3月社區居住研討會講義(中英文)

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2011年3月21-22日社區居住研討會,邀請Arduin執行長Jos van Loon主講

2011年3月21-22日社區居住研討會,邀請Arduin執行長Jos van Loon主講

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  • On a large scale people with intellectual disabilities are going through a process of emancipation and growing awareness. Fundamental moves are being made in the development from a position of dependence of many years’ standing towards one of self-determination. In the last decade, this development is also going on in the Netherlands.
  • On a large scale people with intellectual disabilities are going through a process of emancipation and growing awareness. Fundamental moves are being made in the development from a position of dependence of many years’ standing towards one of self-determination. In the last decade, this development is also going on in the Netherlands.
  • In Arduin a former institute, a day nursery and a day centre for adults, have merged. At present Arduin, an independent organization since 1 January 1996, has about 600 clients. In 1994, when the organization formerly known as Vijvervreugd came under new management, there was insufficient quality of care in several respects. An independent study, carried out by Prof. G. Van Hove from the department of special education at the University of Gent (Belgium), reached the conclusion that 35% of the inhabitants of the former Vijvervreugd had fallen through the care net. Arduin became an independent organization and a course of action with the title ‘Het gaat nu echt gebeuren’ (‘It really is going to happen now’) was drawn up.
  • In Arduin a former institute, a day nursery and a day centre for adults, have merged. At present Arduin, an independent organization since 1 January 1996, has about 600 clients. In 1994, when the organization formerly known as Vijvervreugd came under new management, there was insufficient quality of care in several respects. An independent study, carried out by Prof. G. Van Hove from the department of special education at the University of Gent (Belgium), reached the conclusion that 35% of the inhabitants of the former Vijvervreugd had fallen through the care net. Arduin became an independent organization and a course of action with the title ‘Het gaat nu echt gebeuren’ (‘It really is going to happen now’) was drawn up.
  • The backgrounds for this development are found in he changing views on the nature of mental disability (the definition by the American Association on Mental Retardation, AAMR (1992); disability studies), criticism of institutional care throughout the years (Rosenberg,1994; John O’Brien and Connie Lyle O’Brien,1993; Van Gennep, 1976; Van Hove, G.,1996; Erving Goffman, 1962; Vreeke, Janssen, Resnick and Stolk,1998), the Universal Declaration of Rights etc. With respect to the actual provision of support, it is important that the implications of the emancipation cornerstone are carried through consistently in all of the resolutions made. This was accentuated in the choice to dismantle the institution, as well as in choosing a coaching style of management directed towards autonomy and self-direction. It is however crucial that a good alternative is introduced in the shape of a service directed towards the support of people with intellectual disabilities.
  • The backgrounds for this development are found in he changing views on the nature of mental disability (the definition by the American Association on Mental Retardation, AAMR (1992); disability studies), criticism of institutional care throughout the years (Rosenberg,1994; John O’Brien and Connie Lyle O’Brien,1993; Van Gennep, 1976; Van Hove, G.,1996; Erving Goffman, 1962; Vreeke, Janssen, Resnick and Stolk,1998), the Universal Declaration of Rights etc. With respect to the actual provision of support, it is important that the implications of the emancipation cornerstone are carried through consistently in all of the resolutions made. This was accentuated in the choice to dismantle the institution, as well as in choosing a coaching style of management directed towards autonomy and self-direction. It is however crucial that a good alternative is introduced in the shape of a service directed towards the support of people with intellectual disabilities.

Transcript

  • 1. Dr. Jos van Loon, Arduin January 2011 The Deïnstitutionalisation and Current Practice of Arduin. Quality of life and Deïnstitutionalisation
  • 2. Dr. Jos van Loon, Arduin January 2011 Arduin 的去機構化與現況 生活品質與 去機構化
  • 3. Summary: Key Factors in the organizational change of Arduin
    • A clear vision with a focus on QOL
    • Simple communication that provides guidance, knowledge, and understanding
    • Constructive engagement
    • Organizational changes / generate short term gains
    • Anchoring the new approach in the organization’s culture
  • 4. 摘要 : Arduin 組織變革的關鍵因素
    • 清楚聚焦在生活品質的願景
    • 簡單明晰的溝通模式以作為指引、知識與理解
    • 有建設性的從事
    • 組織變革 / 產生短期的收穫
    • 將新方式定注於組織文化中
  • 5. Arduin was in 1994:
    • An institute for 360 residents with insufficient quality of care in several respects
    • Course of action from then on: 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’
  • 6. 1994 年的 Ardiun :
    • 有 360 位住民的教養院 , 許多方面的照顧品質並不足
    • 從那時起採取的行動 : 正向的採取解放與自我決策做基礎 , 以確保最大可能的生活品質
    • 從 “ 提供完全的照顧服務 ” 轉移到 ” 提供顧客想望的支持 ”
  • 7. Arduin now:
    • Adult Day care : 71 clients
    • Day care for children: 20, but all places are in inclusive education
    • 24-hours support : 500
    • 1200 workers
    • over 135 houses in 25 villages and cities
    • work / day care for everyone
    • Academy for Quality of Life; over 150 courses for all clients and workers
  • 8. 現在的 Ardu in :
    • 成人日間照顧 : 有 71 位
    • 兒童日間照顧 : 有 20 位 , 但所有的都是接受融合教育
    • 24- 小時支持 : 500
    • 1 2 00 位 工作人員
    • 在 25 個地區有超過 135 個家
    • 為每個人提供工作 / 日間照顧
    • 生活品質學院 (Academy for Quality of Life); 為所有顧客與工作人員開設超過 1 50 種課程
  • 9.
    • 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.
    The deïnstitutionalisation process :
  • 10.
    • Arduin 從教養院轉變成 一個新的 以社區為本位的組織
    • 行動計畫 的基礎 是 聚焦 在生活品質與支持典範
    • 以 支持每一 個 人為優先 , 由他或她決定自己的需要
    • 具創 意 的解決方案 : 如日間托育的兒童到 鄰里 的一般學校就讀 , 由 Arduin 的工作者提供支持 .
    去機構化的過程:
  • 11. The backgrounds for this development
    • Changing views on the nature of intellectual disability
    • definition by the American Association on Mental Retardation, now AAIDD (Manual of 1992, later 2002, now 2010)
    • Criticism of institutional care throughout the years
    • Universal Declaration of Human Rights
    • Quality of Life literature
  • 12. 發展背景
    • 對智能障礙 者 觀點的改變
      • 美國智能與發展障礙協會對智能障礙的新定義 (AAIDD 1992 年版 , 之後的 2002 版 , 最新 2010 版 )
    • 這些年來對教養式照顧的批判
    • 世界人權宣言
    • 生活品質文獻
  • 13. Criticism of institutional care
    • Already in 1962 Erving Goffman described the ‘total institution’
    • In 1976 Ad van Gennep, a Dutch professor in Special Education, described the institution as a threat to the personality of the inhabitants
    • In 1984 a Californian advocacy group for people with learning disabilities, devised the term ‘The Retarding Environment’
    • In 1996 in his ‘Pamphlet against the dehumanization of people with learning disabilities’ Geert Van Hove describes the process of dehumanization.
    • Parents: e.g. the article: “There is a hell”
  • 14. 對教養式照顧的批判
    • 1962 年 Erving Goffman 描述了 “ 完全的教養院 (total institution) ”
    • 1976 年 Ad van Gennep, 荷蘭特殊教育教授 , 形容 教養院是對住民人格的威脅
    • 1984 年 加州的一個學習障礙自我倡議組織 , 喊出了 “ 障礙的環境 (The Retarding Environment) ”
    • 1996 年 Geert Van Hove 在 ” 反對對學習障礙者 非人性化 的評論小冊 ”中陳 述 非人性化 的過程 .
    • 父母 : 例如”人間煉獄” ( There is a hell ) 的文章報導
  • 15. 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.
  • 16. 生活品質 (Schalock, 2007):
      • 是多 層 面向的概念
      • 受個人與環境因素 , 以及兩者之間互動的影響
      • 可從客觀與主觀指標來評量
      • 障礙者的生活品質要素與關聯性對 所有的 人而言是同樣重要的
      • 生活品質可藉由讓個人參與所關注的決定而提升
      • 接納並完全的統合於所屬的社區則 可提升 生活品質
  • 17. Dimensions of Quality of Life (Schalock & Verdugo, 2002):
    • Emotional well-being
    • Interpersonal relations
    • Material well-being
    • Personal development
    • Physical well-being
    • Self-determination
    • Social inclusion
    • Rights
  • 18. 生活品質面向 (Schalock & Verdugo, 2002):
    • 情緒福祉
    • 人際關係
    • 物質福祉
    • 個人發展
    • 生理 福祉
    • 自我決策
    • 社會融合
    • 權利
  • 19. 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
  • 20. 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 教育狀態 , 個人技能 , 適應行為 (ADLs IADLs) 選擇 / 決定 , 自治 , 個人掌控 , 個人目標 社會參與 人際關係 社會融合 權利 社交網絡 , 友誼 , 社交活動 , 互動 , 關係 社區 統合 / 參與 , 社區角色 , 支持 人道 ( 尊重 , 尊嚴 , 平等 ) 法律 ( 法律支持 , 正當程序 ) 福祉 情緒福祉 生理 福祉 物質福祉 安全 & 保障 , 正向經驗 , 滿足 , 自我概念 , 免於壓力 健康狀態 營養狀態 娛樂 / 體力消耗 經濟狀態 , 就業情況 , 居住狀態 , 擁有物
  • 21. The dimensions in quality of life that were seen as most essential in the innovation
    • inclusion,
    • self-determination
    • personal development
    • Therefore : It is important that the implications of the emancipation cornerstone were carried through consistently in all of the resolutions made:
      • dismantle the institute
      • coaching style of management directed towards autonomy and self-direction
      • the opinions of the clients play an important role in structuring the new organization
  • 22. 生活品質面向 被視為革新 的 根基
    • 融合 ,
    • 自我決策
    • 個人發展
    • 因此 : 解放基礎須在解決下列所有面向時是一致的 :
      • 廢除教養院
      • 管理的風格直接導向自治與自我引導
      • 建構新組織 時, 服務對象的 意見有著 重要 的 角色
  • 23. Consequences of this emphasis on QOL
    • On macro – meso – and micro level
    • The process of change from a focus on quality of care towards quality of life inevitable lead to the choice of deinstitutionalization
    • However: much attention was then needed to develop an adequate support model or support system for people with intellectual disabilities
  • 24. 強調生活品質的結果
    • 在鉅視 – 居間 – 以及微視層級
    • 從著重照顧品質改變到聚焦在生活品質的過程 , 無 可 避免的走向選擇 去機構化
    • 無 論如何 : 更多的重點會放到為智能障礙者 發展適合的支持模式 或支持系統
  • 25. Important conditions, which are necessary for a successful process of supported living services
    • Focussing on quality of life and introducing a support-paradigm.
    • Quality of care on its own, is absolutely not a guarantee for quality of life.
    • Radical change of perspective and discourse is necessary and should be well managed, making use of person-centred planning, supports paradigm and empowerment for both staff and clients.
    • Therefore outcome-based evaluation is crucial , requiring strong leadership, nerve and flexibility to change.
  • 26. 成功的支持性居住服務 過程中 的 要件
    • 聚焦在生活品質並介紹支持典範 .
    • 單就照顧品質是無法保障生活品質 .
    • 在 觀點與論述上 必須有 根本的改變 , 且需 有 好的管理 , 使用以個人為中心的計畫、支持典範並 賦 權 予 工作人員 與顧客 .
    • 因此 以成果為基礎的評估極為重要 , 需要強而有力的領導、勇氣與具彈性的面對改變 .
  • 27. The supportmodel is very simple :
    • Let people live where they want to live and work where they want to work, and give them subsequently the support they need
    • Someone who needs a lot of support, gets a lot of support. Someone who needs little support, gets little support:
      • Needs a person 24 hour per day support, then that is what he gets
      • Needs a person 1 hour per week support, then that is what he gets
  • 28. 支持模式其實非常簡單 :
    • 讓人們住他想住的地方 , 做想做的工作 , 並給 予 後續所需的支持
    • 有些人 需要 很 多支持的 , 就 得到大量的支持 ; 支持 需求 不多的人 , 就提供少量的支持 :
      • 需要一天 24 小時支持的人 , 那就是 他 得到的 支持
      • 需要一星期少於一個小時的人 , 就給他一小時的支持
  • 29. Supports Paradigm in Arduin:
      • Supports where and how the individual client wants these supports
      • Supported by the personal assistant
      • Supports are offered flexibly and individually: the group thinking is abandoned
      • A transition in the organisation from providing care to offering support
  • 30. Arduin 的支持典範 :
      • 支持個別所想要的支持點與形式
      • 由個人助理提供支持
      • 支持是具有彈性並個別化 : 捨棄團體的思考
      • 組織從提供照顧轉移至提供支持
  • 31. With respect to the actual provision of support, it is important that the implications of the emancipation cornerstone are carried through consistently in all of the decisions made in the management of Arduin. This was accentuated in the choice to dismantle the institution, as well as in choosing a coaching style of management directed towards autonomy and self-direction. Only a facilitating organization remains, focused on support of the self-determining client, focused on supported living. An important motto in shaping this organization is “Normal if possible, special if necessary”. The Model ‘Arduin ’
  • 32. 在實際提供所有做決定的支持時 , 要注意解放基礎所代表的意涵 , 並一致的運用在所有做決定時實際 所提供的 支持 . 這選擇突顯捨棄教養 模式 , 而選擇了導向自治與自我引導的管理模式 . 唯有在促進成長的組織 , 才 會持續聚焦在支持服務對象自我決策與支持性居住 . 塑造組織很重要的座右銘 “ 盡可能的一般化 , 若需要亦可 特殊 化 (Normal if possible, special if necessary)”. ‘ Arduin’ 的模式
  • 33.
    • The separation between the three life spheres - accommodation, work/daily activities and leisure – is fundamentally important in the process of deinstitutionalization and promotion of quality of life.
    • The value of work/day occupation is considered to be of more fundamental importance in one’s life.
    • An important side -effect of work/day occupation is that one only gets the feeling of coming home, being at home, even having a home if one comes home after a days work / daily activities. When one is in the same accommodation for the whole day, there arises no feeling of home.
  • 34.
    • 在去機構化和提升生活品質的過程中 - 將居住、工作 / 日間活動與休閒 這三個 生活區域分開是重要 的 基 礎 .
    • 對一個人的生活而言, 工作 / 日間活動 所意涵 的價值 有著更基本的 重要 性 .
    • 工作 / 日間活動很重要的副作用是 - 當日夜分離時 , 才會有真正回家、是在自己家的感覺 . 當一個人是在同一個住宿區一整天 , 是沒有家的感覺 .
  • 35.
    • Consequently, many ‘bureaucratic trimmings’ can be abolished in the organization: there is no ponderous apparatus to keep up. The resources that are becoming available are greatly needed in the primary process of the small scale living arrangements and the work/ day occupation for everyone.
    • The functions of most staff are effected by necessary fundamental changes in this process and they will continue to change. This process was not always easy for the staff members, nor for the parents. It is important that at the start of this process the members of staff are given job and salary security.
  • 36.
    • 所以“官僚模式”應 該 被拋棄 , 不需要繁瑣笨重的模式 . 而是有更多的資源投注在為每個人提供小型的社區居住以及工作 / 日間活動
    • 在這個過程中大多數的工作人員會受到影響 而 有所改變 , 且是持續的改變 . 這 對工作人員及家屬並不容易 . 在開始這過程時 , 要給予工作人員工作與薪資上的保障 .
  • 37. The practice of self- determination Leading principle in supporting clients is: “ 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 in the community, not grouped together! Foster families for children Work or daily activities in companies and daycentres in the middle of 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.
  • 38. 自我決策的作法 支持顧客的重要原則是 : “ ( 在個人助理的支持下 ) 每個人對他 / 她的生活都可以做重要的決定 “ 居住的選擇 : 住宅局 工作的選擇 : 職缺銀行 個人發展的作法 從經驗中學習 : 參與在社區中 生活品質學院 : 著重在解放與自我決策 融合的作法 : 為所有的顧客在社區中提供一般的房舍 , 而非群聚在一起 ! 為兒童提供寄養家庭 工作的公司行號或是日活動中心是在社區的中央 支持的做法 : 人們住在他們想住的地方 , 做想做的工作 , 並獲得所需的支持 .
  • 39. Inclusion: participation in the community!
    • People exist together with other people
    • All people have the right to fully participate in their community: family, neighbourhood, school , work, home, leisure time, religion
    • No ‘us’ and ‘them’
    • An “inclusive society”!
  • 40. 融合 : 參與在社區中 !
    • 跟其他人一同存在
    • 每個人都有權完全的參與在他們所屬的社區中 : 家人、鄰居、學校、工作、家、休閒時間、宗教
    • 沒有 ‘ 我們 ’ 與 ‘ 他們 ’ 的分別
    • 是一個 “ 融合的社會 ” !
  • 41. Self-determination ….
    • All people want to be in control, want to make their own decisions. We should acknowledge this inner need.
    • So one should if necessary support people with intellectual disabilities to develop, to grow, learn them to make their own choices, to stand up for themselves. Also one should create the circumstances in which it is possible to make one’s own choices.
  • 42. 自我決策 … .
    • 所有的人都想要有所掌控 , 想要自己做決定 . 我們應 認同 這項內在需求 .
    • 所以我們應 支持 智能障礙者發展、成長、學習為自己做選擇,及為自己發聲 . 我們也應當創造環境 , 讓智能障礙者是可以為自己做選擇 .
  • 43. … Self-determination
    • Self-determination of people with intellectual disabilities, especially those with an intensive need for support, is often experienced as a concept that is difficult to work with in practice.
    • Many authors emphasize the importance of the relational aspects in the concept of autonomy and the promotion of a good quality of life.
    • Van Gennep (1997) argues that choice and control have to be seen against the background of a social net .
    • Personal autonomy should not be confused with an ideology of independence (Reindal,1999). The notion of ‘control in principle’ implies that the individual is in control of his / her life although others may do the physical or intellectual performance of certain tasks .
  • 44. … 自我決策
    • 特別是對需要密集支持的智能障礙者 , 自我決策通常被認為是一種難以落實執行的概念 .
    • 許多作者強調自治概念與提升良好生活品質 關係面 的重要性 .
    • Van Gennep (1997) 提出爭論指出 , 選擇與掌控被視為是與社會網絡 (social net) 的背景有所衝突 .
    • 個人的自治不應與獨立這意識形態混為一談 (Reindal,1999). ‘ 控制原則 ( control in principle ) ’ 這概念意味著 這個人掌控他 / 她的生活 , 即使可能需要他人在特定的事務上提供肢體上或心智上的執行 .
  • 45. 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
  • 46. 以前是 : 照顧計畫的地圖 專業間的會議 專業做決定 現在是 : 個人計畫 , 以網際網路為基礎 與顧客間的對話 你想要什麼 ? 如何的想 ? 個人計畫 從 “ 照顧計畫 ” 到個人計畫
  • 47. Personal development
    • Empowerment: enabling people to learn to stand up for themselves and take control in their own lives
    • One learns by experience
    • Schooling and education
  • 48. 個人發展
    • 賦權 : 讓人們學習為自己發聲 , 並掌控他們自己的生活 .
    • 由經驗中學習
    • 學校教育和訓練
  • 49. Academy on Quality of Life Many courses for clients ánd for workers within all the domains of Quality of Life
  • 50. 生活品質學院 ( Academy on Quality of Life ) 為顧客與工作人員 依生活品質的所有領域 開設許多課程
  • 51.  
  • 52.  
  • 53.
    • Clients are supported in their homes by supportworkers
    • One of the problems we encountered in deinstitutionalization / the reorganization of Arduin, was that the staff members who were trained to work in an institution are therefore not automatically trained to work in supporting people in community based working and living situations:
    • A new education for this profession was suggested and implemented
    The support worker
  • 54.
    • 顧客是在他們自己的家由支持工作人員提供支持。 在去機構化與 Arduin 組織重整的過程中 ,所 面臨 的一個問題是 工作人員先前所受的訓練是教養式工作 , 不一定就能自動轉換成支持服務對象在社區工作或居住 :
    • 建議 需要 為這類型的專業人員提供 新的 教育 訓練。
    支持工作人員 ( The support worker )
  • 55. The Personal Assistant
    • 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.
    • The personal has a regular contact with the client to speak about his wishes (concerning living, working and leisure), and the ways to give this content and shape. The results of this dialogue can be written down in the Personal Plan of the client. 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. Therefore, it is fundamental that a personal assistant is not a direct caregiver towards his/her client. The personal assistant is, when required, the interpreter/translator of the wishes of the client, but always explicitly from the role of assistant. The intensity and frequency of this support is totally dependent on the request of the client (of course within the financial margins of the organization)!
  • 56. 個人助理
    • 每位顧客都有一位個人助理 , 以提供當他 / 她需要跟組織對話、訂定希望與提出支持需求時的支持 .
    • 個人助理會定期與顧客碰面 , 談論他的希望 ( 有關於居住、工作與休閒 ) , 以及想達成的內容與方式 . 這些對話的結果可以成為這位顧客的個人計畫 . 她或他會維持跟組織內的各個工作人員、顧客、他的家人及 / 或監護人的溝通 .
    • 他 / 她會察看所同意的服務與照顧是否有依照顧客的希望來執行 . 因此 , 個人助理基本上不可是他 / 她顧客的直接照顧者 . 當有需求時 , 個人助理是顧客夢想希望的翻譯人員 , 但永遠有著清楚的角色就是助理 . 這項支持的強度與頻率是完全以顧客的要求為主 ( 當然需在組織經費的幅度內 )!
  • 57. Securing the quality of the medical care in Arduin
    • From one institute-doctor, the ‘family-doctor’ for all 360 residents
    • to 49 local general practitioners with the support of one specialist doctor! (in Dutch: A.v.g.)
    • With good arrangements as to allocation of tasks
    • A.v.g. as specialist: handicap-related problems
  • 58. 確保 Arduin 的醫療照顧品質
    • 從一位機構醫師轉換成為 360 位服務對象提供‘家庭醫師’
    • 49 位地區 的 一般開業醫生配有一位專科醫生 ( 在荷蘭 : A.v.g.)
    • 有好的分配額安排
    • 障礙有關的專科醫生
  • 59. Quality of Care Focus vs. Quality of Life Focus Quality of Care Focus Quality of Life Focus Perspective Provider Person in his natural network Interest Process Outcomes Content Management of care systems Support and its effects on a personal life Typical criteria for  Evaluation Efficiency, cost-effectiveness, planning, consumer satisfaction Long term value-based outcomes on inclusion, personal development and self- determination Structures Actual care systems only need improvement Support needs to serve a persons case, even if this means that alternative structures have to be found
  • 60. 照顧品質 vs. 生活品質 著重在照顧品質 聚焦在生活品質 觀點 提供者 個人在他 的 自然網絡 關注 過程 成果 內容 照顧系統的管理 對個 人 生 活 的支持與其成效 評估標準 效率 , 成本效益 , 計畫 , 顧客滿意度 以價值觀為基礎的長期成果是建立在融合 , 自我發展與自我決策 架構 只需要改善實際的照顧系統 支持是以個人所需的 , 即使可能需要 在 結構上 做 改變
  • 61. Quality of Care vs. Quality of Life
    • Perspective of the Provider
    • The board of placement decided where a person could live and work
    • The staff wrote the care-plan
    • The person came to live in a ward of the organization. Staff cared for the person in their environment.
    • The greater interest in organizational processes was e.g. reflected in the large overhead
    • Perspective of the person
    • Housing bureau and a vacancy bank, where people can apply themselves.
    • A personal plan is written by the personal assistant with the person
    • The person lives in his or her house. The staff comes to support the person in his / her house.
    • There is very little overhead
  • 62. 照顧品質 vs. 生 活品質
    • 提供者的觀點
    • 由安置委員會決定居住與工作點
    • 由工作人員撰寫照顧計畫
    • 住在組織中 , 由工作人員提供照顧 .
    • 更多的關注點是放在組織高層的管理程序
    • 個人觀點
    • 可自行向住宅局與職缺銀行提出申請
    • 個人計畫是由個人助理協助其一起完成
    • 住在自己的家中 . 工作人員到他 / 她家提供支持 .
    • 很少的管理
  • 63.
    • Management of care systems:
    • e.g.:
    • Giving care in an effective way: an institutional way of organising lives of people, grouping people together on the basis of similarities in functioning or disability, treating them all similar.
    • People were seen as patients.
    • The food came from the large institutional kitchen.
    • There was little work or daily activities as the focus was on care.
    • Support & effects on a personal life: e.g.:
    • Support is given on an individual base, according to the needs of the individual person. Much emphasis on a normal life as citizen. Not every person gets supports in the same areas or the same amount. People live in normal houses in the region.
    • People are involved in preparing their meals in their own kitchen as much as possible.
    • Everyone has a fulltime job or daily activities.
    Content
  • 64.
    • 照顧系統的管理 :
    • 以有效率的方式提供照顧 : 將功能或障礙類似的個人分組 , 以機構式的方法來組織他們的生活 , 對待他們的方法都雷同 .
    • 視為病患 .
    • 由中央廚房提供膳食 .
    • 著重在照顧 , 而少有工作或日常活動 .
    • 對個人生活提供支持與其效益 :
    • 支持是根據個人需求 , 是個別化的 . 強調一般公民的生活 . 每個人得到的支持領域或支持量都不相同 . 住在社區 的 一般房子 .
    • 在自己的廚房盡可能的參與個人膳食的準備 .
    • 每人都有全職工作或日間活動 .
    內容
  • 65.
    • In the ward where one lived, one of the nursing staff took special care for a person.
    • All clients had one doctor: the doctor of the institution.
    • As to religion there were sometimes special services for people with intellectual disabilities in the gym of the institution.
    • Everyone has a independent personal assistant.
    • The people have he same local general practitioner as the other people in the neighbourhood.
    • People go to their local church.
    Management of care systems: e.g.: Support & effects on a personal life: e.g.:
  • 66.
    • 住在病房式的機構中 , 由護理人員提供特殊照顧 .
    • 每位服務對象都由機構醫師負責 .
    • 有時 , 在機構的體育館提供智能障礙者信仰方面的特殊服務 .
    • 每個人都有獨立的個人助理 .
    • 如鄰居一樣有社區的開業醫師 .
    • 去當地的教堂 .
    照顧系統的管理 : 對個人生活提供支持與其效益 :
  • 67. Typical criteria for evaluation
    • Efficiency, cost-effectiveness, planning, consumer satisfaction:
    • The focus on the organisational, bureaucratic and administrative processes Are the organisational processes running smoothly.
    • Long term value-based outcomes on inclusion, personal development and self determination:
    • The focus on continuous, ongoing, evaluation of the quality of life of every individual person is part of the method of the personal plan and part of the job of the personal assistant in dialogue with his client.
  • 68. 評估的標準
    • 效率 、 成本效益 、 計畫 、 顧客滿意度 :
    • 著重在組織官僚的行政程序 , 關心運作是否順暢 .
    • 以融合 、 個人發展與自我決策為價值基礎的長期成果 :
    • 著重在持續不斷的針對每為服務對象進行生活品質評估 , 個人助理要與服務對象進行對話 , 了解對生活品質的想法並做為擬定個人計畫的方法之一 .
  • 69. Structures
    • Actual care systems only need improvement: e.g.:
    • The organisation had a strong hierarchical structure, with many managers and middle managers as result.
    • Communication went through these hierarchical lines.
    • Most staff were trained in nursing.
    • Support needs to serve a persons case, even if this means that alternative structures have to be found: e.g.:
    • A new organisational structure based on autonomy / self-direction of staff was introduced: few hierarchy and focus on coaching. The person who gets support is point of reference.
    • Continuous communication and actual information for everyone on internet site.
    • New education and additional training for staff was developed with the focus on support.
  • 70. 架構
    • 只有實際照顧系統需要改善 :
    • 有很強的的組織層級 , 產生了許多的管理者與中階主管 .
    • 溝通需要經過這些層級 .
    • 大部分的工作人員接受過照護訓練 .
    • 需要改變與發展個人所需的支持 :
    • 新的組織架構是建立在工作人員的自治 / 自我引導 : 層級少並著重教導 . 得到所需的的支持是參考的重點 .
    • 持續的溝通並透過網路提供所有人正確的資訊 .
    • 為員工 發展聚焦在支持的 新 教育與額外的訓練 .
  • 71. Dutch government policies
    • The government has encouraged the transition from large-scale care institutions to small-scale distributed services as reflected in the National Program on Community Care (Vliegenthart, 2000). There is however no obligation.
    • In spite of this major shift in government policy, services in the Netherlands are generally still very traditional. Arduin still is the only institution that has completely deïnstitutionalised.
    • As Van Gennep (2003) points out there is a splitting in the Netherlands, a bisection, in the support of people with intellectual disabilities.
      • One the one hand 32,000 people with mostly moderate or mild intellectual disabilities are supported in the community: this mainly concerns people without additional problems (multiple handicap, or psychiatric and behavioural problems). These people profit from the new insights.
      • On the other hand still about 32,000 people with intellectual disabilities live in institutions: this mainly concerns people with severe or profound and / or multiple disabilities and people with an intellectual disability and severe psychiatric and behavioural problems. Obviously one is inclined to think that people with severe or profound and / or multiple disabilities and people with an intellectual disability and severe psychiatric and behavioural problems are better of in an institution.
    • The organisation for service providers is in general on the conservative side, as well as some parents organisations.
    • The Inspection of Health Care (only) by now starts to think in terms of outcomes, in terms of what is necessary for QOL, which could be an important step.
  • 72. 荷蘭政府政策
    • 藉由全國性社區照顧方案 ( National Program on Community Care ) (Vliegenthart, 2000) 政府鼓勵大型教養院轉型為小規模分散式的服務 . 但並不是義務 .
    • 除了上述主要政策的轉移 , 一般來說荷蘭的服務還是很傳統 . Arduin 仍是唯一一個完全去機構化的教養院 .
    • 如 Van Gennep (2003) 指出在支持智能障礙者荷蘭現正面臨分裂 , 處於對分的狀態 .
      • 一方面有將近 32,000 的輕或中度智能障礙者在社區中獲得支持 : 主要是沒有其他問題 ( 多重障礙、或精神與行為問題 ). 這些障礙者從這個新觀點受益 .
      • 在另一方面仍然有 32,000 的智能障礙者住在教養院 : 主要是考量他們是重度或極重度智能障礙 , 及有精神與行為問題 . 顯然的人們傾向認為教養院是比較適合重度或極重度和 / 或是多重智能障礙 , 或是有精神與行為問題者 .
    • 一般而言 , 服務提供組織是比較保守 , 某些父母也是如此 .
    • 現在開始思考將健康照顧 ( Health Care ) 檢核視為成果的一部分 , 生活品質的必要性將可能是關鍵 .
  • 73. What promoted deinstitutionalisation in other countries?
        • Often parents were strong advocates of ‘community-living’
        • The Civil Rights movement made that the right to live in the community became a legal right
        • Mass media gave a lot of attention to the denial of basic human rights and human dignity of residents in institutions
  • 74. 在其他國家是什麼促進去機構化 ?
        • 通常家長是 ‘ 社區居住 ’ 的有力倡議者
        • 人權運動使得居住在社區變成法定的權利
        • 大量媒體注意到教養院住民基本人權與尊嚴的不公平對待
  • 75.
        • Legislation on several areas (financial support for children at home in the community, inclusive education, financial resources from national to local government, the Swedish government taht wanted all the institutions to be closed by the end of the 20th century )
        • Research on the consequences supported the proces of deinstitutionalisation
        • Deinstitutionalisatie: moving people out of the instityutions ánd avoiding that people are hospitalised in institutions !
  • 76.
        • 許多層面的立法 ( 為在社區家中的兒童提供經濟支持、融合教育、從中央到地方的經濟資源、 瑞典政府希望在 20 世紀末關掉所有的教養院 )
        • 研究的結果支持去機構化的過程
        • 去機構化 : 將人們從教養院裡移出 , 並避免將人們安置到教養院 !
  • 77. Experiences with deinstitutionalisation in other countries: some findings
    • Improvement of adaptive skills turns out in all research
    • 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!
  • 78. 其他國家去機構化的經驗 : 一些發現
    • 在所有的研究都發現適應技能獲得改善
    • 雖然之前父母有些顧慮 , 但大多數的家長在子女搬到社區後都感到滿意 . 在搬到社區之前大部分是負面的 .
    • 有更多的智能障礙者在社區中出現
    • 他們在社區中有更多類型的活動
    • 他們有更多的選擇並更能有效的做選擇
    • 家人探訪也更為頻繁
    Arduin 的經驗亦確認了這些發現 !
  • 79. 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.
  • 80. 舉例來 : 雖然之前父母有些顧慮 , 但大多數的家長在子女搬說到社區後都感到滿意 . 在搬到社區之前大部分是負面的 .
    • Arduin 的研究顯示 :
    • 一般而言顧客家人對支持品質是正向的 : 超過 81% 感到滿意 ; 超過 21% 感到非常滿意 .
    • 父母對行為與個人功能是正面的 : 顧客更為獨立、更有活躍、比較不緊張以及更滿意 .
    • 父母與工作人員發現生活品質大為提升 .
  • 81. The findings as reported in several studies in Arduin 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
  • 82. Arduin 對個人生活功能改善的一些發現摘要如下 :
    • 顧客的適應技能獲得改善 : 顧客更為獨立、發展新的技能或是重拾舊的技能
    • 在新環境上、個性上、社會技能與其他技能上展現出他們的個人成長 ; 對舊顧客也同樣適用
    • 顧客更有自尊
    • 似乎有更多的顧客住在社會中
    • 大多數的顧客對休閒活動與友誼感到滿意
    • 更多且不同的日間活動 ; 品質更好的日間活動
    • 更多的自我決策 / 顧客的”參與”增加
    • 侵略性與問題行為減少
    • 安全感增加
    • 較少挑戰性行為
    • 居住品質獲得改善 / 更有隱私
  • 83. The client’s view in Arduin
    • Evaluation by means of qualitative research
    • Focusgroups
    • Narrative inquiry
  • 84. Arduin 顧客的觀點
    • 用質化研究來做評估
    • 焦點團體
    • 敘事訪談
  • 85. Focusgroups
    • Important themes for the clients were:
    • a good health,
    • a good house to live in,
    • living how and with who you want ( on your own, with four, with a special somebody, with less support, more independent, in a normal street),
    • living independent (learning to live on my own, freedom, doing what I want, more time for myself, less support)
    • learning and support in learning,
    • work and variation in work,
    • self-determination (making choices, they may give advice),
    • commitment,
    • relations ( it is nice to work with people together you learn from one another, contacts with cousins, neighbors, it clicks in the street, friends of the football, I like to have more contacts, importance of the family, personal assistant, together is easier and more fun, acquaintances of the church).
  • 86. 焦點團體
    • 對顧客重要的議題是 :
    • 有良好的健康 ,
    • 有良好的居住房舍 ,
    • 跟想要的人住及怎麼住 ( 自己住、四個人住、跟特定的某人住、更獨立、住在一般的街道上 ),
    • 獨立居住 ( 學習自己獨居、自由、做自己想做的、有更多自己的時間、較少的支持 )
    • 學習並支持學習 ,
    • 有工作且多樣化的工作 ,
    • 自我決策 ( 做選擇、提供建議 ),
    • 有承諾 ,
    • 人際關係 ( 跟別人一起工作是好的 , 你可以互相學習、跟表兄妹們或鄰居有接觸、有踢足球的朋友、想要有更頻繁的接觸、家人的重要性、個人助理、一起做比較容易也比較有趣、教會認識的人 ).
  • 87. The stories of clients
    • All these stories picture the importance of self-determination: being able to do what you want, choosing your own house, your own job, not doing everything together with others, not getting more support then you really need!
    • For Piet it was a problem that in the past he had to do a lot of activities with the group
    • Cocky likes he fact that she can choose her work now for herself
    • Trudy likes he fact that she nowadays doesn’t get more support than she actually needs. She doesn’t have to show consideration with so much others. It was a relief that she doesn’t have to feel controlled all the time.
    • Willie first did some work placements, before she decide where she wanted to work
    Self - determination
  • 88. 顧客的故事
    • 所有的這些故事描繪出自我決策的重要 : 能做你想做的事、選你自己的居住房舍 / 你自己的工作、不用什麼事都跟每個人一起做、不需獲得超過自己真正所需的支持 !
    • 對 Piet 而言是個問題 , 因為以前他做很多活動都需要以團體的方式進行
    • Cocky 喜歡現在可以選擇自己的工作
    • Trudy 喜歡現在得到切合自己實際需求的支持 . 她不需要處處展現體貼 . 對她來說這是個解脫 , 不需要時時刻刻要掌控 .
    • Willie 在決定想在哪工作之前 , 先安排一些工作安置
    自我決策
  • 89. Inclusion
    • They express the wish to participate in the society, of inclusion, and of living in a normal way, in a normal neighborhood, with plenty contacts in he society, with friends nearby, with family, and with others.
    • Jeannete in the past did’t like at all gong back to the institute from a weekend at her parents home. Now she lives in a small house of her own she likes going home again.
    • Piet lives in a normal neighborhood and gets far more opportunity to get to know other people from outside the organization.
  • 90. 融合
    • 他們表達希望參與社會、融合、住在一般鄰里之中、過著一般的生活、跟他的社會有很多的接觸、朋友住在附近、有家人以及和其他人在一起 .
    • Jeannete 之前不喜歡每次周末都要離開父母家回到教養院 . 現在她自己有個小房子 , 她再次喜歡回家 .
    • Piet 住在一般的鄰里中 , 比住在機構有更多的機會認識其他人 .
  • 91. Empowerment
    • They also strongly picture the importance of empowerment, personal development, getting the opportunity to learn, follow courses and learn in practice:
    • Piet, Willy, Trudy and Cocky like the opportunities they get nowadays to learn,
    • Lian has a course in reading,
    • Wim and Willy learned computering,
    • Willy learned to handle money etc.
  • 92. 賦權
    • 他們同樣強烈表達賦權、個人發展、有機會學習、依循課程與學習運用的重要性 :
    • Piet 、 Willy 、 Trudy 和 Cocky 喜歡現在這樣有機會可以去 ,
    • Lian 參加閱讀課 ,
    • Wim 和 Willy 有學過電腦 ,
    • Willy 學習處理金錢等
  • 93. Dehumanisation of the institute
    • In some of the stories clients tell us of the inhuman way they were treated in the past:
    • Mieke talks about having to sleep in a dormitory, with 11 others, not having a place for your own, being in the bathroom at the same time waiting naked for your turn, in pyjamas at five in the afternoon,
    • Willie tells about still having nightmares about the time that she lived in the institute.
  • 94. 教養院的非人性化
    • 他們陳述之前在教養院被非人性化對待的一些故事 :
    • Mieke 提到跟 11 個人一起睡在宿舍 , 沒有屬於自己的地方 , 在浴室光著身子等著輪到自己 , 下午五點就穿著睡衣 ,
    • Willie 說到現在仍然會做惡夢 , 夢到住在教養院的情 形 .
  • 95. Findings on Q.O.L., from a study among personal assistants and parents / relatives Emotional well-being
    • Personal assistants
    • Persons feel well
    • Many positive changes in behavior and personality, more relaxed, independent, more satisfied, feeling of safety
    • Parents / relatives
    • Positive with regard to behavior and personality: more independent, dynamic, less tense, more satisfied.
    • More safe than at the institute (say 80% of the parents)
  • 96. 從個人助理與父母 / 親戚對生活品質的研究發現 情緒福祉
    • 個人助理
    • 個人覺得良好
    • 在行為與個性上有許多正向的改變、 較放鬆、獨立、 更滿意、 感到安全
    • 父母 / 親戚
    • 在行為與個性上是正向的 : 更獨立、活躍、較不緊張、更滿意 .
    • 比住在教養院安全 (80% 的父母 )
  • 97. Material well-being
    • Personal assistants
    • Good housing, more properties, better quality of daily activities
    • For everyone a room of their own, many with their own sanitary facilities
    • Parents / relatives
    • The majority is positive with regard to the move
    • Most houses are adequately adapted to the needs of the persons
  • 98. 物質福祉
    • 個人助理
    • 良好的房舍、更多的所有物、較有品質的日間活動
    • 每個人有自己的房間 , 許多有自己獨立的衛浴
    • 父母 / 親戚
    • 大多數對這樣的搬遷是正向的
    • 大多數的房舍有依照個人需求做適當的改善調整
  • 99. Physical well-being
    • Personal assistants
    • The care fits more to the needs of the persons
    • Enough qualified personnel
    • Parents / relatives
    • More attention for physical well-being
    • Less adequately qualified personnel present
    N.B. In numbers there is more (qualified) personnel at work than in the past.
  • 100. 生理福祉
    • 個人助理
    • 提供的照顧更符合個人的需求
    • 足夠符合資格的工作人員
    • 父母 / 親戚
    • 更關心生理福祉
    • 較少符合資格的工作人員
    N.B. 數據上顯示比之前有更多 ( 符合資格的 ) 工作人員 .
  • 101. Personal development
    • Personal assistants
    • A majority sees positive changes in competences: more independent, new skills develop, more self-confident and direct in what they want
    • A lot of education
    • Parents / relatives
    • Positive changes in skills
    • More opportunities to learn new skills at courses and in daily life
  • 102. 個人發展
    • 個人助理
    • 大部分在能力上有正向的改變 : 更獨立、發展新的技能、更有自信與自主
    • 有許多的教育
    • 父母 / 親戚
    • 技能上有正向的改變
    • 有更多的機會在課程與日常生活上學習新技能
  • 103. Self-determination
    • Personal assistants
    • a personal plan for every person
    • more privacy, more self-determination in daily life, more choice in daily activities, learning to choose
    • it is not always easy to find a house as one wants
    • financial possibilities are limited
    • Parents / relatives
    • less optimistic as to whether their relative can choose himself
    • more choice for the persons, however sometimes limited (e.g. with regard to housing), more self-determination in daily life, as in courses
    • privacy is nowadays guaranteed: a strong improvement
  • 104. 自我決策
    • 個人助理
    • 每個人都有一份個人計畫
    • 更有隱私、對日常生活有更多的自我決策、日常活動有更多的選擇、學習做選擇
    • 找到個人想望的房子總是不容易的
    • 財務的可能性是有限的
    • 父母 / 親戚
    • 較不樂觀
    • 個人有更多的選擇 , 不過還是有限制 ( 例如居住 ), 在日常生活與課程上有更多的自我決策
    • 現在隱私是獲得保證的 : 有顯著改善
  • 105. Interpersonal relations
    • Personal assistants
    • 80% of the clients is satisfied as to their social contacts, in spite of their limited and one-sided network
    • Parents / relatives
    • No more frequency in contact; reasons are the personal circumstances of the parents themselves: the kind of living environment is no more seen as a problem in this
    • limited social networks of the persons, as before
    • more contacts with other people in the community
  • 106. 人際關係
    • 個人助理
    • 儘管是有限且單向的網絡 , 80% 的顧客對他們的社會接觸感到滿意
    • 父母 / 親戚
    • 無更頻繁的接觸 ; 原因是父母的個人狀況 : 居住的環境已不再視為是個問題
    • 跟以前一樣個人的社會網絡是有限的
    • 跟社區的其他人士有更多的接觸
  • 107. Inclusion
    • Personal assistants and Parents / relatives
    • Persons live in the community, in normal houses
    • Part of the life is spend within the organisation of Arduin (school, work…)
  • 108. 融合
    • 個人助理與父母 / 親戚
    • 住在社區中 , 住在一般的房子
    • 部分的生活是跟 Arduin 一起 ( 上學、工作 … )
  • 109. Conclusion: Deinstitutionalisation
    • The positive results of the process of deinstitutionalisation in Arduin are in general in line with results elsewhere.
    • In this process the focus has to be on quality of life: on inclusion, personal development and self-determination
    • Consistent implementation of the consequences of these ideas and designing community oriented support services requires creativity, nerve and flexibility to change based on advancing insight: strong leadership is required as is a continuous dialogue with all stakeholders.
    • Much attention is needed for support in (re)establishing the social networks of persons who sometimes for years were segregated from community!
  • 110. 去機構化 : 結論
    • Arduin 去機構化過程的正向結果 , 一般而言跟世界各地的結果是一致的 .
    • 在過程中應把焦點放在生活品質 : 融合、個人發展與自我決策
    • 要持續一致的落實執行這些理念 , 並設計以社區為本位的支持服務是需要具創意、勇氣與彈性 , 改變的基礎是以往前的洞察力 : 強而有力的領導統御是需要的 , 要跟所有的利害關係人士持續對話 .
    • 對長久被隔離在社區之外的障礙者 , 可能需要花很多的關注力來支持發展社會網絡 !
  • 111. How do you manage the quality of service from home to home?  1
    • 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.
    • Importance of an Individual Support Plan for every client based on QOL-framework and Supports Paradigm.
    • Transparency: The daily reports in the ISP can be read via the internet. Also parents who have gotten the password from their child can read these daily reports.
    • In the homes there works a team of supportworkers and mostly one woman or man who is mainly responsible for the housekeeping. This team is autonomous, selfdirective, without a leader. They share the responsibility for the work that needs to be done, and formally divide the several tasks.
    • For every team of workers there is a coach (10 coaches for the whole organisation), who coaches the team in performing their job
  • 112. 如何管理服務品質 ?  1
    • 在 Arduin 我們的選擇是把管理的焦點放在生活品質而非照顧品質 : 組織要做的是提升個人成果 .
    • 每位顧客有其個別支持計畫 ( Individual Support Plan ), 而這計畫是以生活品架構與支持典範為基礎是非常重要的 .
    • 透明化 : 可透過網路看到 I SP 的每日紀錄 . 獲得授權有密碼的父母 , 也可察看子女的每日報告 .
    • 在居住家庭 , 支持工作者通常是團隊工作 , 大部分會有一個人主要是負責家務 . 這團隊是自治、自主引導 , 並沒有所謂的領導者 . 他們分享須完成的工作責任 , 並把一些工作做正式的區分 .
    • 每個工作團隊會有一個教練 ( 整個組織有 10 教練 ), 負責教導團隊執行他們的工作 .
  • 113. How do you manage the quality of service from home to home?  2
    • A personal assistant for every client who doesn’t work in (the team of) the home: this person is in a continuous dialogue with the client about: do you get the support that you want and as you need. This personal assistant then supports / empowers the client in his position towards the supportworkers.
    • Every client has a psychologist who takes responsibility for a good quality of the ISP. He / she supports the supportworkers in implementing the ISP. As we organise it now the psychologist is connected to the house. The psychologist is also responsible for the quality of the pedagogical climate in the home: respect, warmth, self-determination of clients, etc.
    • There are several protocols, on the website of Arduin, regarding procedures about how to deal with several themes: e.g. sexual abuse, restraints, alcohol, privacy, medication, etc. etc.
    • Arduin has an ISO 9001-certificat. This implies that on a regular base audits are done, by Arduin-auditors as well as by an external bureau.
  • 114. 如何管理服務品質 ?  2
    • 每位顧客有他自己的個人助理 , 但這位個人助理並不負責這個家 : 個人助理須持續不斷的與顧客對話 : 是否得到你想要與需要的支持 . 然後個人助理協助支持 / 賦權顧客站在他的角度跟支持工作者互動 .
    • 心理師負責每位顧客有良好品質的 ISP . 他 / 她協助支持工作者執行 ISP. 就像我們現在的運作 , 心理師跟每個家是連結在一起的 . 心理師也需要負責每個家教學氛圍的品質 : 尊重、溫暖、自我決策等 .
    • 在 Arduin 的網站上有一些議題執行程序的議定書 : 例如性侵害 、約束、飲酒、隱私、藥物治療等 .
    • Arduin 通過 ISO 9001 的認證 . 表示通過 Arduin 內外部單位的定期審核 .
  • 115. How do you figure the staff ratio, especially in terms of economy of scale, workloads, etc? 
    • It is the responsibility of the managers in charge of the houses and workplaces of Arduin to match the support needs of the clients to the staff ratio.
    • They can be advised by the psychologists on the support needs of the clients. Objective measures are in the scores on the Supports Intensity Scale.
    • Relatively new in the Netherlands: In the resource funding system in the Netherlands, clients get a ‘package of care’ that correspondents to the support they need. There are 8 packages, ZZP1 – ZZP 8, dependent on how much support one needs. These package give the right to an amount of money as well as to an amount of daily hours support. The Management Information Sytem of Arduin gives insight in the clients with their ‘package’ per house. So the manager knows what he can spend per house.
  • 116. 如何計算工作人員比例 , 特別是經濟規模、工作量等 ? 
    • Arduin 居住家庭與工作點顧客的支持需求和人員之間的配比是由管理者負責 .
    • 心理師可提供顧客支持需求的建議 . 可用 SIS 分數作為客觀衡量的依據 .
    • 在荷蘭新興的現況是 : 在荷蘭的資源經費系統 , 顧客會依他們的支持需求得到一份 ‘ 照顧套裝組 ( package of care ) ’. 總共有 8 個套裝組 , ZZP1 – ZZP 8, 是依據個人需要的支持 . 依照所得的套裝組 , 個人有權獲得一定數量的經費與一定數量的每日支持時數 . Arduin 的管理資訊系統提供每個家每位顧客的 ‘ 套裝組 ’ . 所以管理者會知道每個家可使用的經費 .
  • 117. Which were the reactions of the professionals?
    • In the beginning: in general they agreed but were very uncertain
    • Then: difficult, sometimes (very) reluctant
    • In the end: enthusiastic and satisfied! No one wants to go back to how it was!
  • 118. 哪些是專業人員的反應 ?
    • 開始之初 : 一般來說他們都同意 , 但很不確定
    • 之後 : 覺得困難 , 有時 ( 很 ) 抗拒
    • 最後 : 熱心並滿意 ! 沒有人想回到過去 !
  • 119. And what about leisure activities and loneliness for people living in the community?
    • Social inclusion is seen as an important factor in QOL (Schalock, 2008) with community integration, community roles and participation as important indicators
    • Leisure is an important indicator for Well-being (Schalock, 2008)
    • A study of Zijlstra & Vlaskamp (2005) shows very little leisure activities for people with Profound Intellectual and Multiple Disabilities, living in residential facilities, with a very minor proportion spent outside the living unit, and a limited variety of activities
  • 120. 那麼有關休閒活動與住在社區是寂寞的問題 ?
    • 社會融合是生活品質的要素之一 (Schalock, 2008), 社區統合、社區角色與參與亦是重要的指標
    • 休閒是福祉的重要指標 (Schalock, 2008)
    • Zijlstra 與 Vlaskamp 的研究 (2005) 顯示對極重度智能障礙和多重障礙者而言 , 休閒活動非常少 , 住在機構中 , 很少離開居住單位 , 而活動的種類也有限
  • 121.
    • Some of the risks of deinstitutionalisation that are often thought of are empty hours, limited variety of leisure activities, loneliness and passivity .
    • In a study in Arduin with focus groups one of the results is ‘ that mosts clients are very satisfied with the leisure activities and friendships ’ (Van der Wielen & Calis, 2005)
    • Feeling lonely is often seen as a disadvantage of deinstitutionalisation, although studies show that this feeling is not dependent on living in the community or in the institution; people are not more lonely living in the community (Kwekkeboom, 2006, 2007)
    • Loneliness is much less than often thought of (Kwekkeboom, 2007)
  • 122.
    • 有些認為去機構化的風險是呆滯時間、休閒活動種類有限、寂寞與被動 .
    • 在 Arduin 焦點團體發現的一項結果是”大多數的顧客非常滿意他們的休閒活動與友誼” (Van der Wielen & Calis, 2005)
    • 感到寂寞通常是去機構化的一項劣勢 , 雖然研究顯示這樣的感覺跟住在社區或是教養院不一定相關 ; 住在社區不一定會比較寂寞 (Kwekkeboom, 2006, 2007)
    • 寂寞通常遠低於被認為的 (Kwekkeboom, 2007)
  • 123. And the the question about the costs?????
    • The fact that Arduin exists now for over 15 years as a, financially sound, community based organisation, with the budget for a residential institution, proves that the costs are not higher!
    • However, it is all about developing a new model, a supports model , for the support of people with intellectual disabilities!
  • 124. 那麼有關花費的問題 ?????
    • 到現在 Arduin 已經維持 15 年了 , 財務上是健全的 , 以社區為本位的組織 , 使用的是居住式教養院的預算 , 證明成本沒有比較高 !
    • 不過 , 重點是發展新的模式 , 一個支持模式 , 為智能障礙者提供支持 !
  • 125. Some thoughts on Improving Quality of Life (Schalock et al., 2007)
    • Individual supports are the means to improve quality of life
    • The community is the context of a life of quality; service-providers as bridges to the community
    • In providing services to people with intellectual disabilities it is important to use person-centered planning , to provide support on an individual base and to involve the clients in planning and evaluation of the supports provided
    • In evidence-based practice the outcomes of supports are measured in terms of QOL and used for quality improvement
  • 126. 一些有關生活品質的想法 (Schalock et al., 2007)
    • 個別化支持 是改善生活品質的方法
    • 社區是生活品質的脈絡 ; 服務提供者是與社區間的橋樑
    • 服務智能障礙者應使用以 個人為中心的計畫 , 提供 個別化的支持 , 並讓 顧客 參與支持計畫的擬定與評估
    • 以證 據 為 基礎 的 實 作 , 是透過 生活品質來評估支持成果 , 並用來作為 品質改善 .
  • 127. A person centered support system Input Througput Output
    • the goals and perspectives of a person,
    • his or her support needs and
    • the quality of his / her life at a certain moment in time
    A Individual Supports Plan, based on and in line with the input
    • Quality of Life.
      • This QOL therefore should be measured as a personal outcome of supports.
    On the micro level:
  • 128. 以 個人為中心的支持系統 輸入 過程 輸出
    • 個人的目標與觀點 ,
    • 個人所需的支持 , 及
    • 特定 階段的生活品質
    個別化支持計畫 , 是 以 輸入 為基礎並要相符
    • 生活品質 .
      • 因此 以 生活品質作為個人 支持 成果的 衡量 .
    微視層級 :
  • 129.  
  • 130.  
  • 131. Personal Outcomes Scale A Scale to Assess an Individual’s Quality of Life Dr. Jos van Loon Prof.dr. Geert van Hove Prof.dr. Robert Schalock Lic. Claudia Claes 2008
  • 132. 個人成果量表 評估個人生活品質的量表 Dr. Jos van Loon Prof.dr. Geert van Hove Prof.dr. Robert Schalock Lic. Claudia Claes 2008
  • 133. Example of a POS Profile of an Organisation
  • 134. 以一個組織為例其個人成果量表側面圖
  • 135. Example of a POS Profile of a location
  • 136. 以一個地點為例其個人成果量表側面圖
  • 137. Example of a POS Profile of a client
  • 138. 以一個顧客為例其個人成果量表側面圖
  • 139. QOL, attitude and behavioral support
  • 140. 生活品質、態度及行為支持
  • 141. Paulo Freire “ Education can never be neutral. Either it is an instrument for liberation of man, or it is an instrument for enslaving, drilling him for oppression"(Freire, 1985).
  • 142. 保羅弗雷勒 ( Paulo Freire ) “ 教育永遠不可能是中立的 . 若不是作為爭取解放的工具 , 就是為了奴役與壓迫 "(Freire, 1985).
  • 143. John McGee, Gentle Teaching A morality of consequences vs. a morality of connectedness
  • 144. 溫柔教學法 ( John McGee ) 道德後果 vs. 道德連結
  • 145. Gentle Teaching
    • Companionship
    • Psychology of Interdependence
    • Teaching the value of human presence
  • 146. 溫柔教學法
    • 友誼
    • 心理學的互相依存
    • 教導人存在的價 值
  • 147. Fundament al needs and vulnerabilities .
    • Feeling safe and secure
    • To be engaged with fellow men
    • Unconditional valuing
  • 148. 基本需求與易受傷害性 .
    • 感到安全與可靠
    • 跟一般同胞們一起從事參與
    • 無條件的重視
  • 149. Important them e s in Gentle Teaching :
    • respect, accepta nce , toleran ce , affecti on , friendship , warmt h
    • The wish to engage in solid relati ons
    • Human dignity
    • Justice and solidarity
    • Freedom and liberation
    • Interdependence between the person with a support need and the support worker
    • equivalence
    • The totality of the person , instead of fo cuss ing on eventual behavioural problems
    • a democrati c attitude
    • a n authenti c attitude
    • Participati on of the cli e nt
    • Communicati on with the cli e nt: engaging in a real dialog ue with the person
    • non - contingent valuing of the person
  • 150. 溫柔教學法的重要議題 :
    • 尊重、接納、寬容、情感、友誼、溫暖
    • 希望建立牢固的關係
    • 人的尊嚴
    • 正義與團結
    • 自由與解放
    • 支持需求者與提供支持者間的相互倚賴
    • 對等
    • 全人 , 而非只著重在最終的行為問題
    • 民主的態度
    • 誠懇的態度
    • 顧客的參與
    • 與顧客溝通 : 真正跟個人產生對話
    • 人無條件的價值
  • 151. The instruments with Gentle Teaching
    • Our mo uth : language , word s , verbalit y
    • Our hands : touch, tactile contact
    • Our face , mim e and our posture
  • 152. 溫柔教學法的工具
    • 我們的嘴 : 語言、言詞 , 口語
    • 我們的手 : 碰觸、觸覺接觸
    • 我們的臉、模仿和我們的姿勢
  • 153. Demonstration of the Arduin website
    • Housing Bureau
    • Vacancy bank
    • Academy for Quality of Life
    • Personal Plan
    • Information, protocols etc.
    • Management Information
    • Etc.
  • 154. Arduin 網站示範
    • 住宅局 (Housing Bureau)
    • 職缺銀行 (Vacancy bank)
    • 生活品質學院 (Academy for Quality of Life)
    • 個人計畫 (Personal Plan)
    • 資訊 、議定書等 (Information,protocols)
    • 資訊管理 (Management Information)
    • 其他
  • 155. Summarizing: Key Factors in this organizational change
    • A clear vision
    • Simple communication that provides guidance, knowledge, and understanding
    • Constructive engagement
    • Organizational changes / generate short term gains
    • Anchoring the new approach in the organization’s culture
  • 156. 總結摘要 : 組織變革的關鍵因素
    • 有清楚的願景
    • 簡單明晰的溝通以作為指引、知識與理解
    • 有建設性的從事
    • 組織的變革 / 產生短期的收穫
    • 將新的方式定注於組織的文化中
  • 157. A clear vision
    • A necessary condition to bring about change was the leadership of the CEO and management team.
    • A focus on quality of life (QOL) and on the support-paradigm was continuous during the program changes. It was concluded that from the eight domains inclusion, self-determination and personal development were especially influential in the shift from ‘total care’ to ‘support’. There is a clear focus on long-term person-referenced outcomes.
    • It was essential in the change that the focus on QOL was carried through consistently in all of the decisions made, at the organizational level as well as at the individual level.
    • In this process sometimes a lot of creative thinking is necessary. For example: because of expanding costs of transport, Arduin started its own taxi-company, to reduce the costs of buying cars (taxi company has lower taxes when buying a car). There are no problems, only challenges.
    • Regarding the focus on QOL there is no “yes, BUT,…”.
  • 158. 清楚的願景
    • 帶來改變的必要條件是執行長與管理團隊的領導統御 .
    • 在方案改變的過程中 , 是持續不斷的聚焦在生活品質 (QOL) 與支持典範 . 在八大領域中 , 影響從”完全照顧”到”支持”模式的重要領域是融合、自我決策與個人發展 . 清楚著重在長期以個人為參照的成果 .
    • 在改變的過程中 , 無論是在組織或是個人層級的所有決定都應一致落實生活品質的執行 , 這是不可或缺的 .
    • 在執行的過程中有時候是需要創造性的思考 . 例如 : 因為交通費用擴增 , Arduin 開始了自己的計程車行 , 以降低買車的費用 ( 計程車行的購車稅較低 ). 沒有所謂的難題 , 只有挑戰 .
    • 聚焦在生活品質沒有 “ 是的 , 但 …” .
  • 159. Simple communication that provides guidance, knowledge, and understanding
    • Good communication was very important: a) communication on the processes in the organization with clients, parents and legal representatives (client board, regular meetings with clients and with parents; b) communication with staff members (collective meetings and the works committee).
    • A good system of communication was an important condition. In an institution with hierarchical lines, with all personnel on a campus, communication seemed easier than within an organization with many small parts spread over the region. The website of Arduin is a communication system, providing continuous and actual information, which allowed quick and easy communication). In fact this was used as a tool for dismantling. Think about a housing agency, a vacancy bank (no placement commissions anymore), the e-mail function, the electronic personal plan of clients including the possibility for parents –if they are authorised- to follow and co-influence at home the ISP of their son or daughter.
  • 160. 簡單明晰的溝通以提供指引、知識與理解
    • 良好的溝通是很重要的 : a) 在組織與顧客、父母與法律代表溝通過程 ( 顧客委員會、與顧客及家長定期開會 ) ; b) 跟工作人員溝通 ( 集體會議與工作委員會 ).
    • 有良好的溝通系統是個重要條件 . 在階級式的教養院 , 所有工作人員都在園區裡 , 看起來似乎比小單位散佈在整個地區來得容易溝通 . Arduin 的網站是個溝通系統 , 提供持續且實際的資訊 , 其溝通快且容易 . 事實上這也是用來作為解構的工具 . 想想看住宅中介單位與職缺銀行 ( 再也不需要安置委員會 ), 電子信件 ( e-mail ) 的功能 , 顧客的電子化個人計畫 , 只要家長有授權他們也可以在家追蹤與一同影響子女的 ISP.
  • 161. Constructive engagement
    • The meetings with clients, parents and with staff were also important to engage the important stakeholders in the organisational changes. All staff members in the reorganisation got a job and salary guarantee, and were asked for willingness to change job profiles if this would be necessary.
    • A lot of energy and time was invested in schooling and training for clients, aiming at empowerment, learning them to speak up for themselves, so they could co-determine the tempo of the deinstitutionalisation, providing them with skills that were helpful in community living.
    • Also regular and additional training of the workers was an instrument to support the process of change. Workers had to learn to support people in community based settings, with new roles and new responsibilities, as most of them were trained primarily in nursing for people with ID. The emphasis was on values training: changing attitudes and habits of the staff.
    • Arduin developed in co-operation with two training colleges and two other organizations working for people with ID a new education for Support Workers in the Netherlands.
    • This huge effort in schooling and training resulted in the Arduin Academy on Quality of Life, in which the Model on QOL is the framework, within which all courses are developed and given.
  • 162. 有建設性從事
    • 在組織變革的過程中 , 跟顧客、父母與工作人員的會議同時也要有重要利害關係人士的參與 , 這是重要的 . 在組織重組中 , 所有的工作人員都應當獲得工作與薪資上的保證 , 如果職務需變動 , 也應詢問他們的意願 .
    • 許多的努力與時間是投注在顧客的教育與訓練 , 其目標是賦權、學習為自己發聲 , 所以他們可以一起來決定去機構化的節奏 , 提供技能以幫助他們在社區生活 .
    • 另外定期且額外提供工作人員訓練也是支持這變革過程的方法之一 . 工作人員須學習在社區的情境下提供支持 , 有新的角色與職責 , 因為他們之前受的訓練主要都是以護理照顧為主 . 強調價值觀的訓練 : 是改變工作人員的態度與習慣 .
    • Arduin 跟兩所訓練學院與兩個智能障礙服務組織 , 針對荷蘭支持工作者的教育訓練 , 發展合作訓練的方式 .
    • 這項重大的教育和訓練努力造就了 Arduin 的生活品質學院 , 這個模式是以生活品質為架構 , 在此架構下發展與開設所有的課程 .
  • 163. Organizational changes / generate short term gains 1
    • The organisation was adjusted fundamentally to working within the support model.
    • Necessary decisions to change parts of or procedures in the organisation were implemented fast. Often it is best that there is no way back to the old situation: this enhances the appeal on creativity when faced with a new challenge.
    • Arduin introduced the coaching model and abolished the complete level of the middle management. Hierarchy is at right angles to self-determination for clients. Houses and work- or activity units work with self-directive autonomous teams.
    • Everything should be new, so that there came no transplantations of old patterns. New job profiles were introduced such as the job of support-worker, who does the actual support in the house or at the work, and the personal assistant.
  • 164. 組織的變革 / 產生短期的收穫 1
    • 組織在支持模式運作下 , 從根本上做調整 .
    • 進行部分或組織程序上必要改變的決定變得快速 . 好的是通常已經無法回到過去的教養院了 : 當遇到新的挑戰時 , 這會提升引發創造力 .
    • Arduin 採用教練模式 ( coaching model ) , 並完全拋棄了中階管理 . 居住與工作或日間活動單位一同工作 , 成為自我引導的自治團隊 .
    • 每件事應當都是新的 , 所以沒有舊模式的移植 . 就像支持工作者這新的工作職責 , 是在家或是在工作場所提供實際的支持 , 個人助理亦是如此 .
  • 165. Organizational changes / generate short term gains 2
    • As many old jobs disappeared, one searched for the second talent of all staff members to realize the promised job guarantees. For example a former cook of the institutional kitchen now works on ICT.
    • A lot of bureaucracy was abolished, as the focus had to be on direct support staff. Arduin has a administrative overhead of no more then 8%. Technical and maintenance services were outsourced.
    • The approach taken to health care was re-organized. The function of the ‘institutional physician’ had to fundamentally change. All clients now have their own GP who provide primary health care on an individual basis. In addition, Arduin employs a registered AVG, (a physician specialised in the care of people with ID) who can be consulted or called in by the local GPs.
  • 166. 組織的變革 / 產生的短期收穫 2
    • 當許多舊有的工作消失時 , 開始為所有員工尋找他的第二專長 , 體認到所謂的工作保證 . 例如一位以前在教養院擔任廚務的員工 , 現在是資訊通信人員 .
    • 拋棄了許多官僚制度 , 著重的焦點必須是直接提供支持的工作人員 . Arduin 上面管理階層不超過 8%. 技術與維修服務是外包的 .
    • 對健康照顧所採取的方式是重新組織 . “ 機構醫師”的功能需做根本的改變 . 現在所有的顧客都有自己的家庭醫師 , 提供個別的基本健康照顧 . 除此之外 , Arduin 雇用了一位註冊專科醫師 , ( 特別與智能障礙相關的專業醫師 ) 可提供地方開業醫師諮詢 .
  • 167. Anchoring the new approach in the organization’s culture 1
    • A System of Supports was developed, incorporating consumers in the development and implementation of their ISPs.
    • The Individualized Supports System is person centered (i.e., based on the person’s interests, preferences, needs, and natural support network); responsive (i.e., based on a ongoing dialogue between the person and those involved in the supports plan); proactive (i.e., equalizing opportunities with fellow citizens, empowers the person, generating effective social inclusion, and increasing social/community participation); and data based : important is that the System of Supports is based on the pattern and intensity of support needs of every client, measured by the Supports Intensity Scale (Thompson et al., 2004), and evaluated in terms of personal outcomes, measured by the Personal Outcomes Scale (van Loon et al. 2008).
  • 168. 將新方法定注於組織文化中 1
    • 發展出一套支持系統,將顧客含納在他們 ISP 的執行中。
    • 個別化的支持系統是 以個人為中心的 ( 即是以個人的興趣、喜好、需求與自然支持網絡 ); 回應 ( 即是以持續與個人還有跟支持計畫相關人之間的對話為基礎 ); 積極主動 ( 跟一般同胞一樣平等的機會、賦權於個人、產生有效的社會融合以及增加社會 / 社區參與 ); 及 以數據為基礎 : 重要的是支持系統是以每位顧客所需的支持型態與強度為基礎 , 可用支持強度量表來做衡量 (SIS) (Thompson et al., 2004), 然後用個人成果量表 (POS) 來衡量個人成果 (van Loon et al. 2008).
  • 169. Anchoring the new approach in the organization’s culture 2
    • In fact the choice was made to focus in the quality management on QOL instead of quality of care: what is necessary in the organisation to enhance personal outcomes. A quality of care system gives no guarantee that existing knowledge about good predictors for QOL, such as social inclusion, self-determination and personal development, are implemented.
    • This means that indicators for good quality of an organisation are (evidence based) outcome based indicators, linked to the QOL 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 from the client-interviews with the Personal Outcomes Scale can also generate organization and location profiles that can be used as important management information.
  • 170. 將新方法注入於組織文化中 2
    • 事實上是選擇聚焦在生活品質的管理而不是照顧品質 : 組織的重點是提升個人成果。照顧品質系統是無法保證已知良好生活品質的預測指標 , 例如社會融合、自我決策與個人發展 .
    • 這意味著品質良好組織的指標 ( 以實證為基礎 ) 是以成果為本位的指標,跟顧客的生活品質是相連結。輸入、過程以及個人成果與方案或者組織的輸出都應跟生活品質相關。
    • 運用訪談顧客個人成果量表 (POS) 所獲得的資料也可以用來產生組織與所在點的側面圖 , 可作為管理的重要資訊 .
  • 171. Thank you very much for your attention! [email_address]
  • 172. 感謝您的聆聽 ! [email_address]