by States Parties in order to give effect to the right to work,
including the general prohibition of discrimination on the ground of disability in all forms, sectors and
levels of employment which covers, inter alia, conditions of recruitment, hiring, continuity of employment,
career advancement and occupational health and safety. Article 27 mandates that States Parties to establish,
by means of legislation, the duty to provide reasonable accommodation in the workplace for persons with
disabilities.346
States Parties are also required to ensure that persons with disabilities are protected from
harassment in the workplace, and have effective avenues for the redress of work-related grievances.347
It
reaffirms the right of persons with disabilities to exercise their labour and trade union rights on an equal
basis with others, for example by ensuring that labour and trade unions, or associations, are accessible to,
and inclusive of, employees with disabilities. Moreover, States Parties should ensure that persons with
disabilities have access to comprehensive employment-related support services (e.g. jobseeker and
placement services, placement support and job retention services, professional rehabilitation, and others),
education and training (e.g. technical or vocational training, vocational guidance programmes, and
others). 348
Other measures set forth in Article 27 relate to the promotion of self-employment,
entrepreneurship, and personal business opportunities for persons with disabilities, and affirmative action
programmes, or incentives that will encourage the employment of persons with disabilities in the private
sector.349
Such affirmative measures may include, inter alia, tax reliefs, provision of financial subsidies to
employers, or the determination of employment quotas in the recruitment of persons with disabilities, or
others. Finally, Article 27(2) UN CRPD requires States Parties to ensure that persons with disabilities are
effectively protected from slavery servitude, and forced and compulsory labour.350

344
For another decision of the European Social Committee underscoring the importance of quality education for
children with disabilities as a means of harnessing social rights and full participation, see MDAC v Bulgaria, Complaint
No. 41/2007, European Committee of Social Rights, Decision of 3 June 2008.
345
Id. at. Art. 27.
346
See UN Doc A/HRC/10/48, pp 17-18.
347
See CRPD, supra note 1, at art. 27(1)(b).
348
Id. at art 27.
349
Id.
350
Id. at art. 27(2).

354

Developments in Europe serve to reinforce the concept of full inclusion through employment for
persons with disabilities. Notably, the 1997 Amsterdam Treaty351
accorded to the European Community
the authority to combat discrimination on the ground of disability (among other grounds). This
development provided the point of departure for developing a Directive in 2002 on discrimination, namely,
the Employment Equality Directive of 2000.352
Its aim is to prohibit and combat discrimination on the
grounds of disability as well as religion or belief, disability, age or sexual orientation as regards
employment, occupation and vocational training. Article 2 of the Directive defines discrimination, as any
“less favourable” treatment of a person due to, inter alia, his/her disability and includes both direct and
indirect discrimination, and harassment, however, it should be noted that it does not provide a clear
definition of disability.353
The Directive does require employers to provide reasonable accommodations
for persons with disabilities in Article 5 and requires Member States to ensure that employers take
appropriate measures to enable persons with disabilities to have access to, and participate in, or advance in
employment, thereby promoting qualified candidates with a disability to access the labour market.354
Unfortunately, and inconsistent with the CRPD, the Directive does not clearly establish that the failure to
provide reasonable accommodation constitutes discrimination, in contrast with the CRPD. It is hoped that
future developments will remedy this deficiency.
Innovative Resource Mechanisms
Resource mechanisms will undoubtedly play an essential role in helping to fulfill the far-reaching
aims of the CRPD and in advancing full participation in the life of the community for persons with
disabilities. While the global recession has put tremendous pressure on social funds throughout the world,
there are, nonetheless, some innovative funding mechanisms in place that can serve to advance community
participation for persons with disabilities. It should be mentioned, however, that the drafters of the CRPD
did not opt for inclusion of any of the resource mechanisms supported by developing countries nor did they
support those frequently included in other types of international treaties, such as environmental agreements.
Some developments in the European context, however, are worth citing.
Structural funds were established to promote implementation of the EU’s strategy to reduce
disparities between the regions of Europe, otherwise known as the Cohesion policy. Council Regulation (EC)

351
Treaty of Amsterdam amending the Treaty on European Union, the treaties establishing the European Communities
and certain related acts, as signed in Nice on 26 February 2001 and published in the Official Journal of the European
Communities No C 80 of 10 March 2001,at art. 5.
352
Council Directive (EC) 2000/78, establishing a general framework for Equal Treatment in Employment and
Occupation [2000] O.J. L303/16; available at
http://eur-lex.europa.eu/LexUriServ/LexUriServ.do?uri=OJ:L:2000:303:0016:0022:EN:PDF.
353
Id.
354
Id. at art. 5.

355

No 1083/2006355
sets forth general provisions for three such funds: European Regional Development Fund
(ERDF), the European Social Fund (ESF) and the Cohesion Fund. The two funding mechanisms of greatest
relevance to the development of community-based services for persons with disabilities are the ESF and the
ERDF.
The ESF was established to reduce differences in prosperity and living standards across the EU in
order to advance economic well-being and aims to support projects directed at promoting employment and to
help citizens advance their education and skills to improve their job prospects.356
It also assists EU Member
States to achieve goals established in the European employment strategy and disability action plan and can
thus be accessed to fund training for staff working with people with disabilities. The ERDF is directed at
financing “productive investment leading to the creation or maintenance of jobs, infrastructure and local
development initiatives and the business activities of small and medium sized businesses.”357
These
investments may include “investments in health and social infrastructure which contribute to regional and
local development and increasing the quality of life.”358
As the Ad Hoc Expert Group on the Transition from
Institutional to Community based Care indicated, in some countries it has been applied to finance the
construction of new residential institutions or renovate existing residential institutions.359
That report
recommends that guidelines should be developed on the use of funds and that such guidelines should be
directed at ensuring that “projects which aim to build, enlarge or perpetrate institutions are not in line with
the Convention on the Rights of Persons with Disabilities and EU’s own policies on equal opportunities,
social inclusion and discrimination, and are therefore not eligible for funding.”360
As a Report of the
Council of Europe Parliamentary Assembly emphasizes:
In order to enable active participation of persons with disabilities in society, it is necessary
that they are given the opportunity to interact with the community. The practice of placing

355
Council Regulation (EC) No 1083/2006.
356
Report of the Ad Hoc Expert Group on the Transition from Institutional to Community based Care,
(September 2009) at p. 22. See also European Coalition on Community Living, Wasted Time, Wasted Money,
Wasted Lives…A Wasted Opportunity? A Focus Report on how the current use of Structural Funds
perpetuates the social exclusion of disabled people in Central and Eastern Europe by failing to support the
transition from institutional care, 2010.
to community-based services
357
See European Communities, Ensuring accessibility and non-discrimination of people with disabilities: Toolkit for
using Structural and Cohesion Funds, European Commission, Directorate-General for Employment,
Social Affairs and Equal Opportunities, Unit G.3, 2009 at 13.
358
Id.
359
Report of the Ad Hoc Expert Group on the Transition from Institutional to Community based Care, (September
2009) at p. 22.
360
Id.

356

children and adults with disabilities into institutions undermines their inclusion as they are
kept segregated from the rest of society and suffer serious damage to their healthy
development and obstruction of the exercise of other rights. Deinstitutionalisation is a
prerequisite to enabling people with disabilities to become as independent as possible and
take their place as full citizens with the opportunity to access education and employment,
and a whole range of other services.361
Clearly, Structural Funds should not be used to perpetuate and reinforce systems of institutional care.
Rather, they should be used to raise awareness about the right of persons with disabilities to live in the
community, with choices equal to others. Engaging persons with disabilities and their representative
organisations in the planning and delivery of such training is essential.
Of particular relevance for disability rights and facilitating the implementation of the CRPD is the
requirement laid out in Regulation 1083/2006 that both the Member States and the Commission should take
all appropriate measures to prevent any discrimination on the basis of, inter alia, disability, during all phases
of implementation of the Funds.362
Article 16 of the Regulation provides that accessibility for persons with
disabilities should be “one of the criteria to be observed in defining operations co-financed by the Funds and
to be taken into account during the various stages of implementation.”363
The Regulation has relevance for
all fields covered by the CRPD and co-funding awarded by the Funds should respect and promote the
CRPD’s general principles. Finally, co-funding of national projects of programmes by the Funds should be
contingent on inclusion of, and accessibility to, persons with disabilities. In this regard, it can play a key
role in the effective implementation of the CRPD.
2.3 Provision of Public Supports and Services
In an effort to inform the progressive, rights-based reform of disability supports throughout Europe,
international and regional standards that guide government contracting and the issuance of public
procurements assume special significance. Government contracting has long been used to provide disability
supports throughout the world, but in many European countries governments provide public funding to
organizations and institutions that do not promote the human rights of persons with disabilities. Supports
must be provided within a framework directed towards full participation, inclusion and autonomy, as

361
Parliamentary Assembly of the Council of Europe 1 Council of Europe, Parliamentary Assembly, Access to rights
for people with disabilities and their full and active participation in society, Report, Social, Health and Family Affairs
Committee, Doc. 11649, 8 August 2008, paragraph 44.
362
Id.
363
Id.

357

opposed to dependence, segregation and paternalism. In other words, community-based supports should
foster the full citizenship of persons with disabilities, facilitating inclusion in all aspects of community life.
Thus, Ireland has primarily funded church based organizations that provide “services” for persons with
disabilities, often in institutional settings, as opposed to promoting proper “supports” to persons with
disabilities to live independently as members of their community.364
Such an approach is not in keeping with
a rights-oriented perspective that sees the utilization of social and economic supports as a way to “underpin
social inclusion and provide the material means by which individuals can make and effectuate their own
life.”365
The role of public procurement processes in promoting – or unfortunately in many instances
restraining – citizenship for persons with disabilities is essential. Government contracting is an important
vehicle for the promotion of environmental and corporate social responsibility, with public procurements
making up 15-20% of the Gross Domestic Product (GDP) in most EU member States.366
As EU members
continue to rely more heavily on government contracts generally, it is essential to consider how member
states ensure public contracts are properly addressing disability supports. The EU’s recent ratification of the
CRPD marks an important starting point for reviewing the issuance of public procurements and the resulting
contracts.
Article 32 of the CRPD addresses the role that international cooperation and disability inclusive
development can play in support of national CRPD implementation efforts.367
The provision is relevant to
the provision of disability supports and services insofar as it obligates States Parties to cooperate
internationally through partnerships with other States, with relevant international and regional organisations,
and civil society in support of national measures to give effect to the CRPD. Importantly, Article 32 of
the CRPD requires that all international cooperation efforts, including international development
programmes, should be fully accessible to, and inclusive of, persons with disabilities, with obvious
implications for the provision of disability supports and services not only across the EC but also between
Member States and international development partners.368

364
http://ec.europa.eu/social/BlobServlet?docId=4017&langId=en.
365
Gerard Quinn and Christian Courtis, Poverty, Invisibility and Disability in FREEDOM FROM POVERTY AS A HUMAN RIGHT
203, 206 (Geraldine Van Bueren, 2009),
366 CHRISTOPHER MCCRUDDEN, BUYING EQUALITY DRAFT CHAPTER,(2009), available at
http://www.michiganlawreview.org/articles/mccrudden-buying-social-justice-equality-government-procurement-and-le
gal-change.
367
368
Id.

358

Specifically, all States Parties are required to make every aspect of their aid programmes, from
design to implementation and evaluation, including procurement processes completely accessible for
persons with disabilities.369
This obligation can be satisfied through legislation, or through specific policy
pronouncements, or both. Article 32 should be read through the lens of Article 3 (General principles), and
thus in implementing the obligation to make development programmes inclusive of persons with disabilities,
States Parties must ensure that laws and policies applied to implement Article 32 are consistent with the
principles of non-discrimination, participation, accessibility, among others.
Further, Article 32 lays out the standard for States Parties to follow in regard to ensuring public
procurements are accessible to persons with disabilities and non-discriminatory. To this end, States
Parties must ensure that all public procurements meet the obligations laid out in the CRPD, including public
procurements for work within the State itself, and not just procurement mechanisms intended for
international cooperation efforts. This is particularly relevant in regard to disability supports as many
States do not ensure their procurement system is in line with the CRPD’s paradigm shift to the social model
of disability. These States often award public funding for disability supports to charity or medical groups,
but rarely award funding to groups who work to provide adequate supports for the individual needs of
persons with disabilities. As European countries work to advance the rights set forth in the CRPD,
governments must develop models of good practice in their use of public procurements. There is
tremendous value behind governments setting best practice models for private industry and others to follow.
Recent EU directives on public procurements were created to ensure “a European area for public
procurement in the context of the internal market. It is based on the fundamental principles enshrined in the
Treaty establishing the European Community: equal treatment, a transparent and non-discriminatory call
for competition, mutual recognition, the fight against fraud and corruption.”370
Additionally, the new
directives require public procurements to be accessible to persons with disabilities.371
Clearly the EU is
establishing directives for member states to follow in issuing public procurements that promote equality and
non-discrimination. As EU member states issue public procurements they should ensure that they are
accessible and inclusive of persons with disabilities and advance appropriate disability supports for full
inclusion in society.
European governments should clearly champion the rights-based implementation of disability
supports through issuing public procurements that are accessible to organizations of persons with

369
Id.
370
EUROPA, SUMMARIES OF EU LEGISLATION, PUBLIC PROCUREMENT IN THE WATER, ENERGY, TRANSPORT AND POSTAL
SERVICES SECTORS (2004), http://europa.eu/legislation_summaries/energy/internal_energy_market/l22010_en.htm#key
(last visited August 25, 2010); Council Directive 2004/17, 2004 OJ (L134)1,14 (EC) [hereinafter Council Directive
2004/17).
371
Council Directive 2004/17, supra note 179.

359

disabilities and support providers who implement appropriate supports for persons with disabilities to live
independently in the community. National level policies concerning the institutionalization of persons with
disabilities (discussed in section 2.2.2) point to the need for important reforms to disability support systems.
As discussed, Ireland spends €500 million per year to institutionalize 4,000 persons with disabilities.372
In
accordance with international and regional human rights standards, the Irish government should reform
their public procurement system to reallocate the €500 million to organizations who provide disability
supports to the 4,000 persons with disabilities, as well as other persons with disabilities in Ireland, to live in
the community. Similarly, other governments that are actively funding institutional living arrangements
should, in keeping with the Recommendation of the Committee of Ministers, work to transition to
community living with appropriate supports, with benchmarks. Moreover, the development policies of
bilateral donors should adhere to the Recommendation and track expenditures to ensure they are directed
toward community living arrangements as opposed to reinforcing segregated institutional living.
2.4 Conclusion – Opportunities and New Directions in Enabling Citizenship and Independence
The twenty-first century has ushered in the disability rights project, both internationally, regionally
within Europe and domestically. The CRPD reflects a sharp turn away from charity-driven, passive
approaches to disability supports and a clear embrace of disability equality, informed by personalisation,
choice in living arrangements and life in the community. The CRPD, along with law and policy in Europe,
evoke an appreciation that social programs aimed at management and maintenance of persons with
disabilities, as opposed to full participation, autonomy and inclusion, are no longer an acceptable framework.
The challenge, then, is to continue the project of reconfiguring disability supports towards the realization of
disability equality and human rights for all persons with disabilities. This effort requires substantive and
processual change, for clearly the realization of disability equality cannot happen absent the full participation
of persons with disabilities themselves and their representative organizations.
These developments in disability law and policy at the international and European level do not exist
in a vacuum. They are part of a broader human rights evolution that seeks to apply human rights principles
to all persons, in particular groups with a long history of social and economic exclusion. In this sense,
disability law informs and is informed by empowerment models in relation to other socially excluded groups,
including racial and ethnic minorities, women, children and persons living in poverty. The equality and
non-discrimination framework laid out in the CRPD and reflected in European law and policy focuses on
individual needs in the manner required by persons with disabilities, States as well as human rights advocates
may thus apply this model and the principles it expresses to develop the individual talents of other excluded

372
See O’Brien, supra note 111.

360

groups.
In providing specific coverage of a full range of civil, political, economic, social and cultural rights,
the CRPD is directed towards enabling independence and full participation within the community for persons
with disabilities. In this regard it signals a decisive break from historical practices, and indeed many earlier
international documents on disability. The thrust turns away from passive, paternalistic approaches that
tended to privilege medical care and rehabilitation and embraces fully the rights-oriented provision of
essential supports that are crucial in promoting full citizenship, autonomy and living a full life with dignity.
The principles and standards reflected in the CRPD that relate to the focus of this project, namely,
personalization, choice in living arrangements and life in the community, are also emerging as regional, as
well as national, standards in Europe. The ratification by the CRPD by many States in Europe as well as by
the European Union will provide further impetus for change, prompting greater alignment with the CRPD in
the modernisation of disability supports. Law and policy reform in this context should be further
invigorated by the robust monitoing of compliance with the CRPD not only through the CRPD Committee,
but likewise through national human rights institutions, the EU in its areas of CRPD comptence and the
Council of Europe. Effective monitoring hinges on the acknowledgement that social rights and supports are
in the service of personalisation, choice in living arranegements and life in the community, along with the
animating principles of dignity, autonomy, non-discrimination and participation.

361

附錄
Appendix
1. 障礙者社區居住權公聽會訴求
The Right to Community Living for People with Disabilities Public Hearing
2. 台灣成年智能障礙者使用三種居住服務的成果與成本之比較評估
Outcomes and Costs of Residential Services for Adults with Intellectual Disabilities in
Taiwan: A Comparative Evaluation
3. 台灣成年障礙者住宿服務樣態與服務費分析
Analysis of Types and Costs of Housing and Support Services for Adults with Disabilities
in Taiwan
4. 台灣社區居住方案的發展與挑戰
Community Living in Taiwan: Development and Challenges
5. 各縣市辦理成年心智障礙者社區居住與生活服務方案概況
Summary of Community Based Living and Support Services for Adults with Intellectual
Disabilities in Taiwan’s Major Cities and Counties
6. 衛福部及各縣市政府社區居住方案補助比較
Comparison of Community Based Living Program Subsidies Offered by Taiwan’s
Department of Health and Social Welfare and Various Local City and Country
Governments
7. 身心障礙者權利公約
The Convention on the Rights of Persons with Disabilities，CRPD
8. 台灣社區居住與獨立生活聯盟團體會員名冊

362

Appendix 1 The Right to Community Living for People with Disabilities Public Hearing
附錄一、障礙者社區居住權公聽會訴求
障礙者社區居住權公聽會
台灣社區居住與獨立生活聯盟
2015.10.2
壹、居住權是基本人權
聯合國於 1985 年起，將每年十月第一個星期一訂為「世界人居日」（World Habitat Day），宣示
居住是重要權益。於 2006 年 12 月 13 日通過身心障礙者權利公約(The Convention on the Rights of
Persons with Disabilities，CRPD) ，第十九條獨立生活和融合社區亦明示：身心障礙者有機會在
與其他人平等的基礎上選擇居所，選擇於何處、與何人一起生活，不被強迫於特定之居住安排
中生活。
台灣於 2011 年 11 月 3 日通過之住宅法亦宣示居住是基本人權，國民應有適宜之住宅。並於 2014
年 8 月 1 日通過 CRPD 施行法，揭示該公約具國內法律之效力，並要求各級政府負責籌畫、推
動及執行各項規定。另於 2007 年 6 月 5 日修法通過身心障礙者權益保障法，第五十條亦要求各
級政府辦理社區居住服務。
貳、獨立，是人權核心
獨立，代表意志自由自主，是人權核心。
1950 年代以前歐美身心障礙服務以提供大型集中式教養機構服務(institution care)為主，1960 年
代逐漸走向以社區為基礎的社區照顧(community care)模式。1970 年代進一步發展獨立生活運
動，美國於 1982 年組成「獨立生活全國會議」(National Council on Independent Living ) ；歐洲
14 個國家於 1989 年組成「獨立生活歐洲會議」（European Parliament Independent Living
Resolution )，更積極倡議透過福利服務支持系統(support service)協助，身心障礙者有權選擇與
決定留在社區居住(community living)，並與社會融合(social inclusion) 之獨立生活方式。
參、社區居住是國際潮流
聯合國自 1960 年代開始大力推動世界各國發展「去機構教養化」(de-institutionalization)的福利
措施，瑞典於 1993 年、挪威於 1995 年完全關閉教養院，英國白皮書亦要求 2004 年必須關掉所
有的教養院。美國關閉 16 床以上的教養院，居住服務型態以 4 人以下為主。而日本亦禁止全日
型住宿機構的興建，並獎勵機構轉型提供社區居住服務。由此可見，社區居住是國際潮流。

363

肆、台灣拒絕融入世界潮流
2007 年比較台灣三種居住模式（100 床以上教養院、50 床以下的團體家庭、六人以下社區居
住）研究報告(周月清等)指出，社區居住方案之住民生活品質較高（住民有較多個人活動安排
的選擇，以及較少的制式化安排活動），工作人員工作滿意度亦較高（比較有自主性）。
該研究亦指出，社區居住方案營運總成本亦低於教養院。比較三種模式服務成本（土地及建物
折舊不算，由受訪服務單位自填），社區居住最便宜，平均每人每月服務成本新台幣 17,638 元，
次為團體家庭 20,920 元，最貴為教養院的 28,067 元。以陽明教養院為例，分析其 2015 年預算，
一名服務使用者(含日間、住宿) 一個月預算為 83,496 元; 進一步分析其 2016 年預算 2.99 億元，
對比服務人數 357 人，初估服務一人一年約需 83 萬 7 千 5 百多元。
遺憾的是，中央政府從未正視國際潮流與客觀事實，從未積極提出更有效之去教養院政策措施，
甚或 100 床以上的教養院仍然持續成長。總而言之，目前台灣障礙者居住的政策立場：重教養
院輕社區居住，違反國際潮流。
一、補助不同，社區居住政策無誘因
至 2015 年，全日型教養院 165 間，實際服務 13,336 人；然而，社區居住方案 101 家戶，
服務約 400 人。同為居住服務，然而，社區居住補助卻少於教養院補助，致使非營利社會
福利組織不願意經營此方案。生活品質更好，補助卻更少，實違反常理。
二、以申請審查制管控社區居住方案發展
教養院依需求給予補助，只要有服務使用者就有補助，不限服務量，亦可永續居住永續經
營。反觀，社區居住以申請審查制實施，限定家數，並限定居住年限，作為方案管控，限
制政策發展。
三、缺乏多元社區居住方案
各縣市普遍缺乏到宅社區居住支持方案、缺乏社區居住個人助理方案、缺乏完整的社區居
住輸送系統。
四、社會住宅排拒障礙者
社會住宅無法租賃給經營社區居住之法人、非中低收入戶之障礙者無力負擔社會住宅租
金、缺少無障礙社會住宅存量、社會住宅離障礙者工作場域太遠。
伍、本聯盟主張
1. 依循聯合國障礙者公約之初次與每四年國家報告進程，衛福部需具體提出障礙者社區居住
發展策略。

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2. 與國際潮流接軌，衛福部應提出台灣去教養院之具體時程與轉型機制。
3. 建立政策誘因，以權利與需求為導向，提高社區居住方案補助，以鼓勵非營利組織經營，
以維護障礙者社區居住權益。
4. 內政部應修改住宅法，讓經營社區居住方案之法人可以承租社會住宅，並推動租賃市場法
制化，以利該方案具穩定承租之根基。

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Appendix 1 The Right to Community Living for People with Disabilities Public Hearing
The Right to Community Living for People with Disabilities
Public Hearing
October 2, 2015
(1) The Right to Living is a Basic Human Right
Since 1985, the United Nations has designated the first Monday of October of every year as World Habitat
Day, and proclaimed on the basic right of all to adequate shelter. The Convention on the Rights of Persons
with Disabilities, CRPD, was adopted on December 13, 2006, with article 19 stating, “Persons with
disabilities have the opportunity to choose their place of residence and where and with whom they live on an
equal basis with others and are not obliged to live in a particular living arrangement”.
Taiwan passed the ‘Housing Act’ on November 3, 2011, and thus proclaimed the right to living is a basic
human right and that all citizens should be entitled to appropriate housing. Taiwan became an UNCRPD
signatory on August 1, 2014, and this suggested that the Convention would have legal effect within Taiwan.
As a result, all levels of the government must be responsible for planning, promoting and implementing all
the details within the Convention. In addition, the passing of ‘People with Disabilities Rights Protection Act’
back on June 5, 2007, stated in article 50 that all levels of government must provide community living
services.

(2) Independence is the Core of Human Rights
Independence, a symbol of freedom and self-determination, is the core of human rights. Prior to the 1950’s,
western countries provided mostly institution care for people with disabilities and then gradually moved
toward community-based care in the 1960’s. Soon after the Independent Living Movement during the 1970’s,
the United States established the National Council on Independent Living in 1982 and in 1989, 14 European
nations established the European Parliament Independent Living Resolution. Both of these organizations
have actively advocated for individuals with disabilities on the right to choose and decide to stay in the
community, and to live socially included and independently with the assistance from the support services
provided by social welfare organizations.

(3) Community Living is a Global Trend

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Since the 1960’s, the United Nations has been actively promoting the development of social service
approaches that move toward deinstituionalization of services. Sweden and Norway completely transitioned
from instituion-based services to community-based services in 1993 and 1995, respectively, and the British
white paper on the topic at that time stated that all institutions must be closed by 2004. The United States has
closed or transitioned out of institutions with 16 or more beds, focusing on community living service models
with four or fewer people. Japan has prohibited the establishment of 24-hour care institutions, while
incentivizing institutions to transition to community-based services. As illustrated, community living services
is a global trend.
(4) Taiwan Refuse to be a Part of the Global Trend
In a 2007 study on the three types of residential model in Taiwan (more than 100 beds are considered
institutions; under 50 beds are considered group homes; and under six residents are considered community
living units), it stated that residents who live in community living units have higher quality of life (more
choices on the activities given, and less standardized activities) and staff have higher work satisfaction (more
self-determination).
This study has also shown that the overhead cost of community living programs is relatively less than
institutions. Comparing the cost of the three types of residential model (amortization of land and building not
included, and surveys completed by the service providers), community living is the least expensive (service
fee on an average of $17,638 NTD per month per person), while group homes rank second ($20,920 NTD)
and institutions being the most expensive ($28,067 NTD). Take Yang Ming Institution for example, a service
user needs about $83,496 NTD per month (daycare and residential services included). The institution
projected its annual budget for 2016 to be $299 million NTD for all 357 of its service users. This works out
to be approximately $837,500 NTD a year (USD $27,016) per service user.
Sadly, the central government has never taken the global trend and objective fact seriously, and thus has
never actively propose any effective deinstitutionalization policy. In fact, the number of institutions with
more than 100 beds are still growing. Taiwan’s standpoint on the living of people with disabilities still
remains heavily on institution-based services, more so than community-based services, and this completely
counters the mainstream values of the international community.
A. Different subsidies, no incentives in community living policy
As of 2015, there are 165 24-hour institutions, providing services for 13,336 service users. Only 101
units are under the community living program, providing services for approximately 400 service users.

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Even though both are a form of residential services, community living programs receive far less subsidy
than institution-based services, and therefore, discouraging social welfare organizations to undertake
community living programs. It is unconventional that a program resulting higher quality of life receives
less subsidy.
B. Strict examination of program’s applications, thus hindering the development of program
Subsidies in institution-based services are determined by its needs. The government will grant subsidies
based on the number of service users, regardless of the total intake, to reach sustainability. However,
applications to community living programs are under strict examination. The number of units and
duration of the program are restricted, and therefore hindering the development of policy and program.
C. Lack of program alternatives
Most counties and cities lack home-based community living support programs, personal assistant
programs, and comprehensive community living service delivery systems.
D. Social housing rejects people with disabilities
Social housing prohibits social welfare organizations as juridical persons applying on service users’
behalves. The rent is not affordable for people with disabilities who earns higher than low-medium
income. There is a lack of accessible housing. Social housing is located too far away from work for
people with disabilities.
(5) The Consortium’s Proposition
1. Adhere to the UNCRPD’s reporting process (the first and every four years). The Ministry of Health
and Welfare must propose specific development strategies in regards to community living of people
with disabilities
2. Be a part of the global trend. The Ministry of Health and Welfare should propose a timeline for
deinstitutionalization of services and procedures for service model transition.
3. Establish policy incentives based on rights and needs. Increase subsidy for community living
programs and encourage social welfare organizations to undertake the programs as a form of
ensuring living rights of people with disabilities.
4. The Ministry of Interior should amend the Housing Act so that social welfare organizations who
run community living programs can act as juridical persons to apply housing on service users’
behalves. In addition, the housing rental market must be regulated under the legal system so that
community living programs are protected under the rental agreement.

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Appendix 2 Outcomes and Costs of Residential Services for Adults with Intellectual Disabilities
in Taiwan: A Comparative Evaluation
附錄二、台灣成年智能障礙者使用三種居住服務的成果與成本之比較評估研究
文/周月清
本文翻譯摘錄自陽明大學衛生福利研究所周月清教授等人之研究報告(刊載於 Yueh‐Ching
Chou, Li‐Chan Lin, Cheng‐Yuh Pu, Wan‐Ping Lee, Shu‐Chuan Chang (2008). Outcomes and Costs of
Residential Services for Adults with Intellectual Disabilities in Taiwan: A Comparative Evaluation.
Journal of Applied Research in Intellectual Disabilities, 21, 114‐125. 完整原文檔案請逕自與周月
清教授連繫索取(電子郵件信箱：choucyc@ym.edu.tw)；如欲引用，請註明英文原文出處。
前言
有很多研究關注「去機構教養化(deinstitutionalization)」之後對於智能障礙者的影響，在英國與美
國則有多個不同的研究關注在成果(outcomes)與成本(costs)上。許多已開發國家已達到關閉所有教養
院、或近乎關閉所有教養院的狀態，現今推動支持智能障礙者居住於社區或住在其家中的服務已是國
家的主流政策；然而，在台灣，教養院服務仍是政策發展的主軸。
「去機構教養化」在台灣仍很有爭議，現行的政府政策仍挹注相當高的補助在教養院(大型教養
院)上。不過，自 1990 年代初期起，台灣開始出現中型團體家庭(30 人以下)，而過去 5 年來，有團體
積極倡議與發展小型的住宿服務，提供 6 人以下的新型社區居住服務；相較於教養院，智能障礙者居
住在這些小型的社區居住單位，可以離原生的家庭較近。
一般來說，小型住宿服務呈現較正向的成果，這與去機構教養化的訴求是一致的，Perry 與
Felce(1994)的研究及其他多篇研究指出，包括機構規模、建築設計、服務地點、設施設備、職員比例、
及住宿服務的方式等，都會影響住民的生活品質；但是，單只有機構規模、或是只有服務地點位於社
區中、只有好的建築設計、只有高比例的工作人員，任何單一指標並不意味著就一定會有好的服務品
質。
有研究進行了以社區服務為基礎的小型住宿服務與大型住宿機構之成果比較，指出小型住宿服務
有較佳的成效，這些成效的指標包括：生活品質、住民個人選擇、社區融合、活動參與、與家人互動、
工作人員支持、與工作人員及其他住民的互動。另外有研究將焦點放在從教養院搬至社區或搬至社區
居住的住民之影響，包括適應行為、挑戰行為、社區生活獨立技巧、住民滿意度、活動參與、使用社
區設施、與家人朋友連繫、個人選擇等面向。
另也有對於教養院與社區居住服務的成本效益之研究，在不同型態的居住服務上有不同的發現。
Felce 等人(1998)發現在小型住宿服務單位中，有較高的工作人員成本，而其解釋為因為住民的重度障
礙而需要有工作人員高度的介入支持；Hatton 等人(1996)卻發現在使用資源(包括成本及工作人員比例)

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與服務品質的指標之間沒有關連。
本篇研究在評估受內政部補助之社區居住服務的成效，以及檢測與呈現台灣智能障礙者之不同住
宿服務型態之成本與成果，再者，個人特質與環境特質對於個別成果的關連亦納入研究中。
材料與方法
在台灣有三種住宿服務型態：大型機構(教養院超過 50 床)、團體家庭或社區家庭(小於 50 床)、
社區居住(6 床或以下)。在本研究中，將教養院定義為服務人數超過 100 人以上，通常位於郊區，與
當地社區隔絕；團體/社區家庭則定義為少於 50 人的住民，且於 1990 年後設立於社區的服務單位，多
半為擁有 3~4 層樓的住屋，或是位於同一層樓但橫跨 3~4 棟的公共住宅；社區居住則是由公部門於
2004 年底開始的服務(試辦 12 個家)，或是由非營利組織於 2000 年起經營(13 個家)的 6 人或 6 人以下
的住宿服務，服務對象為智能障礙者或精神障礙者，其居住於自宅或社區中，每個住民需與其他人共
享起居室，而這些房子由服務提供單位以租賃或購置方式取得。在本研究中對上述三種不同規模的住
宿服務進行研究分析，依變項為：(1)個人成果，包括住民的生活品質、住民可做的決定、社區融合、
與家人連繫的頻率、對住所與室友(roommates)/樓(房)友(housemates)的滿意度；(2)支持服務的提供，
包括物理環境、工作人員、及任何安排好的活動；(3)每個住民的每月服務成本，包括工作人員成本及
提供服務的花費。
參與者
本研究為橫斷性研究，邀請參與的住民分別有 113 位來自 25 個社區居住服務單位、113 位來自
35 個團體/社區家庭、及 113 位來自 20 個教養院，依據住民的障礙程度、年齡及性別進行配對；由住
民自身直接受訪，問題包括住民的生活品質、個人選擇、社區融合、與家人連繫、及其對住處的滿意
度，如果必要會透過主要照顧之工作人員協助受訪。第一線實務工作者及住宿服務管理者(或行政者)
也受邀參與部份受訪，包括成年智障者的個人特質、適切行為、服務提供與成本等。但在研究過程中
有部份服務提供者及住民未能連繫上，因此最後有 248 位住民(103 位來自社區居住服務、69 位來自
團體/社區家庭、76 位來自教養院)完成受訪；在 103 位來自社區居住服務單位的參與者中，主要是男
性，年齡界於 20~30 歲之間，伴隨中度智能障礙(詳參閱表一)。另外，社區居住服務平均每單位服務
4.7 人，團體/社區家庭平均服務 11.4 人，教養院的平均服務人數為 220 人，從表二中則可看出工作人
員與住民的比例分別為 1.8 人(社區居住)、1.0 人(團體/社區家庭)、0.5 人(教養院)。
表一：參與者(住民)之個人特質
特質
社區居住
(n=103)
團體/社區家
庭(n=69)
教養院
(n=76)
F or χ2
(post hoc test)
年齡平均數 28.6 30.5 29.5 1.05
標準差 7.6 8.9 8.0

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性別(%) 男性 77.7 60.9 72.4 0.15
女性 22.3 39.1 27.6
障礙程度(%) 極重度 9.7 7.3 7.9 0.08
重度 32.0 33.3 32.9
中度 41.8 50.7 46.1
輕度 16.5 8.7 13.2
適切行為平均數 241.1 257.0 133.2 9.56**
標準差 207.2 210.4 137.4 (1＞3*;2＞3*)
不適切行為平均數 91.7 94.9 126.7 12.37**
標準差 48.8 52.6 46.7 (1＜3**;2＜3*)
*P＜0.01; ** P＜0.001
表二：三種住宿服務模式的特質
變項項目
社區居住
(N=18),N(%)
團體 / 社區家庭
(N=8) ,N(%)
教養院
(N=19) ,N(%)
公立或私立性質
法定的 0(0) 2(25.0) 5(26.3)
非營利 18 5(62.5) 13(68.4)
公辦民營 0(0) 1(12.5) 1(5.3)
設立年代
1990 年以前 0(0) 2(25.0) 11(57.9)
1991-2000 年 2(0) 4(50.0) 7(36.8)
2001 年以後 16(100) 2(25.0) 1(5.3)
所在地點
都市 14(77.8) 5(62.5) 10(52.6)
郊區 4(22.2) 3(37.5) 9(47.4)
房子類型
公寓(flat) 9(45.5) 0(37.5) 0(0)
獨棟(house) 9(54.5) 6(37.5) 0(0)
教養院
(institution)
0(0) 0(0) 19(100)
其他(other) 0(0) 2(25.0) 0(0)
住民性別
男性 89(74.0) 166(48.8) 2403(59.2)
女性 27(26.0) 174(51.2) 1658(40.8)
平均服務人數 (範圍) 4.7(1-6) 11.4(11-39) 220(104-447)
工作人員與住民比例 /住民總數 1:1.77 / 113 1:0.9 / 375 1:0.48 / 4181
研究者透過內政部社會司取得住宿服務的提供者資料，並寄發說明信邀請參與，隨後寄上適應行
為量表(adaptive behavior scale, ABS)及問卷給予符合研究條件之成年智能障礙者的第一線服務人員，

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以協助智能障礙者進行訪談。本研究資料收集於 2005 年 7~9 月完成所有訪談。
在相關變項的測量工具上，行為測量採用台灣版之適應行為量表(adaptive behavior scale, ABS)，
包括兩部份：第一部份關注於十種不同的行為面向，如：獨立功能、溝通能力、自我決策、安全與個
人衛生、常識、休閒活動與職業活動，共計 100 個項目，分數從 0~100 分，分數越低表示適應行為較
差。第二部份包括人際關係及與他人相處這二個面向，計有 20 個項目，分數自 0~20 分，分數越高表
示不適應行為之程度越大。在個人成果測量之生活品質部份，採用 1993 年夏洛克博士與 Keith 博士發
展的生活品質量表(the Quality of Life Questionnaire, QOLQ)，包括：滿意度、增權/獨立性、能力/生產
性、社會參與/社區融合等40個項目，分數為40-120分。在住民個人選擇與決定部份，以1995年 Kearney
等學者發展的 RCAS 住處選擇評估量表(Residence Choice Assessment Scale)進行評估，在測量個人是否
可以選擇及主導其生活的關鍵部份，量表包括 25 項個人選擇問題，如：選擇睡覺時間、用餐時間、
穿什麼衣服、洗澡時間、個人隱私、選擇室友及參與家內活動、或是社會活動等，分數分布為 25 分(沒
有選擇)至 175 分(可全面選擇)。社區融合則採用社區設施使用量表(the Use of Community Facilities
Scale, UCFS)，測量多樣化的社區地點及住民參與的活動，包括使用/參與頻率、單獨使用/參與、或是
與朋友、室友、工作人員一同使用/參與，地點包括超市、購物中心、百貨公司、郵局或銀行、游泳池
或健身俱樂部、圖書館、餐廳、書店、美容院、唱片行、卡拉 ok、搭乘大眾運輸交通工具(公車、火
車、捷運、計程車)、網咖、參與寺廟或教會活動…等。在與家人連繫指面對面與家人互動連繫的頻
率，問題為「你/妳多久拜訪你/妳的家人? 或是你/妳的家人多久拜訪你/妳?」另外，由研究團隊發展
出對於住民對其住處的滿意度，
詢問受訪者是否認為現在居住處是他/她的「家」?以及他/她們對住處的喜愛與否?是否喜歡室友?及是
否可以決定要不要搬來?能不能決定其室友為誰? 而在支持服務測量上包括物理環境、安排的活動、
工作人員比例三個面向。又，服務成本測量此指每月每位住民的服務支出，包括：工作人員費用、每
日日常支出、設施設備費、租金、水電費、瓦斯費、電話費、房屋修繕費、健康保險費、食物費用、
交通費用、員工進修費、行政費用等。
研究結果
從表三可看出在社區居住的住民有較佳的個人成果，不過，社區居住與團體/社區家庭之住民，在
個人選擇上沒有統計上的差異。表四則是顯示住民對「家」的認定與服務提供的看法，社區居住與團
體/社區家庭之住民，對於住處與室友有較高的滿意度，但是三種型態的住民，都無法自己決定要搬到
哪種特定服務單位，或是決定其同住室友為誰。在表五中則是呈現三種住宿服務型態在物理環境上的
差異，建物部份以社區居住最佳；表六中亦可看出，社區居住的住民有較多個人活動安排的選擇，以
及較少的制式化安排活動；表七則清楚呈現服務成本，平均每人每月服務成本從社區居住的新台幣
17,638 元至教養院的 28,067 元。又，研究發現，未參與在日常活動的住民有較低的生活品質，且在個
人選擇的面向獲得較低的分數。

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表三：三種居住服務型態之個人成果
成果
社區居住(n=103) 團體/社區家庭
(n=69)
教養院
(n=76)
F
(post hoc test)
平均數標準差平均數標準差平均數標準差
生活品質 84.2 8.8 78.1 10.4 72.8 8.8
8.9**
(1 ＞ 2*;1 ＞
3**)
個人選擇 120.9 18.5 111.7 13.5 84.3 19.8
20.9***
(1 ＞ 3**;2 ＞
3**)
社區融合 20.0 8.8 14.5 5.4 12.6 8.4
8.3***
(1 ＞ 2*;1 ＞
3**)
家人連繫 2.5 0.8 2.1 0.9 1.9 0.8
5.1**
(1 ＞ 2*;1 ＞
3**)
*P＜0.01;**P＜0.001.
表四：對家的認定及對服務的看法(N=248)
社區居住
團體/社區
家庭
教養院 F(Scheffe) χ2
你認為”這裡”是你的家嗎? 1
(%)
0.83 0.68 0.42 32.07**
你喜歡住在”這裡”嗎?2
(平均數/標準差)
3.51/0.68 3.42/0.95 3.04/1.06
6.62*
(1＞3*)
你喜歡你的室友嗎? 2
2.99/1.54 3.22/1.12 2.87/1.12 1.31
你喜歡你的其他房友嗎? 2
2.53/1.51 0.90/1.55 0
86.82**
(1＞2**;1
＞3**;2＞
3**)
是你決定搬來”這裡”的嗎? 1
(%)
0.11 0.06 0.07 1.66
是家人決定搬來”這裡”的 1
0.48 0.55 0.72 11.17*

373

(%)
是工作人員決定搬來”這裡”的 1
(%)
0.46 0.30 0.18 14.93*
是其他人決定搬來”這裡”的 1
(%)
0.01 0.09 0.05 5.99
你自己找到室友(roommates)的
嗎? 1
(%)
0.15 0.13 0.04 5.54
你有多少室友? 2
(平均數/標準差) 1.45/1.37 2.04/1.34 4.50/3.30
46.79**
(1＜3**;
2＜3**)
你可以換室友嗎? 1
(%)
0.35 0.57 0.34 9.89*
你自己找到房友(housemates)的
嗎? 1
(%)
0 0 0
你可以換房友嗎? 1
(%)
0.25 0.16 0 22.03**
*P＜0.01;**P＜0.001; 1
回答”是”的百分比; 2
4=very much; 3=yes; 2=no; 1= not at all
表五：物理環境
設施
社區居住(N=25) 團體/社區家庭
(N=33)
教養院
(N=19) F(Scheffe)
物理設施 55.7 5.6 55.3 2.3 51.9 4.3
5.3*
(1 ＞ 2*;1 ＞
3**)
建物 75.9 8.6 63.8 10.6 64.5 5.5
14.9**
(1 ＞ 2**;1 ＞
3**)
可及性 75.8 9.1 76.3 6.9 91.2 7.2
27.2***
(1 ＜ 3**;2 ＜
3**)
*P＜0.01;**P＜0.001.
表六：活動安排與工作人員

374

提供者
社區居住
(N=25)
團體/社區家
庭(N=33)
教養院
(N=19)
F 或 χ2
安排的團體活動(%) 96.0 100 94.7 5.17
個人許可的活動(%) 60.0 3.0 5.3 33.76**
每日生活流程(%) 52.0 69.7 94.7 30.11**
夜間工作人員(%) 88.0 100 100 6.49
過夜工作人員(%) 84.0 100 100 8.78
工作人員平均每日工作時數
9.2/4.8 9.2/1.3 10.1/2.7 0.60
工作人員平均每週工作時數
33.6/19.5 41.7/15.1 61.4/92.2 1.89
*P＜0.01;**P＜0.001.
表七：住處及相關照顧的每月成本(單位=新台幣)
成本
社區居住(N=181
) 團體/社區家庭
(N=81
)
教養院
(N=191
) P 值 2
Post
hoc
test3
工作人力 9462 4067 13345 16654 15793 10828 0.02
每日支出 215 299 271 429 397 473 0.53
設施設備 1671 2246 989 1342 2255 5936 0.78
租金 1378 1939 0 0 165 553 0.06
水電瓦斯 483 458 414 266 548 290 0.42
電話費 108 98 73 60 100 69 0.71
房屋修繕 331 396 410 403.5 1072.0 1907 0.07
保險費 165 329 466 523.6 368.2 438 0.05
食物費用 2317 2105 2246 2187.4 2254.3 1706 0.93
交通費 240 480 182.7 250.0 152.1 169 0.90
工作人員
服務訓練
72 196 724 793 264 793 0.02 1＜3*
行政費用 151 262 685 1436 464 989 0.83
其他支出 751 1216 813 1276 3835 4183 0.01 1＜3*
總額
17,638
(9919-3055
6)
4466 20,920
(8925-5450
1)
14415 28,067
(10334-545
01)
11340 0.002 1 ＜
3**

375

1
提供者;2
以 Kruskal-Walls one-way 分析; 3
以 Mann-Whitney U-test 分析; *P＜0.01;**P＜0.001.
研究討論
本研究發現，居住於社區居住的智能障礙者，其經驗到較多的選擇、有較好的生活品質、較多的
社區融合與參與、與家人互動的頻率較高、對其住處有較高的滿意度、有較少室友、且與其他房友的
相處亦較愉快，這樣的發現與西方文獻相似。然而，這三種住宿服務模式的住民都較少有機會自己做
選擇，多半是由家人或是工作人員為其做決定，包括住在哪裡及與誰同住。
然而，令人意外的是，社區居住及團體家庭，其居住環境的設備都未及教養院，這可能與台灣法
令中規定教養院需達一定的設施設備標準，且可從政府單位獲得相當金額的補助以添置院內的設施設
備相關。
又，如表六中呈現的資料，這三種住宿服務都仍較缺乏支持個人自由決定是否參與團體活動，或
是在住處內使住民擁有其個人選擇，此三種住宿服務模式仍偏向有固定生活流程、固定的住民團體活
動，以及強調醫療照顧部份；再者，團體家庭及教養院都在法令的要求下，於工作人員比例上達到法
令補助規定，不論是夜間或過夜的工作人員比例都達足額。而從表七中亦可看出，教養院服務模式的
成本高於另外兩種服務模式，然而，即使它是最耗費成本的服務，卻並未相對帶來較好的住民個人成
果，或是提供較高的支持服務。
最後，本研究結果強烈建議，成年智能障礙者應居住於小型社區住宿服務單位，使其有較多機會
接近社區設施，且相較於教養院的住民，有更高的頻率與家人互動連繫，與較高的生活品質。而本研
究亦發現，居住於規模較小(人數較少)的住宿服務單位的住民，有較佳的適切行為，因此若智能障礙
者自我選擇居住於社區的小型住宿單位，本研究建議應該提供其支持服務。然而，本研究亦建議未來
以長期追蹤研究以更進一步發現居住環境與支持安排對於智能障礙者的個人成果在社區小型住宿服
務與團體/社區家庭及教養院之間的不同。

376

Appendix 3 Analysis of Types and Costs of Housing and Support Services for Adults with
Disabilities in Taiwan
附錄三、台灣成年障礙者住宿服務樣態與服務費分析
100.02 製表
服務樣態與服務費分析
以服務對象為智能障礙中度獲得 3/4 補助，在台北接受服務為例
現行補助情況收費標準單位別政府補
助
等級個案自付
A
類
夜間型住宿
＋日間勞政就業服務
托育養護費
（夜間 40％）
＄7,750 夜＄5,813 3/4
＄1,937
0 日 0
B
類
社區居住
＋日間勞政
身障生活津貼＄5,000 日＄3,000 ＄2,000
0 夜 0
C
類
夜間型住宿
＋日間服務方案
托育養護費
（夜間 40％）
＄7,750 夜＄5,813 3/4
＄1,9370 日 0
D
類
社區居住
＋日間服務方案
身障生活津貼＄5,000 日＄3,000
＄2,0000 夜 0
E
類
社區居住
＋日間機構服務
托育養護費
（日間）
因日間已申請
托育養護費補
助，無法再申
請津貼
＄11,625 日＄8,719 3/4 ＄2,906
＄5,000 夜 0 ＄5,000
小計＄16,625 ＄8,719 ＄7,906
F
類
全日型住宿托育養護費＄19,375 日/夜＄
14,531
3/4 ＄4,844
說明：
1. 以 95 年度身心障礙福利機構教養養護費收費標準計算。
2. 以同類型之服務比較結果，接受社區居住服務個案所需自行支付的費用皆較其他高。例如雖 A、B
類或 C、D 類組間差異不大，但社區居住仍須支付稍高費用。
3. 特別是 E 類服務更須支付高於 F 類之全日型服務。
4. 綜述 2、3 點反映出現行對個案的補助標準是鼓勵個案留在教養院，而非符合現行趨勢是社區化之
服務模式。

377

機構現行獲得補助經費比較（以重度服務對象為例，以最高額補助為基準）
補助類型機構式
（夜間型）
社區居住方案說明
硬
體
設
備
身心障礙機構及建物
補助
 建築費
 依建築  租金補助每月最高
2 千元/人/月
 開辦費  ＄150,000/床  ＄300,000/一次
 充實身心障礙機
構設施設備
 ＄50,000/床  ＄20,000/人（申請
滿五年後）
 修繕費  ＄4,500/平方公尺無
 公共安全設施設
備
 ＄20,000/床無
服
務
費
教養機構服務費  ＄12,000/月  ＄11,500/月以甲級教保人
員計
托育養護補助費  ＄6,000/月（以重度
75％計，夜間 40％）
無社區居住服務
不得申請托育
養護費服務對象自付額  ＄2,000/月（補助差
額應自付之夜間 40
％）
 ＄5,000/月（最高）
津
貼
身心障礙年金（與托
育養護補助費二擇
一）
 ＄4,000/月  ＄4,000/月
1. 現行補助方式採一次審核，若在審核後當年度搬家，所產生的相關費用如房租異動、修繕、
設備等則不再補助，建議能依機構提出之修正計畫調整補助。
2. 已獲得補助的社區居住服務方案，次年後補助經費最高上限為 80%。

378

Appendix 4 Community Living in Taiwan: Development and Challenges
附錄四、台灣社區居住方案的發展與挑戰
支持障礙者在社區過個好生活
Supporting Good Life in the Commuity for People with Disability
文：台灣社區居住與獨立生活聯盟林子靖
審稿：陽明大學衛福所周月清教授、心路基金會張淑娟
英文翻譯：瑪利亞基金會尤珮蓉
有鑒於台灣一直以來都只有教養院，或所謂需立案的 20 床以上社區家園可選擇，自 2001 年民
間開始倡議社區居住與獨立生活，思考台灣成年障礙者居住權利的議題。突破過去傳統機構團體居住
模式及須申請立案的限制，2004 年促成中央政府以方案補助方式，補助社福團體租賃一般房舍，提供
一個居住單位六人以下（也可以是一人）的居住服務，截至目前，全台共有約 100 個居住單位，400
多名心智障礙、自閉症及精神障礙者接受此方案或這種模式的居住服務。
歐美去機構化改革奠基於社會住宅政策
在 2001～2008 年間，一群實務工作者參訪挪威及荷蘭從機構居住模式搬回原來社區居住的成功
經驗，發現居住政策和提供適居的住宅是非常重要的配套措施。譬如，當居住在機構的住民要住到社
區居住時，公部門提供的社會住宅確保了最基本的居住權，而當時台灣並沒有「住宅法」，躺在行政
單位多年的「住宅法」草案，內容著重的是健全資本市場的運作，而非居住人權。
於是實務工作者陳美鈴與學者周月清教授，開始積極介入住宅法的立法倡議，草擬社會住宅章
及反歧視條款，2007 年共同發起成立台灣社區居住與獨立生活聯盟，當時，「社會住宅」是一個全新
的名詞，全新的概念，台灣僅有針對各種身分別所推動的住宅政策，例如：勞工住宅、軍公教住宅、
原民住宅、青年住宅，以及針對一般所得的「國宅」，提供經濟最弱勢租賃的「平價住宅」，這些住宅
普遍品質不佳，以致民眾並不喜歡這類政府推動的住宅，然而，由於經濟持續衰退，物價上漲，高房
價壓力終至引爆民怨，時任社區居住聯盟的常務理事陳美鈴認為，「社會住宅」倡議時機已到，2010
年邀請荷蘭阿姆斯特丹社會住宅聯盟資深督導 Jeroen van der Veer 來台舉辦研討會，同年，聯合 OURs
與崔媽媽基金會，共同發起成立台灣社會住宅推動聯盟，終於在 2012 年促成「住宅法」立法(陳美鈴
台灣社會住宅運動源起, 2011)。
「住宅法」中「社會住宅章」的條文揭示所支持的對象，除了經濟弱勢者外也納入社會弱勢者，
例如老人、身心障礙者、家暴受害者、愛滋病感染者等，過去這類弱勢者僅能選擇進入機構或自行在
租屋市場求生存，「社會住宅」將使他們有機會可以選擇在一般社區中生活並接受適當的社會福利扶
助。
台灣身障者居住服務概況
台灣身心障礙福利機構的定義，29 人(32 家)以下為小型；30~200 人(115 家)為中型，201 人以上

379

(11 家)為大型，這類提供夜間住宿或全日型的服務機構呈現逐年成長的趨勢，如 2008 年 150 家，2014
年成長至 165 家，實際安置人數 13,495 位，另，根據 2009 年身心障礙者生活狀況及各項需求評估調
查報告，除了身心障礙福利機構，加上養護機構、護理之家等，總計安置 7 萬 3,994 人占 6.82%，意
即有 100 萬 7,283 人占 92.84%是居住在「家宅」。(2014 年台灣身障人口總計 1,141,677 人)
因此，可得知身障者主要的照護者是家人，但隨著少子化、人口老化及低薪的影響(身障者家庭
約 45.91%「支出大於收入」)，而「長期照顧法案」直到今年(2015)才立法通過，且未規畫適當的財
源，未來身障者的居住權利，實在令人擔憂。
2012 年台灣也開始使用 ICF(國際健康功能與身心障礙分類系統)做為障礙類別的評估與鑑定，原
本期待透過 ICF，將有助了解台灣障礙者對居住服務型態的需求，遺憾的是，ICF 評估人員大多不了
解社區居住服務內涵，針對家長、障礙者詢問，僅以提供身心障礙者個人照顧服務辦法的條文應付。
根據周月清教授的研究，ICF 在台灣的實施有諸多爭議，理念上，是期待能評估出障礙者環境因素及
其社會參與需求；實務上，卻是據以限制補助項目，例如，部份縣市已將 ICF 評估標準與社區居住服
務連動，未來重度、極重度障礙者將被排除取得這項服務。
政策上對社區居住服務也是看不到支持與促進，例如：
1) 社區式服務補助少於機構式
2) 機構轉型是以懲罰取代獎勵
3) 政府未編列固定財源而是以公益彩券回饋金支應
4) 補助逐年降低(如房租原以家戶計，上限 2 萬/月，改以人頭計，2 千/人/月)
5) 部份地方政府限制接受社區居住服務年限
6) 要求居住空間符合機構式設施設備標準
7) 研擬中的機構托育養護費補助辦法修正草案，限制接受社區居住服務者障礙程度為輕度、中
度者
凡此種種措施，均與各國經驗相悖。
按照美國的定義，16 人以上為教養院，六人以下為團體家庭，在英國三人以上，十人以下為團
體家庭，一般社區居住則是三人以下，台灣社區居住推動使用較寬鬆的定義，將社區居住界定為六人
以下做為規劃，但卻沒有辦法得到政府穩定的財源補助（如托育養護費），致使方案是比較有社會承
諾的單位，不計成本的來倡議與實踐(周月清，2005d)。
據了解，承辦方案的單位，一個居住單位扣除補助後，每年需自籌 20-30 萬元補貼各項開銷，
例如公共安全保險費、消防安檢費用、人事及行政費、房租補助不足補貼的費用等，相較於大型機構，
現行政策確實促使社福單位往機構設立而非社區化服務發展。
住宅權利與社區融入
由於上述政策因素，社區居住方案的租屋更形困難，台灣住宅普遍有違建，消防安檢也不確實，
方案補助條件要求這些都必須符合規定才得申請，曾有偏鄉社福單位表示：當地幾乎找不到沒違建的

380

房子！
一份由社區居住聯盟針對方案承辦的 24 個單位(總共有 44 個單位)進行訪談調查發現，都會區的
鄰里關係較不友善，例如曾以透過向公部門申訴、施壓，企圖阻止障礙者租住在其社區；或藉由社區
管委會施壓房東，不要租給承辦單位；也有部分房東因了解障礙者租屋不易，反年年調漲房租；此外，
不配合房屋修繕、拒絕提供消防安檢證明等，均造成方案推動的障礙，而這種種情形，政府的角色是
完全不見的，都由承辦單位一肩扛起。
更令人沮喪的是，好不容易催生了社會住宅，法規卻限定必須是自然人才可以承租，方案承辦
單位無法以法人身份，為服務對象申請，然而，心智障礙、自閉症及精神障礙者有其特殊性，大部分
仍需要專業工作者的支持373
。
例如，去年(2014)一對智能障礙青年結婚了，因為有固定收入，所以希望能以自己名義向房東租
屋，但房東還是不放心與智障者本人簽署租賃契約，因此還是透過社福單位代理。
台灣高房價、缺乏健全的租屋市場機制也阻礙障礙者追求獨立生活權利，加上對身心障礙者的
不認識，對人差異性缺乏尊重，實務工作者坦言，部份低支持密度的服務對象，其實有意願自行租屋
獨立生活，但擔心萬一失業無法支付房租，只好選擇繼續接受方案扶助，他們非常期待社會住宅可以
在「可負擔」的條件下，讓他們早日獨立。
獨立生活的美好
雖然在政策面看見重重阻礙，但在實務面卻看見美好的經驗不斷再發生。而這些成果以具信效
度的生活品質量表(Schalock, 2004; Personal Outcome Scale,POS 荷蘭 Arduin 基金會)，是可以被呈現
的。研究顯示，住在六人以下社區居住的住民生活品質比住在教養院、六人以上團體家庭高，而且比
較便宜 (Chou et al., 2008)；另一份針對六人以下社區居住住民兩年的追蹤研究，包含從教養院及原生
家庭搬出來的智障者，他們住在社區六人以下公寓，會比在教養院及家庭裡面生活品質高 (Chou et al.,
2011)；同時也比較工作人員的工作滿意度，工作人員在六人以下的社區居住的工作滿意度較高，因為
和住民彼此之間的互動是比較好的 (周月清、李婉萍、張意才，2007; Chou et al., 2010)
例如，智能障礙中度的小花，由於雙親都是身障者，20 幾年來，她被安置在各個教養機構，直
到 2010 年在瑪利亞基金會的協助下，和兩位教養院的朋友一起搬到一般的社區住宅中，開始學習獨
立生活，搭公車、買菜、自己煮飯、洗衣服、選擇自己喜歡看的電視節目。原本在教養院，常坐著無
所事事的小花，現在是宅配公司的正式員工，休閒時最喜歡玩電腦益智遊戲，甚至擁有近十萬元存款，
過年時，她在工作人員協助下，自己花錢搭機回金門探視父母，包紅包給父母，讓父母終於安心。

373
住宅法第第 3 條社會住宅……..專供一定所得以下之家庭或個人承租之住宅…..，此規範同樣見
諸於第 4 條、第 28 條，將承租資格排除社福組織等法人。社區居住聯盟建議，應修法補充：「社會
住宅…專供一定所得以下之家庭或個人及提供第 4 條特殊身份居住服務之法人承租之住宅，…….」
以利有心推動社區居住的組織，得更容易取得合適的房屋。

381

許多實務工作者從機構式服務轉換到社區居住服務，才發現障礙者的能力過去是被環境、教養
方式所限制，到社區後，只要適當的支持，她們可以和一般成年人一樣工作、休閒，甚至結婚成家。
雖然中央的態度較為消極，但在台中市、新竹市則看到去機構化的成果，這兩個城市，分別在
所轄區內已提供約 50 幾位障礙者此方案服務，等於取代了 50 床機構式的教養服務。
居住權應能回應 CRPD 精神
去年(2014) 台灣立法院通過聯合國身心障礙者權利公約施行法(UNCRPD)，其中第 19 條獨立生
活與融入社區，即規範障礙者有權利選擇在哪裡居住以及和誰居住，各國有責任發展社區居住及自立
生活方案，促使身心障礙者和一般人擁有平等機會融入社區，通過施行法後，國家須定期接受聯合國
督導及繳交相關執行報告。
本聯盟認為這是一個契機，也將是一個推力，讓我們定期檢視國家政策的作為，並更切實的邀
請障礙者參與倡議。過去，民眾對社會住宅缺乏認識，現在，隨著居住權利的覺醒，相信終能凝聚共
識，促成改革。
參考書目
周月清。（2005）。台灣智能障礙者居住服務探討—型態、規模、對象與變遷。台灣社會工作學刊，4，
33-75。
周月清、李婉萍、張意才。（2007）。住民社區居住與生活參與、選擇與自主：以台灣六個團體家庭成
年智障者為例。東吳大學社會工作學報，16，37-78。
Chou, Yueh-Ching, Lin, Li-Chan, Pu, Cheng-yun, Lee, Wan-ping & Chang, Shu-chuan (2008). Outcomes
and Costs of Residential Services for Adults with Intellectual Disabilities in Taiwan: a Comparative
Evaluation. Journal of Applied Research in Intellectual Disabilities (JARID), 21, 114-125.
Chou, Yueh-Ching, Kröger, Teppo & Lee, Yue-Chune (2010). Predictors of job satisfaction among staff in
residential settings for persons with intellectual disabilities: a comparison between three residential models.
Journal of Applied Research in Intellectual Disabilities (JARID), 23, 279-289.
Chou, Yueh-Ching, Pu, Cheng-yun, Kröger, Teppo, Lee, Wan-ping & Chang, Shu-chuan (2011). Outcomes
of a new residential scheme for adults with intellectual disabilities in Taiwan: a 2-year follow-up. Journal of
Intellectual Disability Research (JIDR), 55, 823-831.

382

Appendix 4 The Development and Challenges of Taiwan Community Living Program
Supporting Good Life in the Community for People with Disability
The Development and Challenges of Taiwan Community Living Programs
Written by Tzu-Chin Lin, Taiwan Community Living Consortium
Edited by Professor Yue-Ching Chou, National Yang Ming University Institute of Health and Welfare Policy;
Shu-Chuan Chang, Syin-lu Social Welfare Foundation
Translated by Amy Yu, Maria Social Welfare Foundation
Traditionally, large institutions and medium-sized group homes (under 20 beds) have been the only choices
for residential care. Beginning in 2001, an action group was organized by practitioners to advocate for
community residential services and independent living. This continual lobbying led to a change in 2004 in
the residential care model and the limitations in registering facilities. The central government began funding
a program that provided support for residential services for units with six residents and under (can also house
a single resident). To date, there are currently about 100 residential units, and more than 400 individuals with
intellectual disabilities, autism spectrum disorder, and/or mental illness use this type of residential service.
Social Housing Policy Acts as a Foundation for Deinstitutionalization in Western Countries
Between 2001 and 2008, a group of Taiwanese practitioners visited organizations in Norway and the
Netherlands that once offered institution-based services and have successfully emancipated their residents
into the community. Through these visits, practitioners realized that clear policy on residential care and
appropriate housing are keys to success in offering community residential services. For instance, if residents
from institution-based services want to transition into community-based services, the government should
secure basic living rights by offering them social housing. However, at that time, Taiwan did not have any
legislation regarding social housing. The closest was a draft on Housing Policy that focused primarily on the
operationalization of a healthy capitalist market, not about basic housing rights.
Therefore, practitioner Mei-Ling Chen and professor Yue-Ching Chou began actively involve in the
advocacy for the legislation of social housing, and drafted a bill on social housing and anti-discrimination.
Together with other like-minded practitioners and scholars, they established Taiwan Community Living
Consortium in 2007. At that time, ‘Social Housing’ was a brand new concept, and Taiwan only had housing
legislations for special groups, such as labor forces, military officials, civic workers, public school teachers,
aboriginals, youth, and low-income citizens. The quality of these inexpensive rental houses offered by the
government was poor and therefore, not a preferable choice for citizens who need them. With continual
economic recession, high inflation and housing prices, the executive director of Taiwan Community Living

383

Consortium, Mei-Ling Chen, sought a change. In 2010, Taiwan Community Living Consortium hosted a
conference for Dr. Jeroen van der Veer, vice director of the Amsterdam Federation of Housing Associations,
to speak on the Netherlands’ experience. The same year, together with OURs and Tsuei Ma Ma Foundation
for Housing and Community Services, came the establishment of Social Housing Advocacy Consortium.
With all these advocacy efforts, the bill on ‘Housing’ finally passed in 2012.
Prior to the passing of the Housing legislation, socially marginalized group such as older adults, individuals
with disabilities, domestic abuse survivors, and individuals with HIV/AIDS can only seek residential care
within large facilities or the rental housing market. ‘Social Housing’ gives them an opportunity to live in the
community with appropriate subsidy.
The Current Living Situation of Individuals with Disabilities in Taiwan
The definition of Taiwan’s welfare facilities for people with disabilities is as follows: 29 residents and under
(32 units) are considered small-sized facilities; 30-200 residents (115 units) are considered medium-sized
facilities; and 201 residents and above (11 units) are considered large facilities. Facilities that provide
residential or 24-hour services have increased over the years. Studies have shown that there were 150
facilities in 2008 and have increased to 165 facilities in 2014, accommodating 13,495 residents. And,
according to the 2009 research report on the living situation and needs assessment for people with disabilities,
other than welfare facilities for people with disabilities, care facilities and nursing homes all together provide
services for more than 73,994 service users. This is about 6.82% of the total population of individuals with
disabilities (1,141,677 citizens), which means that 92.84% (1,007,283 citizens) of the population lives at
home.
This shows that most of the caretakers for individuals with disabilities are family members. However, with a
low birth rate, an aging population, stagnant wages (about 45.91% of the families with individuals with
disabilities have expenses higher than their incomes), and Long-term Care legislation passed only recently
(2015), it is crucial that we continue to advocate for the living rights of individuals with disabilities, with
appropriate financial planning.
In 2012, Taiwan adapted the International Classification of Functioning, Disability and Health (ICF) as the
assessment and classification of health-related domains for people with disabilities. Initially, the anticipation
of ICF was that it would help interviewers understand the needs of residential care for individuals with
disabilities. Unfortunately, many of the ICF interviewers were not equipped with knowledge regarding
community residential services and proper interview techniques with parents and people with disabilities. In
fact, in professor Yue-Ching Chou’s study on the implementation of ICF in Taiwan has shown quite a

384

number of controversial issues since its inception. Ideally, the use of ICF would reveal the environmental
and social needs of the individual, but in actuality, it has limited the number of subsidies available for
him/her. Some counties and cities, for example, have even set a bar on the score of ICF, should the
individual wishes to apply for community residential services. This means that in the future, individuals with
severe and/or profound disabilities will not have access to this service.
Current policies on community residential care also do not show much support or promotion, for example:
1) Community-based services receive less subsidies than institution-based services
2) The transition of service model from institution to community settings is not encouraged with
rewards but instead, punishments.
3) There is no fixed budget on community residential services. Funding is only available through
charity lotteries.
4) Subsidies have decreased over the years (for example, rent was subsidized as units, but now as
headcounts)
5) Some local governments restrict the number of service years for community residential care.
6) Demand community residential facilities to comply the same standards as institutional facilities.
7) The current draft of the revision of ‘Residential care and subsidy plan’, imposing the restriction
that only people with mild and moderate disabilities can apply for community residential
services.
All of these policies have gone against the mainstream value of the international community.
According to the definition of residential facilities in the United States, units with 16 residents and above are
considered institutions, and units with six residents and under are considered group homes. In the United
Kingdom, units with three residents and above and units with 10 residents and under are considered group
homes, and units with three residents and under are considered community residential facilities. In Taiwan,
the definition of residential facilities is rather lax. Units with six residents and under are generally considered
community residential facilities, and most of them are self-funded by organizations with a strong social
mission. There are currently no fixed government funding allocated to this program (Chou, 2005d).
To our understanding, a residential unit self-funds around 200,000-300,000 NTD (after deduction from
government subsidy), approximately USD $6451-$9677, on additional expenses such as public safety
insurance fees, fire safety check fees, personnel and administrative fees, and rent. With the current policy and
the added-on expenses, it discourages social welfare organizations in offering community residential
services.

385

Given that all the community facilities must satisfy the conditions (such as public and fire safety) listed by
the program in order to receive subsidy, renting appropriate housing in community living programs pose
even greater difficulties. The prevalence of illegal building structures and loose fire safety checks resulted
many social welfare organizations, especially those in rural areas, unable to find appropriate housing.
One study conducted by the Taiwan Community Living Consortium on community residential facilities (44
units, hosted by 24 social welfare organizations) has shown that those situated in metropolitan areas have
poorer relationships with their neighbors. For example, many local residents have filed complaints and
pressured the local authorities in hope to prevent people with disabilities from residing in their neighborhood.
Some have gone to their community regulatory committees and pressured landlords not to rent their flats to
social welfare organizations. Others increase their rent every year, making it even more difficult for
individuals with disabilities to remain in the same neighborhood. In addition, those who refuse to provide
housing maintenance and fire safety checks have caused greater obstacles in program implementation. In the
midst of all of these difficulties, the government has taken no action, leaving host organizations largely on
their own.
Even with the newly enacted policy on social housing, the law prohibits social welfare organizations as
juridical persons applying on service users’ behalves, and limits applicants to only natural persons. This
creates more problems since most individuals with intellectual disabilities, autism spectrum disorders and/or
mental illness still need much support from professionals due to their special needs.
This can be illustrated in a case of a couple with intellectual disabilities that got married last year (2014).
Both of them have steady income and would like to rent flats on their own behalves. However, the landlord
still felt uneasy to sign rental contracts with the couple, and thus it was done through the social welfare
organization.
Taiwan’s high housing prices, the absence of regulated housing rental market, the lack of understanding on
the needs of people with disabilities, and the lack of respect for diversity all hinder the pursuit of independent
living for people with disabilities. Direct service workers have stated that some service users with low
support needs have desires to rent on their own behalves and live independently. However, many still choose
to stay in the program in fear of the possibility of losing their jobs and therefore unable to pay rent. Service
users hope that through ‘affordable’ social housing, they may be able to live independently soon.

386

The Beauty of Independent Living
Although there are many obstacles, great results are shown through the Personal Outcomes Scale (Schalock,
2004; Personal Outcomes Scale, POS Arduin Foundation). Studies have shown that residents who live in
community residential units (6 residents and under) have a higher quality of life than those who live in
institutions (6 residents and above). The cost of living is also comparatively lower (Chou et al., 2008).
Another two-year longitudinal study have shown that residents in units with six residents and under,
including those who transitioned from institutions to community residential units, have higher quality of life
than those who live in institutions and at home (Chou et al., 2011). At the same time, because community
residential units foster greater interactions with service users, support workers’ work satisfaction also have
increased (Chou, Lee and Chang，2007; Chou et al., 2010).
For example, ‘Hua’, a service user with moderate intellectual disabilities has been placed in various
institutional organizations for more than 20 years as a result of low family support (both of her parents are
individuals with disabilities). Then in 2010, under the assistance of Maria Social Welfare Foundation, she
moved into a community residential unit with two of her friends from the institution. She began learning how
to live independently: taking a bus, buying groceries, cooking, doing laundry, and choosing her favorite TV
programs. Compared to her mundane life back in the institution, she now works for a package delivery
company, plays computer games during leisure time, and even saved more than $100,000 NTD in her
account. During Chinese New Year, with the assistance of support workers, Hua bought her own airplane
ticket back to her hometown Kinmen county to visit her parents, gave them money allowances (as a form of
blessing in Chinese New Year), and made them felt honored and proud.
Many practitioners who have transitioned from institution-based services to community-based services have
found significant changes in the abilities of their service users. In the past, service users have been limited by
the institutional environment and care, but with proper support in the community, they can live a life like
most adults in the community (working, enjoying leisure activities, and even getting married).
Although the central government remains passive in this issue, there are still successful ‘de-institution’
experiences in the city of Taichung and Hsinchu. More than 50 service users are now using the program,
reducing individuals in institution-based services by 50.
Living Rights Reflect the Core Value of CRPD
Taiwan became an United Nations Convention on the Rights of Persons with Disabilities (UNCRPD)
signatory in 2014, which states in article 19, “Persons with disabilities have the opportunity to choose their
place of residence and where and with whom they live on an equal basis with others and are not obliged to

387

live in a particular living arrangement”. Once ratified, Taiwan must regularly accept supervision from the
United Nation and submit related reports.
Taiwan Community Living Consortium believes that the ratification of CRPD is an opportunity and a driving
force for advocacy and government policy change. In the past, the public lack understanding in social
housing, but now with the rising awareness of living rights, it is believed that consensus can be reached and
change can be done.
References
周月清。（2005）。台灣智能障礙者居住服務探討—型態、規模、對象與變遷。台灣社會工作學刊，4，
33-75。
周月清、李婉萍、張意才。（2007）。住民社區居住與生活參與、選擇與自主：以台灣六個團體家庭成
年智障者為例。東吳大學社會工作學報，16，37-78。
Chou, Yueh-Ching, Lin, Li-Chan, Pu, Cheng-yun, Lee, Wan-ping & Chang, Shu-chuan (2008). Outcomes
and Costs of Residential Services for Adults with Intellectual Disabilities in Taiwan: a Comparative
Evaluation. Journal of Applied Research in Intellectual Disabilities (JARID), 21, 114-125.
Chou, Yueh-Ching, Kröger, Teppo & Lee, Yue-Chune (2010). Predictors of job satisfaction among staff in
residential settings for persons with intellectual disabilities: a comparison between three residential models.
Journal of Applied Research in Intellectual Disabilities (JARID), 23, 279-289.
Chou, Yueh-Ching, Pu, Cheng-yun, Kröger, Teppo, Lee, Wan-ping & Chang, Shu-chuan (2011). Outcomes
of a new residential scheme for adults with intellectual disabilities in Taiwan: a 2-year follow-up. Journal of
Intellectual

388

Appendix 5 Community Living in Taiwan: Development and Challenges
附錄五、各縣市辦理成年心智障礙者社區居住與生活服務方案概況
縣市別執行單位單位數總計備註
臺北市
財團法人心路社福基金會附設臺北市心路社區
家園
2
8
1 個為自辦，其他
均為市府補助案，
其中 6 個居住單位
於 2015 年開辦
財團法人光仁社會福利基金會 1
財團法人中華民國自閉症基金會 3
財團法人第一社會福利基金會 2
新北市財團法人伊甸社會福利基金會 2 2
桃園縣
財團法人臺灣省私立啟智技藝訓練中心 10
11
2 個為市府補助
案，1 個為衛福部
補助案，其餘為早
期衛福部補助房
舍，以社區居住模
式服務
財團法人臺灣省天主教會新竹教區附設天使發
展中心
1
新竹縣
財團法人新竹縣私立天主教華光智能發展中心 2
4

財團法人喜憨兒社會福利基金會新竹分事務所 2
新竹市
財團法人新竹市私立天主教仁愛啟智中心 2
10
2 個為衛福部補助
案，8 個為市府以
多元居住服務專案
補助
財團法人新竹市天主教仁愛社會福利基金會 8
苗栗縣
財團法人苗栗縣私立幼安教養院 1
3

財團法人苗栗縣私立新苗發展中心 1
財團法人苗栗縣私立聖家啟智中心 1
臺中市
財團法人臺中市私立信望愛智能發展中心 2
16
1 個為自辦，8 個為
衛福部+市府補助
案，7 個為市府委
託補助案；另有 2
位市府「多元社區
居住外展服務」轉
銜至社區獨立生
活。
財團法人瑪利亞社會福利基金會 4
財團法人天主教會臺中教區附設立達啟能訓練
中心
5
社團法人臺中市智障者家長協會 1
財團法人向上社會福利基金會 3
社團法人臺中市自閉症教育協進會 1
彰化縣
財團法人彰化縣私立慈恩社會福利慈善事業基
金會(原慈沁)
1
4

彰化縣私立基督教喜樂保育院 2
財團法人天主教會臺中教區附設臺灣省私立慈
愛殘障教養院
1

389

2015.08 臺灣社區居住與獨立生活聯盟製表
南投縣
財團法人天主教會臺中教區附設南投縣私立復
活啟智中心
2
4

財團法人南投縣私立德安啟智教養院 1
社團法人南投縣康復之友協會 1
雲林縣
財團法人天主教會嘉義教區附設雲林縣私立華
聖啟能發展中心
1
2

社團法人雲林縣身心照護協會 1
嘉義縣
財團法人天主教會嘉義教區附設嘉義縣私立聖
心教養院
1
3

嘉義縣精神康扶之友協會(小太陽家園) 1
財團法人天主教會嘉義教區附設嘉義縣私立敏
道家園
1
嘉義市社團法人嘉義市智障福利協進會 1 1
臺南市
財團法人臺南市私立菩提林教養院 1
10
1 個為自辦，其餘
均為衛福部補助
案，其中 2 個房舍
由市府提供
財團法人天主教臺南市私立蘆葦啟智中心 2
財團法人天主教臺南市私立德蘭啟智中心 5
財團法人臺南市私立天主教瑞復益智中心 1
財團法人臺南市私立長泰教養院 1
高雄市
社團法人高雄市心理復健家屬關懷協會 3
12
2 個為市府補助
案，10 個為衛福部
補助案
樂仁啟智中心 1
財團法人喜憨兒社會福利基金會 2
財團法人心路社會福利基金會 3
社團法人高雄三山脊損傷重建協會 1
社團法人高雄市耕馨身心關懷協會 1
社團法人高雄市方舟就業服務協會 1
宜蘭縣財團法人蘭智社會福利基金會 3 3
花蓮縣黎明教養院 2 2
臺東縣
財團法人李勝賢文教基金會 2
4

社團法人臺東縣智障者家長協會 2
澎湖縣社團法人澎湖縣照顧服務協會 2 2
101 101

390

Appendix 6 Comparison of Community Based Living Program Subsidies Offered by Taiwan’s
Department of Health and Social Welfare and Various Local City and Country Governments
附錄六、衛福部及各縣市政府補助比較
類
別
補助項目衛福部臺中市臺南市新竹市臺北市
硬
體
設
備
房屋租金＄20,000/月(最
高)
傾向＄2,000/人
/月
再依所在地酌予
調整
＄3,500/人/月
服務 3～6 人為
限，最高每月支
付新臺幣 21,000
元整
＄20,000/月(最
高)，使用無償提
供之公有場地
者，不補助租金
依實核支/戶
現有六戶為市府提
供居住房舍，其餘三
戶為租屋
＄1,300/坪/月(最
高)，上限 100 坪(含
所有居住單位)
服務 6 人為限
每一案至少需承接
兩個居住單位
開辦費＄300,000/一次
(最高)
同衛福部同衛福部同衛福部至多＄600,000 (不論
成立之居住單位數)
充實設施設
備費
＄20,000/人 /5
年
＄30,000/戶/年無依實核支/戶
另核支火險、公共意
外責任險
內含於開辦費
人
事
補
助
專業服務費以服務對象支持
需求計：＄
6,400/人/月(最
高)
＄4,700/人/月
(最低)
以最多人數 6 人
計：＄
38,400~28,200/
12 月
專任教保員
＄30,000/人/12
月
兼任社工員
＄10,000/人/12
月
兼任督導＄
6,000/人/12 月
以服務對象支持需
求計：＄6,400/人/
月(最高)
＄3,400/人/月(最
低)
＄25,000(平均) x 人
x13.5 月
(以 103 年為例，9 個
家 40 位住民+5 位到
宅服務，共聘任 11
位工作人員+2 位部
份時制人員)
編列 3.5 人，含督導
0.5 人、社工 1 人及
教保員 2 人
＄42,923/人/12 月
月薪不得低於＄
22,639
大夜生活協
助費
＄7,200/居住單
位
無＄7,200/居住單位＄300/日/居住單
位，依實核支
＄300/日/居住單位
(最多 2 個)
最高不超過$18,600/
月
其
他
行政管理費無＄7,000/戶/月最高＄6,000/戶/
月
$100,000/年實際面積計算，每一
居住單位至多 50 坪
＄300/坪/居住單
位，每案至多 100
坪，每月至多＄
30,000。
在職訓練費無內含於行政管理
費
內含於行政管理
費
$40,000/年講師費最高＄
32,000/年
督導費最高＄
24,000/年
住民生活事
務費
無無無 $4,000/人/12 月(低收
入戶住民生活事務
費，依實支付)
無
活動費無內含於行政管理
費
內含於行政管理
費
無最多＄2,500/月
二代健保補
充保費
無無無無最多＄5,584/年
服務宣廣費無無無無＄200,000 (不論成立
之居住單位數)
2015.02 臺灣社區居住與獨立生活聯盟製表(2015.08 修正)

391

Appendix 7 The Convention on the Rights of Persons with Disabilities，CRPD
附錄七、身心障礙者權利公約
身心障礙者權利公約
前言
本公約締約國，
(a)重申聯合國憲章宣告之各項原則承認人類大家庭所有成員之固有尊嚴與價值，以及平等與
不可剝奪之權利，是世界自由、正義與和平之基礎，
(b)確認聯合國於世界人權宣言與國際人權公約中宣示並同意人人有權享有該等文書所載之所
有權利與自由，不得有任何區別，
(c)再度確認所有人權與基本自由之普世性、不可分割性、相互依存性及相互關聯性，必須保
障身心障礙者不受歧視地充分享有該等權利及自由，
(d)重申經濟社會文化權利國際公約、公民與政治權利國際公約、消除一切形式種族歧視國際
公約、消除對婦女一切形式歧視公約、禁止酷刑和其他殘忍、不人道或有辱人格的待遇或
處罰公約、兒童權利公約及保護所有移徙工人及其家庭成員權利國際公約，
(e)確認身心障礙是一個演變中之概念，身心障礙是功能損傷者與阻礙他們在與其他人平等基
礎上充分及切實地參與社會之各種態度及環境障礙相互作用所產生之結果，
(f)確認關於身心障礙者之世界行動綱領與身心障礙者機會均等標準規則所載原則及政策準則
於影響國家、區域及國際各級推行、制定及評量進一步增加身心障礙者均等機會之政策、
計畫、方案及行動方面之重要性，
(g)強調身心障礙主流議題之重要性，為永續發展相關策略之重要組成部分，
(h)同時確認基於身心障礙而歧視任何人是對人之固有尊嚴與價值之侵犯，
(i)進一步確認身心障礙者之多元性，
(j)確認必須促進與保障所有身心障礙者人權，包括需要更多密集支持之身心障礙者，
(k)儘管有上述各項文書與承諾，身心障礙者作為平等社會成員參與方面依然面臨各種障礙，
其人權於世界各地依然受到侵犯，必須受到關注，
(l)確認國際合作對改善各國身心障礙者生活條件之重要性，尤其是於開發中國家，
(m)承認身心障礙者存在之價值與其對社區整體福祉與多樣性所作出之潛在貢獻，並承認促進
身心障礙者充分享有其人權與基本自由，以及身心障礙者之充分參與，將導致其歸屬感之
增強，顯著推進該社會之人類、社會與經濟發展及消除貧窮，
(n)確認身心障礙者個人自主與自立之重要性，包括作出自己選擇之自由，
(o)認為身心障礙者應有機會積極參與政策及方案之決策過程，包括與其直接相關者，
(p)關注基於種族、膚色、性別、語言、宗教、政治或不同主張、民族、族裔、原住民或社會
背景、財產、出生、年齡或其他身分而受到多重或加重形式歧視之身心障礙者所面臨之困
境，

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(q)確認身心障礙婦女與女孩於家庭內外經常處於更高風險，遭受暴力、傷害或虐待、忽視或
疏忽、不當對待或剝削，
(r)確認身心障礙兒童應在與其他兒童平等基礎上充分享有所有人權與基本自由，並重申兒童
權利公約締約國為此目的承擔之義務，
(s)強調於促進身心障礙者充分享有人權與基本自由之所有努力必須納入性別平等觀點，
(t)凸顯大多數身心障礙者生活貧困之事實，確認於此方面亟需消除貧窮對身心障礙者之不利
影響，
(u)銘記和平與安全之條件必須立基於充分尊重聯合國憲章宗旨與原則，以及遵守現行人權文
書，特別是於武裝衝突與外國佔領期間，對身心障礙者之保障為不可或缺，
(v)確認無障礙之物理、社會、經濟與文化環境、健康與教育，以及資訊與傳播，使身心障礙
者能充分享有所有人權與基本自由之重要性，
(w)理解個人對他人與對本人所屬社區負有義務，有責任努力促進及遵守國際人權憲章所確認
之權利，
(x)深信家庭是自然與基本之社會團體單元，有權獲得社會與國家之保障，身心障礙者及其家
庭成員應獲得必要之保障及協助，使家庭能夠為身心障礙者充分及平等地享有其權利作出
貢獻，
(y)深信一份促進與保障身心障礙者權利及尊嚴之全面整合的國際公約，對於開發中及已開發
國家補救身心障礙者之重大社會不利處境及促使其參與公民、政治、經濟、社會及文化等
面向具有重大貢獻，
茲協議如下：
第 1 條宗旨
本公約宗旨係促進、保障與確保所有身心障礙者充分及平等享有所有人權及基本自由，
並促進對身心障礙者固有尊嚴之尊重。
身心障礙者包括肢體、精神、智力或感官長期損傷者，其損傷與各種障礙相互作用，可
能阻礙身心障礙者與他人於平等基礎上充分有效參與社會。
第 2 條定義
為本公約之宗旨：
“傳播＂包括語言、字幕、點字文件、觸覺傳播、放大文件、無障礙多媒體及書面語言、
聽力語言、淺白語言、報讀員及其他輔助或替代性傳播方法、模式及格式，包括無障礙資訊
及通信技術；
“語言＂包括口語、手語及其他形式之非語音語言；
“基於身心障礙之歧視＂是指基於身心障礙而作出之任何區別、排斥或限制，其目的或效
果損害或廢除在與其他人平等基礎上於政治、經濟、社會、文化、公民或任何其他領域，所

393

有人權及基本自由之認可、享有或行使。基於身心障礙之歧視包括所有形式之歧視，包括拒
絕提供合理之對待；
“合理之對待＂是指根據具體需要，於不造成過度或不當負擔之情況下，進行必要及適當
之修改與調整，以確保身心障礙者在與其他人平等基礎上享有或行使所有人權及基本自由；
“通用設計＂是指盡最大可能讓所有人可以使用，無需作出調整或特別設計之產品、環
境、方案與服務設計。
“通用設計＂不應排除於必要情況下，為特定身心障礙者群體提供輔助用具。
第 3 條一般原則
本公約之原則是：
(a)尊重固有尊嚴、包括自由作出自己選擇之個人自主及個人自立；
(b)不歧視；
(c)充分有效參與及融合社會；
(d)尊重差異，接受身心障礙者是人之多元性之一部分與人類之一份子；
(e)機會均等；
(f)無障礙；
(g)男女平等；
(h)尊重身心障礙兒童逐漸發展之能力，並尊重身心障礙兒童保持其身分認同之權利。
第 4 條一般義務
1. 締約國承諾確保並促進充分實現所有身心障礙者之所有人權與基本自由，使其不受任何基
於身心障礙之歧視。為此目的，締約國承諾：
(a)採取所有適當立法、行政及其他措施實施本公約確認之權利；
(b)採取所有適當措施，包括立法，以修正或廢止構成歧視身心障礙者之現行法律、法規、
習慣與實踐；
(c)於所有政策與方案中考慮到保障及促進身心障礙者之人權；
(d)不實施任何與本公約不符之行為或實踐，確保政府機關和機構之作為遵循本公約之規定；
(e)採取所有適當措施，消除任何個人、組織或私營企業基於身心障礙之歧視；
(f)從事或促進研究及開發本公約第 2 條所定通用設計之貨物、服務、設備及設施，以儘可
能達到最低程度之調整及最少費用，滿足身心障礙者之具體需要，促進該等貨物、服
務、設備及設施之提供與使用，並於發展標準及準則推廣通用設計；
(g)從事或促進研究及開發適合身心障礙者之新技術，並促進提供與使用該等新技術，包括
資訊和傳播技術、行動輔具、用品、輔助技術，優先考慮價格上可負擔之技術；
(h)提供身心障礙者可近用之資訊，關於行動輔具、用品及輔助技術，包括新技術，並提供
其他形式之協助、支持服務與設施；

394

(i)促進培訓協助身心障礙者之專業人員與工作人員，使其瞭解本公約確認之權利，以便更
好地提供該等權利所保障之協助及服務。
2. 關於經濟、社會及文化權利，各締約國承諾儘量利用現有資源並於必要時於國際合作架構
內採取措施，以期逐步充分實現該等權利，但不妨礙本公約中依國際法屬於立即適用之義
務。
3. 為執行本公約以發展及實施立法及政策時，及其他關於身心障礙者議題之決策過程中，締
約國應與代表身心障礙者之組織、身心障礙者，包括身心障礙兒童，密切協商，以使其積
極涉入。
4. 本公約之規定不影響任何締約各國法律或對締約各國生效之國際法中任何更有利於實現
身心障礙者權利之規定。對於依據法律、公約、法規或習慣而於本公約締約各國內獲得承
認或存在之任何人權與基本自由，不得以本公約未予承認或未予充分確認該等權利或自由
為藉口而加以限制或減損。
5. 本公約之規定應延伸適用於聯邦制國家各組成部分，無任何限制或例外。
第 5 條平等與不歧視
1. 締約國確認，在法律之前，人人平等，有權不受任何歧視地享有法律給予之平等保障與平
等受益。
2. 締約國應禁止所有基於身心障礙之歧視，保障身心障礙者獲得平等與有效之法律保護，使
其不受基於任何原因之歧視。
3. 為促進平等與消除歧視，締約國應採取所有適當步驟，以確保提供合理之對待。
4. 為加速或實現身心障礙者事實上之平等而必須採取之具體措施，不得視為本公約所指之歧
視。
第 6 條身心障礙婦女
1. 締約國體認身心障礙婦女與女孩受到多重歧視，就此應採取措施，確保其充分與平等地享
有所有人權及基本自由。
2. 締約國應採取所有適當措施，確保婦女獲得充分發展，提高地位及賦權增能，其目的為保
障婦女能行使及享有本公約所定之人權與基本自由。
第 7 條身心障礙兒童
1. 締約國應採取所有必要措施，確保身心障礙兒童在與其他兒童平等基礎上，充分享有所有
人權與基本自由。
2. 於所有關於身心障礙兒童之行動中，應以兒童最佳利益為首要考量。
3. 締約國應確保身心障礙兒童有權在與其他兒童平等基礎上，就所有影響本人之事項自由表
達意見，並獲得適合其身心障礙狀況及年齡之協助措施以實現此項權利，身心障礙兒童之
意見應按其年齡與成熟程度適當予以考量。
第 8 條意識提升

395

1. 締約國承諾採取立即有效與適當措施，以便：
(a)提高整個社會，包括家庭，對身心障礙者之認識，促進對身心障礙者權利與尊嚴之尊重；
(b)於生活各個方面對抗對身心障礙者之成見、偏見與有害作法，包括基於性別及年齡之成
見、偏見及有害作法；
(c)提高對身心障礙者能力與貢獻之認識。
2. 為此目的採取之措施包括：
(a)發起與持續進行有效之宣傳活動，提高公眾認識，以便：
(i)培養接受身心障礙者權利之態度；
(ii)促進積極看待身心障礙者，提高社會對身心障礙者之瞭解；
(iii)促進承認身心障礙者之技能、才華與能力以及其對職場與勞動市場之貢獻；
(b)於各級教育體系，包括學齡前教育，培養尊重身心障礙者權利之態度；
(c)鼓勵所有媒體機構以符合本公約宗旨之方式報導身心障礙者；
(d)推行瞭解身心障礙者及其權利之培訓方案。
第 9 條無障礙
1. 為使身心障礙者能夠獨立生活及充分參與生活各個方面，締約國應採取適當措施，確保身
心障礙者在與其他人平等基礎上，無障礙地進出物理環境，使用交通工具，利用資訊及通
信，包括資訊與通信技術及系統，以及享有於都市與鄉村地區向公眾開放或提供之其他設
施及服務。該等措施應包括查明及消除阻礙實現無障礙環境之因素，尤其應適用於：
(a)建築、道路、交通與其他室內外設施，包括學校、住宅、醫療設施及工作場所；
(b)資訊、通信及其他服務，包括電子服務及緊急服務。
2. 締約國亦應採取適當措施，以便：
(a)擬訂、發布並監測向公眾開放或提供之設施與服務為無障礙使用之最低標準及準則；
(b)確保私人單位向公眾開放或為公眾提供之設施與服務能考慮身心障礙者無障礙之所有面
向；
(c)提供相關人員對於身心障礙者之無障礙議題培訓；
(d)於向公眾開放之建築與其他設施中提供點字標誌及易讀易懂之標誌；
(e)提供各種形式之現場協助及中介，包括提供嚮導、報讀員及專業手語翻譯員，以利無障
礙使用向公眾開放之建築與其他設施；
(f)促進其他適當形式之協助與支持，以確保身心障礙者獲得資訊；
(g)促進身心障礙者有機會使用新資訊與通信技術及系統，包括網際網路；
(h)促進於早期階段設計、開發、生產、推行無障礙資訊與通信技術及系統，以便能以最低
成本使該等技術及系統無障礙。
第 10 條生命權

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締約國重申人人享有固有之生命權，並應採取所有必要措施，確保身心障礙者在與其他
人平等基礎上確實享有生命權。
第 11 條危險情況與人道緊急情況
締約國應依其基於國際法上之義務，包括國際人道法與國際人權法規定，採取所有必要
措施，確保於危險情況下，包括於發生武裝衝突、人道緊急情況及自然災害時，身心障礙者
獲得保障及安全。
第 12 條在法律之前獲得平等承認
1. 締約國重申，身心障礙者於任何地方均獲承認享有人格之權利。
2. 締約國應確認身心障礙者於生活各方面享有與其他人平等之權利能力。
3. 締約國應採取適當措施，便利身心障礙者獲得其於行使權利能力時可能需要之協助。
4. 締約國應確保，與行使權利能力有關之所有措施，均依照國際人權法提供適當與有效之防
護，以防止濫用。該等防護應確保與行使權利能力有關之措施，尊重本人之權利、意願及
選擇，無利益衝突及不當影響，適合本人情況，適用時間儘可能短，並定期由一個有資格、
獨立、公正之機關或司法機關審查。提供之防護與影響個人權利及利益之措施於程度上應
相當。
5. 於符合本條規定之情況下，締約國應採取所有適當及有效措施，確保身心障礙者平等享有
擁有或繼承財產之權利，掌管自己財務，有平等機會獲得銀行貸款、抵押貸款及其他形式
之金融信用貸款，並應確保身心障礙者之財產不被任意剝奪。
第 13 條獲得司法保護
1. 締約國應確保身心障礙者在與其他人平等基礎上有效獲得司法保護，包括透過提供程序與
適齡對待措施，以增進其於所有法律訴訟程序中，包括於調查及其他初步階段中，有效發
揮其作為直接和間接參與之一方，包括作為證人。
2. 為了協助確保身心障礙者有效獲得司法保護，締約國應促進對司法領域工作人員，包括警
察與監所人員進行適當之培訓。
第 14 條人身自由與安全
1. 締約國應確保身心障礙者在與其他人平等基礎上：
(a)享有人身自由及安全之權利；
(b)不被非法或任意剝奪自由，任何對自由之剝奪均須符合法律規定，且於任何情況下均不
得以身心障礙作為剝奪自由之理由。
2. 締約國應確保，於任何過程中被剝奪自由之身心障礙者，在與其他人平等基礎上，有權獲
得國際人權法規定之保障，並應享有符合本公約宗旨及原則之待遇，包括提供合理之對待。
第 15 條免於酷刑或殘忍、不人道或有辱人格之待遇或處罰
1. 不得對任何人實施酷刑或殘忍、不人道或有辱人格之待遇或處罰。特別是不得於未經本人
自願同意下，對任何人進行醫學或科學試驗。

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2. 締約國應採取所有有效之立法、行政、司法或其他措施，在與其他人平等基礎上，防止身
心障礙者遭受酷刑或殘忍、不人道或有辱人格之待遇或處罰。
第 16 條免於剝削、暴力與虐待
1. 締約國應採取所有適當之立法、行政、社會、教育與其他措施，保障身心障礙者於家庭內
外免遭所有形式之剝削、暴力及虐待，包括基於性別之剝削、暴力及虐待。
2. 締約國尚應採取所有適當措施防止所有形式之剝削、暴力及虐待，其中包括，確保向身心
障礙者與其家屬及照顧者提供具性別及年齡敏感度之適當協助與支持，包括透過提供資訊
及教育，說明如何避免、識別及報告剝削、暴力及虐待事件。締約國應確保保障服務具年
齡、性別及身心障礙之敏感度。
3. 為了防止發生任何形式之剝削、暴力及虐待，締約國應確保所有用於為身心障礙者服務之
設施與方案受到獨立機關之有效監測。
4. 身心障礙者受到任何形式之剝削、暴力或虐待時，締約國應採取所有適當措施，包括提供
保護服務，促進被害人之身體、認知功能與心理之復原、復健及重返社會。上述復原措施
與重返社會措施應於有利於本人之健康、福祉、自尊、尊嚴及自主之環境中進行，並應斟
酌因性別及年齡而異之具體需要。
5. 締約國應制定有效之立法與政策，包括聚焦於婦女及兒童之立法及政策，確保對身心障礙
者之剝削、暴力及虐待事件獲得確認、調查，並於適當情況予以起訴。
第 17 條保障人身完整性
身心障礙者有權在與其他人平等基礎上獲得身心完整性之尊重。
第 18 條遷徙自由與國籍
1. 締約國應確認身心障礙者在與其他人平等基礎上有權自由遷徙、自由選擇居所與享有國
籍，包括確保身心障礙者：
(a)有權取得與變更國籍，國籍不被任意剝奪或因身心障礙而被剝奪；
(b)不因身心障礙而被剝奪獲得、持有及使用國籍證件或其他身分證件之能力，或利用相關
處理，如移民程序之能力，該等能力或為便利行使遷徙自由權所必要。
(c)可以自由離開任何國家，包括本國在內；
(d)不被任意剝奪或因身心障礙而被剝奪進入本國之權利。
2. 身心障礙兒童出生後應立即予以登記，從出生起即應享有姓名權，享有取得國籍之權利，
並儘可能享有認識父母及得到父母照顧之權利。
第 19 條自立生活與融合社區
本公約締約國體認所有身心障礙者享有於社區中生活之平等權利以及與其他人同等之選
擇，並應採取有效及適當之措施，以促進身心障礙者充分享有該等權利以及充分融合及參與
社區，包括確保：

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(a)身心障礙者有機會在與其他人平等基礎上選擇居所，選擇於何處、與何人一起生活，不
被強迫於特定之居住安排中生活；
(b)身心障礙者享有近用各種居家、住所及其他社區支持服務，包括必要之個人協助，以支
持於社區生活及融合社區，避免孤立或隔離於社區之外；
(c)為大眾提供之社區服務及設施，亦可由身心障礙者平等使用，並回應其需求。
第 20 條個人行動能力
締約國應採取有效措施，確保身心障礙者於最大可能之獨立性下，享有個人行動能力，
包括：
(a)促進身心障礙者按自己選擇之方式與時間，以其可負擔之費用享有個人行動能力；
(b)促進身心障礙者享有近用優質之行動輔具、用品、輔助技術以及各種形式之現場協助及
中介，包括以其可負擔之費用提供之；
(c)提供身心障礙者及與其共事之專業人員行動技能培訓；
(d)鼓勵生產行動輔具、用品與輔助技術之生產者斟酌身心障礙者行動能力之所有面向。
第 21 條表達與意見之自由及近用資訊
締約國應採取所有適當措施，確保身心障礙者能夠行使自由表達及意見自由之權利，包
括在與其他人平等基礎上，通過自行選擇本公約第 2 條所界定之所有傳播方式，尋求、接收、
傳遞資訊與思想之自由，包括：
(a)提供予公眾之資訊須以適於不同身心障礙類別之無障礙形式與技術，及時提供給身心障
礙者，不另收費；
(b)於正式互動中接受及促進使用手語、點字文件、輔助與替代性傳播及身心障礙者選用之
其他所有無障礙傳播方法、模式及格式；
(c)敦促提供公眾服務之私人單位，包括通過網際網路提供服務，以無障礙及身心障礙者可
以使用之模式提供資訊及服務；
(d)鼓勵大眾媒體，包括透過網際網路資訊提供者，使其服務得為身心障礙者近用；
(e)承認及推廣手語之使用。
第 22 條尊重隱私
1. 身心障礙者，不論其居所地或居住安排為何，其隱私、家庭、家居與通信及其他形式之傳
播，不得受到任意或非法干擾，其尊榮與名譽也不得受到非法攻擊。身心障礙者有權獲得
法律保障，不受該等干擾或攻擊。
2. 締約國應在與其他人平等基礎上保障身心障礙者之個人、健康與復健資料之隱私。
第 23 條尊重家居與家庭
1. 締約國應採取有效及適當措施，在與其他人平等基礎上，於涉及婚姻、家庭、父母身分及
家屬關係之所有事項中，消除對身心障礙者之歧視，以確保：

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(a)所有適婚年齡之身心障礙者，基於當事人雙方自由與充分之同意，其結婚與組成家庭之
權利，獲得承認；
(b)身心障礙者得自由且負責任地決定子女人數及生育間隔，近用適齡資訊、生育及家庭計
畫教育之權利獲得承認，並提供必要措施使身心障礙者得以行使該等權利；
(c) 在與其他人平等基礎上，身心障礙者，包括身心障礙兒童，保留其生育能力。
2. 存在於本國立法中有關監護、監管、託管及收養兒童或類似制度等概念，締約國應確保身
心障礙者於該等方面之權利及責任；於任何情況下均應以兒童最佳利益為最優先。締約國
應適當協助身心障礙者履行其養育子女之責任。
3. 締約國應確保身心障礙兒童於家庭生活方面享有平等權利。為實現該等權利，並防止隱
藏、遺棄、疏忽與隔離身心障礙兒童，締約國應承諾及早提供身心障礙兒童及其家屬全面
之資訊、服務及協助。
4. 締約國應確保不違背兒童父母意願使子女與父母分離，除非主管當局依照適用之法律與程
序，經司法審查判定基於兒童本人之最佳利益，此種分離確有其必要。於任何情況下均不
得以子女身心障礙或父母一方或雙方身心障礙為由，使子女與父母分離。
5. 締約國應於直系親屬不能照顧身心障礙兒童之情況下，盡一切努力於家族範圍內提供替代
性照顧，並於無法提供該等照顧時，於社區內提供家庭式照顧。
第 24 條教育
1. 締約國確認身心障礙者享有受教育之權利。為了於不受歧視及機會均等之基礎上實現此一
權利，締約國應確保於各級教育實行融合教育制度及終身學習，朝向：
(a)充分開發人之潛力、尊嚴與自我價值，並加強對人權、基本自由及人之多元性之尊重；
(b)極致發展身心障礙者之人格、才華與創造力以及心智能力及體能；
(c)使所有身心障礙者能有效參與自由社會。
2. 為實現此一權利，締約國應確保：
(a)身心障礙者不因身心障礙而被排拒於普通教育系統之外，身心障礙兒童不因身心障礙而
被排拒於免費與義務小學教育或中等教育之外；
(b)身心障礙者可以於自己生活之社區內，在與其他人平等基礎上，獲得融合、優質及免費
之小學教育及中等教育；
(c)提供合理之對待以滿足個人需求；
(d)身心障礙者於普通教育系統中獲得必要之協助，以利其獲得有效之教育；
(e)符合充分融合之目標下，於最有利於學業與社會發展之環境中，提供有效之個別化協助
措施。
3. 締約國應使身心障礙者能夠學習生活與社會發展技能，促進其充分及平等地參與教育及融
合社區。為此目的，締約國應採取適當措施，包括：

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(a)促進學習點字文件、替代文字、輔助與替代性傳播方法、模式及格式、定向與行動技能，
並促進同儕支持及指導；
(b)促進手語之學習及推廣聽覺障礙社群之語言認同；
(c)確保以最適合個人情況之語言與傳播方法、模式及於最有利於學業及社會發展之環境
中，提供教育予視覺、聽覺障礙或視聽覺障礙者，特別是視覺、聽覺障礙或視聽覺障
礙兒童。
4. 為幫助確保實現該等權利，締約國應採取適當措施，聘用合格之手語或點字教學教師，包
括身心障礙教師，並對各級教育之專業人員與工作人員進行培訓。該等培訓應包括障礙意
識及學習使用適當之輔助替代性傳播方法、模式及格式、教育技能及教材，以協助身心障
礙者。
5. 締約國應確保身心障礙者能夠於不受歧視及與其他人平等基礎上，獲得一般高等教育、職
業訓練、成人教育及終身學習。為此目的，締約國應確保向身心障礙者提供合理之對待。
第 25 條健康
締約國確認，身心障礙者有權享有可達到之最高健康標準，不因身心障礙而受到歧視。
締約國應採取所有適當措施，確保身心障礙者獲得考慮到性別敏感度之健康服務，包括與健
康有關之復健服務。締約國尤其應：
(a)提供身心障礙者與其他人享有同等範圍、質量與標準之免費或可負擔之健康照護與方
案，包括於性與生育健康及全民公共衛生方案領域；
(b)提供身心障礙者因其身心障礙而特別需要之健康服務，包括提供適當之早期診斷與介
入，及提供設計用來極小化與預防進一步障礙發生之服務，包括提供兒童及老年人該
等服務；
(c)儘可能於身心障礙者最近所在之社區，包括鄉村地區，提供該等健康服務；
(d)要求醫事人員，包括於徵得身心障礙者自由意識並知情同意之基礎上，提供身心障礙者
與其他人相同品質之照護，其中包括藉由提供培訓與頒布公共及私營健康照護之倫理
標準，提高對身心障礙者人權、尊嚴、自主及需求之意識；
(e)於提供健康保險與國家法律許可之人壽保險方面，禁止歧視身心障礙者，該等保險應以
公平合理之方式提供；
(f)防止以身心障礙為由而歧視性地拒絕提供健康照護或健康服務，或拒絕提供食物與液體。
第 26 條適應訓練與復健
1. 締約國應採取有效與適當措施，包括經由同儕支持，使身心障礙者能夠達到及保持最大程
度之自立，充分發揮及維持體能、智能、社會及職業能力，充分融合及參與生活所有方面。
為此目的，締約國應組織、加強與擴展完整之適應訓練、復健服務及方案，尤其是於健康、
就業、教育及社會服務等領域，該等服務與方案應：
(a)及早開始依據個人需求與優勢能力進行跨專業之評估；

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(b)協助身心障礙者依其意願於社區及社會各層面之參與及融合，並儘可能於身心障礙者最
近社區，包括鄉村地區。
2. 締約國應為從事適應訓練與復健服務之專業人員及工作人員，推廣基礎及繼續培訓之發
展。
3. 於適應訓練與復健方面，締約國應推廣為身心障礙者設計之輔具與技術之可及性、知識及
運用。
第 27 條工作與就業
1. 締約國承認身心障礙者享有與其他人平等之工作權利；此包括於一個開放、融合與無障礙
之勞動市場及工作環境中，身心障礙者有自由選擇與接受謀生工作機會之權利。締約國應
採取適當步驟，防護及促進工作權之實現，包括於就業期間發生障礙事實者，其中包括，
透過法律：
(a)禁止基於身心障礙者就各種就業形式有關之所有事項上之歧視，包括於招募、僱用與就
業條件、持續就業、職涯提升及安全與衛生之工作條件方面；
(b)保障身心障礙者在與其他人平等基礎上享有公平與良好之工作條件，包括機會均等及同
工同酬之權利，享有安全及衛生之工作環境，包括免於騷擾之保障，並享有遭受侵害
之救濟；
(c)確保身心障礙者能夠在與其他人平等基礎上行使勞動權及工會權；
(d)使身心障礙者能夠有效參加一般技術與職業指導方案，獲得就業服務及職業與繼續訓練；
(e)促進身心障礙者於勞動市場上之就業機會與職涯提升，協助身心障礙者尋找、獲得、保
持及重返就業；
(f)促進自營作業、創業經營、開展合作社與個人創業之機會；
(g)於公部門僱用身心障礙者；
(h)以適當政策與措施，促進私部門僱用身心障礙者，得包括平權行動方案、提供誘因及其
他措施；
(i)確保於工作場所為身心障礙者提供合理之空間安排；
(j)促進身心障礙者於開放之勞動市場上獲得工作經驗；
(k)促進身心障礙者之職業與專業重建，保留工作和重返工作方案。
2. 締約國應確保身心障礙者不處於奴隸或奴役狀態，並在與其他人平等基礎上受到保障，不
被強迫或強制勞動。
第 28 條適足之生活水準與社會保障
1. 締約國承認身心障礙者就其自身及其家屬獲得適足生活水準之權利，包括適足之食物、衣
物、住宅，及持續改善生活條件；並應採取適當步驟，防護與促進身心障礙者於不受歧視
之基礎上實現該等權利。

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2. 締約國承認身心障礙者享有社會保障之權利，及於身心障礙者不受歧視之基礎上享有該等
權利；並應採取適當步驟，防護及促進該等權利之實現，包括採取下列措施：
(a)確保身心障礙者平等地獲得潔淨供水服務，並確保其獲得適當與可負擔之服務、用具及
其他協助，以滿足與身心障礙有關之需求；
(b)確保身心障礙者，尤其是身心障礙婦女、女孩與年長者，利用社會保障方案及降低貧窮
方案；
(c)確保生活貧困之身心障礙者及其家屬，在與身心障礙有關之費用支出，包括適足之培訓、
諮詢、財務協助及喘息服務方面，可以獲得國家援助；
(d)確保身心障礙者參加公共住宅方案；
(e)確保身心障礙者平等參加退休福利與方案。
第 29 條參與政治與公共生活
締約國應保障身心障礙者享有政治權利，及有機會在與其他人平等基礎上享有該等權
利，並應承諾：
(a)確保身心障礙者能夠在與其他人平等基礎上，直接或透過自由選擇之代表，有效與充分
地參與政治及公共生活，包括確保身心障礙者享有選舉與被選舉之權利及機會，其中
包括，採取下列措施：
(i)確保投票程序、設施與材料適當、無障礙及易懂易用；
(ii)保障身心障礙者之投票權利，使其得以於各種選舉或公投中不受威嚇地採用無記名方
式投票及參選，於各級政府有效地擔任公職與執行所有公共職務，並於適當情況下
促進輔助與新技術之使用；
(iii)保障身心障礙者作為選民，得以自由表達意願，及為此目的，於必要情形，根據其要
求，允許由其選擇之人協助投票；
(b)積極促進環境，使身心障礙者得於不受歧視及與其他人平等基礎上有效與充分地參與公
共事務之處理，並鼓勵其參與公共事務，包括：
(i)參與關於本國公共與政治生活之非政府組織及團體，及參加政黨之活動與行政事務；
(ii)成立及加入身心障礙者組織，於國際性、全國性、區域性及地方性各層級代表身心障
礙者。
第 30 條參與文化生活、康樂、休閒與體育活動
1. 締約國承認身心障礙者有權在與其他人平等基礎上參與文化生活，並應採取所有適當措
施，確保身心障礙者：
(a)享有以無障礙格式提供之文化素材；
(b)享有以無障礙格式提供之電視節目、影片、戲劇及其他文化活動；
(c)享有進入文化表演或文化服務場所，例如劇院、博物館、電影院、圖書館、旅遊服務場
所，並儘可能地享有進入於本國文化中具有重要意義之紀念建築與遺址。

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2. 締約國應採取適當措施，使身心障礙者能有機會發展與利用其創意、藝術及知識方面之潛
能，不僅基於自身之利益，更為充實社會。
3. 締約國應採取所有適當步驟，根據國際法，確保保障智慧財產權之法律不構成不合理或歧
視性障礙，阻礙身心障礙者獲得文化素材。
4. 身心障礙者應有權利，在與其他人平等基礎上，被承認及支持其特有之文化與語言認同，
包括手語及聾人文化。
5. 著眼於使身心障礙者能夠在與其他人平等基礎上參加康樂、休閒與體育活動，締約國應採
取下列適當措施：
(a)鼓勵與推廣身心障礙者儘可能充分地參加各種等級之主流體育活動；
(b)確保身心障礙者有機會組織、發展及參與身心障礙者特殊之體育、康樂活動，並為此目
的，在與其他人平等基礎上，鼓勵提供適當之指導、培訓及資源；
(c)確保身心障礙者得以使用體育、康樂與旅遊場所；
(d)確保身心障礙兒童與其他兒童平等地參加遊戲、康樂與休閒及體育活動，包括於學校體
系內之該等活動；
(e)確保身心障礙者於康樂、旅遊、休閒與體育等活動籌組時，獲得參與所需之服務。
第 31 條統計與資料收集
1. 締約國承諾收集適當之資訊，包括統計與研究資料，以利形成與推動實踐本公約之政策。
收集與保存該等資訊之過程應：
(a)遵行法定防護措施，包括資料保護之立法，確保隱密性與尊重身心障礙者之隱私；
(b)遵行保護人權與基本自由之國際公認規範及收集與使用統計資料之倫理原則。
2. 依本條所收集之資訊應適當予以分類，用於協助評估本公約所定締約國義務之履行情況，
並查明與指出身心障礙者於行使其權利時面臨之障礙。
3. 締約國應負有散播該等統計資料之責任，確保身心障礙者與其他人得以使用該等統計資
料。
第 32 條國際合作
1. 締約國體認到國際合作及其推廣對支援國家為實現本公約宗旨與目的所作出努力之重要
性，並將於此方面，於雙邊及多邊國家間採取適當及有效措施，及於適當情況下，與相關
國際、區域組織及公民社會，特別是與身心障礙者組織結成夥伴關係。其中得包括如下：
(a)確保包含並便利身心障礙者參與國際合作，包括國際發展方案；
(b)促進與支援能力建構，包括透過交流與分享資訊、經驗、培訓方案及最佳範例等；
(c)促進研究方面之合作，及科學與技術知識之近用；
(d)適當提供技術與經濟援助，包括促進無障礙技術及輔助技術之近用與分享，以及透過技
術轉讓等。
2. 本條之規定不妨害各締約國履行其於本公約所承擔之義務。

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第 33 條國家實施與監測
1. 締約國應依其組織體制，就有關實施本公約之事項，於政府內指定一個或多個協調中心，
並應適當考慮於政府內設立或指定一協調機制，以促進不同部門及不同層級間之有關行
動。
2. 締約國應依其法律及行政體制，適當地於國內維持、加強、指定或設立一架構，包括一個
或多個獨立機制，以促進、保障與監測本公約之實施。於指定或建立此一機制時，締約國
應考慮到保障與促進人權之國家機構之地位及功能的相關原則。
3. 公民社會，特別是身心障礙者及其代表組織，應涉入並充分參與監測程序。
第 34 條身心障礙者權利委員會
1. （聯合國）應設立一個身心障礙者權利委員會(以下稱委員會)，履行以下規定之職能。
2. 於本公約生效時，委員會應由十二名專家組成。於另有六十個國家批准或加入公約後，委
員會應增加六名成員，以達到十八名成員之最高限額。
3. 委員會成員應以個人身分任職，品德高尚，於本公約所涉領域具有公認之能力與經驗。締
約國於提名候選人時，請適當考慮本公約第 4 條第 3 項之規定。
4. 委員會成員由締約國選舉，選舉須顧及地域分配之公平，不同文化形式及主要法律體系之
代表性，成員性別之均衡性及身心障礙者專家參與。
5. 委員會成員應於聯合國秘書長召集之締約國會議上，依締約國提名之各國候選人名單，以
無記名投票之方式選出。該等會議以三分之二之締約國構成法定人數，得票最多並獲得出
席參加表決之締約國代表之絕對多數票者，當選為委員會成員。
6. 首次選舉至遲應於本公約生效之日後六個月內舉行。聯合國秘書長至遲應於每次選舉日前
四個月，函請締約國於兩個月內遞交提名人選。秘書長隨後應按英文字母次序編列全體被
提名人名單，註明提名締約國，分送本公約締約國。
7. 當選之委員會成員任期四年，有資格連選連任一次。但於第一次選舉當選之成員中，六名
成員之任期應於二年後屆滿；本條第 5 項所述會議之主席應於第一次選舉後，立即抽籤決
定此六名成員。
8. 委員會另外六名成員之選舉應依照本條之相關規定，於定期選舉時舉行。
9. 如委員會成員死亡或辭職或因任何其他理由而宣稱無法繼續履行其職責，提名該成員之締
約國應指定一名具備本條相關規定所列資格並符合有關要求之專家，完成所餘任期。
10. 委員會應自行制定議事規則。
11. 聯合國秘書長應為委員會有效履行本公約規定之職能，提供必要之工作人員與設備，並
應召開委員會之首次會議。
12. 顧及委員會責任重大，經聯合國大會核准，本公約設立之委員會成員，應按大會所定條
件，從聯合國資源領取薪酬。

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13. 委員會成員根據聯合國特權與豁免公約相關章節規定，應有權享有聯合國特派專家享有
之設施、特權及豁免。
第 35 條締約國提交之報告
1. 各締約國於本公約對其生效後二年內，應透過聯合國秘書長，向委員會提交一份完整報
告，說明為履行本公約規定之義務所採取之措施與於該方面取得之進展。
2. 其後，締約國至少應每四年提交一次報告，並於委員會提出要求時另外提交報告。
3. 委員會應決定適用於報告內容之準則。
4. 已經向委員會提交完整初次報告之締約國，於其後提交之報告中，不必重複以前提交之資
料。締約國於編寫給委員會之報告時，務請採用公開、透明程序，並適度考慮本公約第 4
條第 3 項規定。
5. 報告可指出影響本公約所定義務履行程度之因素與困難。
第 36 條報告之審議
1. 委員會應審議每一份報告，並於委員會認為適當時，對報告提出意見與一般性建議，將其
送交有關締約國。締約國可以自行決定對委員會提供任何資料作為回復。委員會得要求締
約國提供與實施本公約相關之進一步資料。
2. 對於明顯逾期未交報告之締約國，委員會得通知有關締約國，如於發出通知後三個月內仍
未提交報告，委員會必須根據所獲得之可靠資料，審查該締約國實施本公約之情況。委員
會應邀請有關締約國參加此項審查工作。如締約國提交相關報告作為回復，則適用本條第
1 項之規定。
3. 聯合國秘書長應對所有締約國提供上述報告。
4. 締約國應對國內公眾廣泛提供本國報告，並便利獲得有關該等報告之意見與一般性建議。
5. 委員會應於其認為適當時，將締約國報告轉交聯合國專門機構、基金與方案及其他主管機
構，以便處理報告中就技術諮詢或協助提出之請求或表示之需要，同時附上委員會可能對
該等請求或需要提出之意見與建議。
第 37 條締約國與委員會之合作
1. 各締約國應與委員會合作，協助委員會成員履行其任務。
2. 於與締約國之關係方面，委員會應適度考慮提高各國實施本公約能力之途徑與手段，包括
透過國際合作。
第 38 條委員會與其他機構之關係
為促進本公約之有效實施及鼓勵於本公約所涉領域開展國際合作：
(a)各專門機構與其他聯合國機關應有權出席審議本公約中屬於其職權範圍規定之實施情
況。委員會得於其認為適當時，邀請專門機構與其他主管機構就公約於各自職權範圍
所涉領域之實施情況提供專家諮詢意見。委員會得邀請專門機構與其他聯合國機關提
交報告，說明公約於其活動範圍所涉領域之實施情況。

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(b)委員會於履行其任務時，應適當諮詢各國際人權條約所設立之其他相關組織意見，以便
確保各自之報告準則、意見與一般性建議之一致性，避免於履行職能時出現重複及重
疊。
第 39 條委員會報告
委員會應每二年向大會與經濟及社會理事會提出關於其活動之報告，並得於審查締約國
提交之報告與資料之基礎上，提出意見及一性般建議。該等意見及一般性建議應連同締約國
可能作出之任何評論，一併列入委員會報告。
第 40 條締約國會議
1. 締約國應定期舉行締約國會議，以審議與實施本公約有關之任何事項。
2. 聯合國秘書長最遲應於本公約生效後六個月內召開締約國會議。其後，聯合國秘書長應每
二年，或根據締約國會議之決定，召開會議。
第 41 條保存人
聯合國秘書長為本公約之保存人。
第 42 條簽署
本公約自二○○七年三月三十日起於紐約聯合國總部開放給所有國家與區域整合組織簽
署。
第 43 條同意接受約束
本公約應經簽署國批准與經簽署區域整合組織正式確認，並應開放給任何尚未簽署公約
之國家或區域整合組織加入。
第 44 條區域整合組織
1. “區域整合組織＂是指由某一區域之主權國家組成之組織，其成員國已將本公約所涉事項
方面之權限移交該組織。該等組織應於其正式確認書或加入書中聲明其有關本公約所涉事
項之權限範圍。此後，該等組織應將其權限範圍之任何重大變更通知保存人。
2. 本公約提及“締約國＂之處，於上述組織之權限範圍內，應適用於該等組織。
3. 為第 45 條第 1 項與第 47 條第 2 項及第 3 項之目的，區域整合組織交存之任何文書不應計
算在內。
4. 區域整合組織可以於締約國會議上，對其權限範圍內之事項行使表決權，其票數相當於已
成為本公約締約國之組織成員國數目。如區域整合組織之任何成員國行使表決權，則該組
織不得行使表決權，反之亦然。
第 45 條生效
1. 本公約應於第二十份批准書或加入書存放後之第三十日起生效。
2. 對於第二十份批准書或加入書存放後批准、正式確認或加入之國家或區域整合組織，本公
約應自其文書存放後之第三十日起生效。
第 46 條保留

407

1. 保留不得與本公約之目的與宗旨不符。
2. 保留可隨時撤回。
第 47 條修正
1. 任何締約國均得對本公約提出修正案，提交聯合國秘書長。秘書長應將任何提議之修正案
傳達締約國，要求締約國通知是否贊成召開締約國會議，以審議提案並就提案作出決定。
於上述傳達發出日後四個月內，如有至少三分之一之締約國贊成召開締約國會議時，秘書
長應於聯合國主辦下召開會議。經出席並參加表決之締約國三分之二多數通過之任何修正
案應由秘書長提交大會核可，隨後提交所有締約國接受。
2. 依據本條第 1 項之規定通過與核可之修正案，應於存放之接受書數目達到修正案通過之日
締約國數目之三分之二後之第三十日起生效。此後，修正案應於任何締約國交存其接受書
後之第三十日起對該締約國生效。修正案只對接受該項修正案之締約國具有約束力。
3. 經締約國會議一致決定，依據本條第 1 項之規定通過與核可但僅涉及第 34 條、第 38 條、
第 39 條及第 40 條之修正案，應於存放之接受書數目達到修正案通過之日締約國數目之三
分之二後之第三十日起對所有締約國生效。
第 48 條退約
締約國得以書面通知聯合國秘書長退出本公約。退約應於秘書長收到通知之日起一年後
生效。
第 49 條無障礙格式
本公約之文本應以無障礙格式提供。
第 50 條正本
本公約之阿拉伯文、中文、英文、法文、俄文與西班牙文文本，同一作準。

下列簽署人經各自政府正式授權於本公約簽字，以昭信守。

408

附錄八、台灣社區居住與獨立生活聯盟團體會員名冊
財團法人心路社會福利基金會
光仁社會福利基金會所屬台北市萬大團體家庭
財團法人第一社會福利基金會
財團法人台北市私立陽明養護中心
財團法人蘭智社會福利基金會
財團法人台灣省私立啟智技藝訓練中心
財團法人桃園縣私立真善美啟能發展中心
財團法人新竹市天主教仁愛社會福利基金會
財團法人私立天主教華光智能發展中心
財團法人苗栗縣私立新苗發展中心
財團法人瑪利亞社會福利基金會
財團法人苗栗縣私立幼安教養院
財團法人瑪利亞社會福利基金會附設瑪利亞啟智學園
台中市愛心家園
財團法人瑪利亞社會福利基金會附設瑪利亞霧峰教養家園
財團法人彰化縣私立慈生仁愛院
內政部雲林教養院
財團法人天主教會嘉義教區附設嘉義縣私立聖心教養院
財團法人台南市私立天主教瑞復益智中心
財團法人天主教台南市私立德蘭啟智中心
財團法人台灣省私立心德慈化教養院
財團法人天主教台南市私立蘆葦啟智中心
澎湖縣私立財團法人天主教澎湖教區附設惠民啟智中心
財團法人屏東縣私立屏東啟智教養院
財團法人台東縣私立牧心智能發展中心
財團法人天主教會台中教區附設立達啟能訓練中心
財團法人屏東縣私立基督教伯大尼之家
財團法人天主教會嘉義教區附設雲林縣私立華聖智能發展中心
財團法人新竹縣天主教世光教養院
財團法人伊甸社會福利基金會
財團法人桃園縣私立觀音愛心家園

409

財團法人台灣省天主教會新竹教區附設桃園縣私立愛家發展中心
財團法人台灣省天主教會新竹教區附設苗栗縣私立聖家啟智中心
財團法人桃園縣私立
心燈啟智教養院
財團法人台灣省私立香園紀念教養院
財團法人彰化縣私立基督教喜樂保育院
財團法人台南市私立天主教美善社會福利基金會
財團法人天主教會嘉義教區附設嘉義縣私立敏道家園
財團法人台灣基督教門諾會附設花蓮縣私立黎明教養院
財團法人天主教會台中教區附設南投縣私立復活啟智中心
財團法人中華民國自閉症基金會
財團法人臺灣省天主教會新竹教區附設桃園縣私立天使發展中心
財團法人向上社會福利基金會
財團法人台中市私立信望愛智能發展中心
社團法人台東縣智障者家長協會

【講義】從CRPD檢視台灣身心障礙者居住權與生活品質 國際研討會

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