3. 2010 成年心智障礙者社區居住與獨立生活研討會
一、活動簡介:
1993 年美國智能障礙者協會(AAMR)出版第九版「智能障礙新定義」,開啟了
為身心障礙者提供服務的革命性概念。
「障礙」不再單獨以個人身心的損傷來認定,而
以個人與所處環境的互動及來自社會環境的障礙所產生的結果來看待。於是因這概念
所延伸的生態環境評估、提供支持等概念與做法在國內廣被討論與應用。
2010 年美國智能障礙協會再出版「智能障礙 定義 分類與支持系統」 Intellectual
: 、 (
,其中將探討現行智能
Disability: Definition, Classification, and Systems of Supports)
障礙者的五項議題,重新思考其現象、如何界定及分類、服務的重點為何,預期這樣
的探討將改變服務提供者面對服務使用者的態度,朝生活品質成果調整支持模式。
現行內政部「成年心智障礙者社區居住與生活服務方案」,不僅使各地陸續成立
44 個居住單位,這種強調人性化、社區化的服務也使生活品質議題得以更深入探討,
然一份由周月清教授(陽明大學衛福所)與夏洛克博士之「台灣智能障礙者生活品質調
查結果與跨國比較」研究中1發現,台灣智能障礙者在八個面向(情緒健康、人際互動、
物質方面、個人發展、生理健康、自我決定、社會融合、權利)之生活品質平均值較美、
加、拉丁美洲、西班牙為低,顯見實務工作者、組織管理者,甚至政策規畫者均需改
變觀念,更關注服務使用者的生活品質。
本次研討會特別邀請編寫「智能障礙新定義」與發展出「支持強度評量」
(Supports
Intensity Scale 簡稱 SIS)小組成員之一的夏洛克博士,由「生活品質」為主軸講解
這種新的服務方式與概念,以及因為服務方式的改變帶來機構組織之變革,透過最新
服務概念及模式之引進,定能為我國心智障礙者社區服務之推展帶來深遠之影響。
講師介紹:Dr. Robert L Schalock
夏洛克博士為美國內布拉斯加州(Nebraska)州立海斯汀大學(Hastings College)
心理系主任(現已退休)前全美國智能障礙者協會主席(AAMR)並曾擔任中內布拉斯加
州心智障礙者服務計畫主持人(Mid Nebraska Mental Individual Services)。自一九八
五年起夏洛克博士前後來台舉行研習會十三次之多,內容包括:社區本位服務方案、
支持性就業模式、生活品質評量、自然支持、智能障礙新定義等議題,將身心障礙者
社區本位之服務模式完整的引進國內。
1
(刊載於 Chou, Y. C., & Schalock, R. L. (2009). Survey Outcomes and Cross-National
Comparisons of Quality of Life with Respect to People with Intellectual Disabilities in
Taiwan. Journal of Policy and Practice in Intel
2
7. 2010 成年心智障礙者社區居住與獨立生活研討會
Slide # 1
Part I:Addressing Five Critical Issues Regarding
Persons with Intellectual Disability
#1張
第一部分:有關智能障礙者的五項重要議題
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8. 2010 成年心智障礙者社區居住與獨立生活研討會
Slide # 2
Five Historical Issues Regarding Persons with Intellectual Disability
What to call the phenomenon (i.e. terminology)
How to explain the phenomenon
How to define the phenomenon and determine who is a member of the class
How to classify persons so defined and identified
What should be the focus of education and habilitation services
#2張
智能障礙的五項歷史議題
這現象如何稱呼(就是所謂的術語)
如何解釋
如何界定與決定分類
如何針對已界定與確認的做分類
教育及康復服務的重點為何
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9. 2010 成年心智障礙者社區居住與獨立生活研討會
Slide # 3
Currently Preferred Term: Intellectual Disability
Reflects the social-ecological construct of disability
Aligns better with current professional practices that focus on functional behaviors
and contextual factors
Provides a logical basis for individualized supports provision due to its basis in a
social-ecological framework
Is less offensive to persons with the disability
Is more consistent with international terminology, including journal titles, published
research, and organization names
#3張
現今首選的術語:智能障礙
反映出對障礙的社會-生態結構
與現今著重在功能性行為與情境因素的專業實踐能有更好的統整
為基於社會-生態架構下的個別化支持服務提供一個符合邏輯的基礎
對障礙者較不具冒犯性
跟國際的術語較為一致,包含期刊名稱、發表的研究以及組織的名稱
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10. 2010 成年心智障礙者社區居住與獨立生活研討會
Slide # 4:
Explaining Intellectual Disability
Social-Ecological Model
Etiology (Multi-factorial)
Operational vs. Constitutive Definition
# 4 張:
解釋智能障礙
社會-生態模式
病因(多因素的)
操作性 vs. 構成定義
Slide # 5:
Social-Ecological Model
The expression of limitations in individual functioning within a social context
Intellectual disability has its genesis in organic and/or social factors
These organic and social factors give rise to functional limitations that reflect an
inability or constraint in both personal functioning and performing roles and tasks
expected of an individual within a social environment
# 5 張:
社會-生態模式
在社會的環境背景下個別功能所呈現的限制
智能障礙有其有機性成因以及/或社會因素
這些有機性或社會因素造成功能上的限制,同時反映一個人在社會環境期待下
所表現的個體功能與角色和職務上的無能或約束。
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11. 2010 成年心智障礙者社區居住與獨立生活研討會
Slide # 6:
Importance of Social-Ecological Model
Exemplifies the interaction between the person and their environment
Shifts the explanation of intellectual disability away from person-centered
defectology
Focuses on the role that individualized supports can play in enhancing individual
functioning
# 6 張:
社會-生態模式的重要性
例證了個人與其環境的互動
將智能障礙的解釋從以個人為中心的缺陷做了轉移
著重在個別化支持在提升個人功能所扮演的角色
Slide # 7:
Current Models that Impact our Understanding of Intellectual Disability
and the Provision of Individualized Supports
Model of Human Functioning (ICF; AAIDD)
Quality of Life Model
Supports Model
# 7 張:
影響我們了解智能障礙與提供個別化支持的現有模式
人類功能功能模式(ICF; AAIDD)
生活品質模式
支持模式
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12. 2010 成年心智障礙者社區居住與獨立生活研討會
Slide # 8:
Model Comparisons
__________________________________________________________________________
Conceptual Basis:
ICF/AAIDD: Human functioning and dimensions of functional limitations
Quality of Life: Personal well-being
Supports: Support needs and support processes
Content:
ICF/AAIDD: Components of functioning, health conditions and context (ICF);
dimensions of functioning and supports (AAIDD)
Quality of life: factors, domains, indicators
Supports: life activity areas and exceptional medical and behavioral support needs
Assessment Focus:
ICF/AAIDD: Strengths and weaknesses in functioning; contextual barriers &
facilitators
Quality of life: objective status and personal perceptions
Supports: Pattern and intensity of support needs
Intended Purpose:
ICF/AAIDD: Description and classification (ICF); description, classification, and
planning supports (AAIDD)
Quality of life: Framework for outcomes evaluation and input for policies and
practices
Supports: Reducing discrepancy between person’s capabilities and environmental
demands
Role of the Person: More involved in Quality of Life and Supports Models
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16. 2010 成年心智障礙者社區居住與獨立生活研討會
Slide # 10:
Operational vs. Constitutive Definition of Intellectual Disability
Operational Definition: establishes the boundaries of the term and separates who is
included within the term from who is outside the term. An operational definition of
intellectual disability includes three key aspects: (a) the actual definition and the
assumptions underlying it; (b) the construct’s boundaries; and (c) the use of the
statistical concept of standard error of measurement to establish a statistical
confidence interval within which the person’s true score falls.
Constitutive Definition: defines the construct in relation to other constructs and thus
helps to understand better the theoretical underpinnings of the construct. A
constitutive definition of intellectual disability defines the phenomenon in terms of
limitations in human functioning, implies an understanding of disability consistent
with a social- ecological and multidimensional perspective, and emphasizes the
significant role that individualized supports play in improving human functioning.
# 10 張:
智能障礙的操作性 vs. 構成性定義
操作性定義: 建立該專有名詞的範疇,並區分誰是包含在這範圍內而誰不是。
智能障礙的操作定義有三個主要面向:(a) 實際的定義與假設、(b) 結構的範
疇,以及(c) 使用測量標準誤的統計概念,以建立個人真正分數落點在統計上
的信度區間。
構成性定義(Constitutive Definition): 跟其他有關的架構做定義,如此可幫助
更加了解這架構的理論基礎。智能障礙的構成性定義界定了個體功能的限制、
在符合社會-生態與多重觀點下了解障礙特質 及強調個別化支持在提升個體功
,
能的重要性。
15
17. 2010 成年心智障礙者社區居住與獨立生活研討會
Slide # 11:
Defining the Class
Operational Definition
Assumptions
Cutoff Scores
Standard Error of Measurement and Confidence Interval
# 11 張:
定義分類
操作定義
假設
切分點
測量標準誤與信度區間
Slide # 12:
Operational Definition
Intellectual disability is characterized by significant limitations both in
intellectual functioning and in adaptive behavior as expressed in conceptual,
social, and practical adaptive skills. This disability originates before age 18.
(Schalock et al., 2010, p. 1).
# 12 張:
操作性定義
智能障礙是一種同時在智力能力與適應行為上有顯著的限制,而表現在概念上、社交
上與實用的適應技能上。這種障礙發生在 18 歲以前。 (Schalock et al., 2010, p. 1).
16
18. 2010 成年心智障礙者社區居住與獨立生活研討會
Slide # 13:
Assumptions
Assumptions are an explicit part of a definition because they clarify the context
from which the definition arises, and indicate how the definition must be applied.
Thus, the definition of ID cannot stand alone.
The following five assumptions are essential to the application of the operational
definition of intellectual disability:
o limitations in present functioning must be considered within the context of
community environments typical of the individual’s age peers and culture
o valid assessment considers cultural and linguistic diversity as well as
differences in communication, sensory, motor, and behavioral factors
o within an individual, limitations often coexist with strengths
o an important purpose of describing limitations is to develop a profile of
needed supports
o with appropriate personalized supports over a sustained period, the life
functioning of the person with intellectual disability generally will improve
(Schalock et al., 2010, p. 1)
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19. 2010 成年心智障礙者社區居住與獨立生活研討會
# 13 張:
假設
假設是定義的一部分,因為假設會澄清定義的發生背景脈絡,並指出定義如何
被運用。因此,智能障礙定不能單獨成立的。
以下是應用智能障礙操作性定義的五項基本假設:
o 現階段的功能限制必須是以典型同儕和文化的社區環境背景做考量
o 有效的評量應考量文化與語言的多樣性,以及在溝通、感官、動作與行
為因素上的差異。
o 每個人的限制通常也伴隨著優勢
o 描述限制的主要目的是為了要發展支持需求的側面圖
o 在一段持續的時間內,提供適當的個人化支持,通常智能障礙者的生活
功能會改善。(Schalock et al., 2010, p. 1)
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20. 2010 成年心智障礙者社區居住與獨立生活研討會
Slide # 14:
Cutoff Scores
(Establish the Construct’s Boundaries)
The ‘significant limitations in intellectual functioning’ criterion for a diagnosis of
ID is an IQ score that is approximately two standard deviations below the mean,
considering the standard error of measurement for the specific instruments used and
the instruments’ strengths and limitations.
The ‘significant limitations in adaptive behavior’ criterion for a diagnosis of ID is
performance that is approximately two standard deviations below the mean of either
(a) one of the following three types of adaptive behavior: conceptual, social, or
practical, or (b) an overall score on a standardized measure of conceptual, social,
and practical skills. As with the intellectual functioning criterion, the assessment
instrument’s standard error of measurement must be considered when interpreting
the individual’s obtained score.
# 14 張:
切分點
( 建立結構範疇 )
診斷智能障礙的 ‘智力功能有顯著的限制’ 這標準是 IQ 分數,大約是低於平
均值的兩個標準差,考慮所使用評量工具的測量標準誤、工具的優勢和限制。
診斷智能障礙的 ‘適應行為有顯著的限制’這標準是指以下任一至少低於平均
值二個標準差的表現:
(a)以下三個適應行為中之一:概念的、社交的、或實
用的;或(b)概念的、社交的、或實用的標準化測驗的整體分數。在智力功
能的標準下詮釋個人得分時,評量工具的測量標準誤必須加以考量。
19
21. 2010 成年心智障礙者社區居住與獨立生活研討會
Slide # 15:
Standard Error of Measurement and Confidence Interval
Any obtained score is subject to variability as a function of a number of
potential sources of error including variations in test performance, examiner’s
behavior, cooperation of the test taker, and other personal and environmental
factors.
The term standard error of measurement (SEM), which varies by test, sub-group,
and age group, is used to quantify this variability and provide the basis for
establishing a statistical confidence interval around the obtained score within
which the person’s true score falls.
From the properties of the normal curve, a range of statistical confidence (i.e.
‘confidence interval’) can be established within which the person’s true score
falls, with parameters of at least one SEM (66% probability) or parameters of
two SEM (95% probability).
# 15 張:
測量標準誤與信度區間
任何所獲得的分數通常會受到一些潛在錯誤變異性所影響,包含了測驗表
現的變異、施測者的行為、受測者的合作度與其他個人的與環境因素。
測量標準誤 (SEM)會因為測試、次團體與年齡團體而有不同, 是用來量
化變異性並在取得個人真實分數落點提供發展統計上信度區間的基礎。
從一個正常的曲線特性來看,統計信度(如‘信度區間’) 的範圍可建立在個
人真實分數的落點範圍內至少一個測量標準誤 SEM (66%機率),或是兩個
測量標準誤 SEM (95%機率)。
20
22. 2010 成年心智障礙者社區居住與獨立生活研討會
Slide # 16:
Classifying Members of the Class
Current Classification Systems
The Emergence of Multidimensional Classification Systems
# 16 張:
分 類
現行的分類系統
興起的多面向分類系統
Slide # 17:
Current Classification Systems
ICD 9-CM (Medicode, 1998)
ICD-10 (WHO, 1993)
DSM-IV (American Psychiatric Association, 2000)
# 17 張:
現有的分類系統
國際疾病分類系統 ICD 9-CM (Medicode, 1998)
國際疾病分類系統 ICD-10 (世界衛生組織, 1993)
心智疾病診斷與統計手冊 DSM-IV (美國精神科學會, 2000)
21
23. 2010 成年心智障礙者社區居住與獨立生活研討會
Slide # 18:
The Emergence of Multidimensional Classification Systems
All classification systems have as their fundamental purpose the provision of an
organized scheme for the categorization of various kinds of observations.
Classification systems are used typically for four purposes: funding, research,
services/supports, and communication about selected characteristics of persons and
their environments.
Trends moving the field towards multidimensional classification systems: (a)
grouping for reimbursement/funding on the basis of some combination and
weighting of levels of assessed support need, level of adaptive behavior, health
status, and/or contextual factors such as residential platform and geographical
location; (b) research methods that focus on multidimensional predictors of human
functioning and/or desired personal outcomes; and (c) individualized services and
supports based on the pattern and intensity of assessed support needs across the five
dimensions of human functioning (intellectual functioning, adaptive behavior,
health, participation, and context).
22
25. 2010 成年心智障礙者社區居住與獨立生活研討會
Slide # 19:
Exemplary Components of a Multidimensional Classification System
__________________________________________________________________________
Dimension Exemplary Measures Classification Scheme
Intellectual abilities Individually administered IQ tests IQ ranges or levels
Adaptive behavior Adaptive behavior scales Adaptive behavior levels
Health Health and wellness inventories Health status
Mental health measures Mental health status
Etiologic assessment Risk factors
Etiology groupings
Participation Community integration scales Degree of community integration
Community involvement scales Degree of community
involvement
Measures of social relationships Level of social interactions
Measures of home life Level of in-home activities
Context Environmental assessments Environmental status
(physical, social, attitudinal)
Personal assessments Personal status
(motivation, coping styles,
learning styles, lifestyles)
Supports Support need scales Level of needed support
Functional behavior assessment Pattern of needed supports
__________________________________________________________________________
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27. 2010 成年心智障礙者社區居住與獨立生活研討會
Slide # 20:
Focus of Education and Habilitation Services
Multidimensional Model of Human Functioning
Aligning Clinical Functions
Systems of Supports
Public Policy Outcomes
# 20 張:
教育與康復服務的焦點
人體功能的多面向模式
統合臨床功能
支持系統
公共政策的成果
Slide # 21:
Please insert Figure 1 here
# 21 張:
插入圖一
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28. 2010 成年心智障礙者社區居住與獨立生活研討會
I.INTELLECTUAL
ABILITIES
II. ADAPTIVE
BEHAVIOR
III. HEALTH Human
SUPPORT
Functioning
IV. PRTICIPATION
V. CONTEXT
Figure 1. Conceptual Framework of Human Functioning
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29. 2010 成年心智障礙者社區居住與獨立生活研討會
Slide # 22:
Multidimensionality of Human Functioning
Intellectual abilities: general mental capability that includes reasoning, planning,
solving problems, thinking abstractly, comprehending complex ideas, learning
quickly, and learning from experience
Adaptive behavior: the collection of conceptual, social, and practical skills that have
been learned and are performed by people in their everyday lives
Health: a state of complete physical, mental, and social well-being
Participation: the performance of people in actual activities in social life domains
and is related to the functioning of the individual in society; participation refers to
roles and interactions in the areas of home living, work, education, leisure, spiritual,
and cultural activities.
Context: the interrelated conditions within which people live their everyday lives;
context includes environmental (e.g. physical, social, attitudinal) and personal (e.g.
motivation, coping styles, learning styles, lifestyles) factors that represent the
complete background of an individual’s life.
# 22 張:
人體功能的多面向性
智力能力:一般的心智能力包含了推理、計畫、解決問題、抽象思考、複雜概
念的理解、快速學習與從經驗中學習
適應行為:人們在每日生活中學習與表現而來的概念性、社交的與實用的技能
健康: 生理、心理與社會福祉的完整狀態
參與:人們在社交生活領域中實際活動的表現,而且是與個人在社會的功能相
關;參與是指在居家生活、工作、教育、休閒、心靈上與文化活動方面的角色
與互動 。
環境背景:人們在過其日常生活的相互關連狀態;環境背景包含了環境上的
(如生理、社會、態度) 及個人的因素 (如動機、應對方式、學習方式、生活方
式),呈現出一個人生活的完整背景。
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30. 2010 成年心智障礙者社區居住與獨立生活研討會
Slide # 23:
Aligning Clinical Functions
(Framework for Assessment)
Assessment Function Specific Purpose Examples of Measures, Tools
And Assessment Methods
Diagnosis Establishes presence of ID IQ tests
Establishes Eligibility for: AB scales
-Services Age of onset
-Benefits
-Legal protections
Classification Needed supports Support intensity scales
Research Levels of IQ/AB
Reimbursement/funding Environmental assessments
Selected characteristics Etiology risk factors
Health measures
Planning Supports Enhance human functioning Person-centered planning
Enhance personal outcomes Functional behavior assess.
Individualized plans
Self-directed plans
Ecological inventory
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32. 2010 成年心智障礙者社區居住與獨立生活研討會
Slide # 24:
Systems of Supports
Definition: A systems of supports is the planned and integrated use of individualized
support strategies and resources that encompass the multiple aspects of human
performance in multiple settings. A systems of supports model provides a structure
for the organization and enhancement of human performance elements that are
interdependent and cumulative.
Human Performance Technology Elements: policies and practices, incentives,
cognitive supports (e.g. assistive technology), tools (e.g.prosthetics), skills and
knowledge, inherent ability, environmental accommodation
Quality of Life Core Domains: personal development, self-determination,
interpersonal relations, social inclusion, rights, emotional well-being, physical
well-being, material well-being
# 24 張:
支持系統
定義:支持系統是指有計畫且統合的使用個別化支持策略與資源,包含了在多
重環境下個體表現的多重面向。 支持系統模式提供組織架構與提升互相依存
與累積的個體表現要素。
個體表現科技要素(Human Performance Technology Elements):政策與實作、獎
勵、認知上的支持 (如科技輔具)、工具 (如義肢)、技能與知識、 固有的能力、
環境調整
生活品質核心領域:個人發展、自我決策、人際關係、社會融合、權利、情緒
福祉、生理福祉、物質福祉
31
33. 2010 成年心智障礙者社區居住與獨立生活研討會
Slide # 25:
Public Policy Outcomes
Person-Referenced Outcome Domains
Rights Personal Development Self Determination Physical Well-Being
Inclusion Emotional Well-Being Material Well-Being Participation
Family-Referenced Outcome Domains
Family Interaction Emotional Well-Being Personal Development
Parenting Physical Well-Being Financial Well-Being
Community/Civic Involvement Disability-Related Supports
Societal-Referenced Outcomes
Socioeconomic Position Health Subjective Well-Being
# 25 張:
公共政策的成果
以個人為參照的成果領域
權利 個人發展 自我決策 生理福祉
融合 情緒福祉 物質福祉 參與
以家庭為參照的成果領域
家庭互動 情緒福祉 個人發展
育兒教養 生理福祉 財務福祉
社區/公民參與 障礙相關的支持
以社會為參照的成果
社經地位 健康 主觀的福祉
32
34. 2010 成年心智障礙者社區居住與獨立生活研討會
Slide # 26:
Our language of thought and our mental models not only explain the past and present,
but they also frame the future.
# 26 張:
我們思考的語言及我們的心智模式不只解釋過去與現在,同時也架構著未來。
33
35. 2010 成年心智障礙者社區居住與獨立生活研討會
Slide # 1:
Part II: Redefining ID/DD Organizations
Component # 1: Understanding the Significant Challenges Facing ID/DD
Organizations
Component # 2: Using Effective Leadership Strategies
Component # 3: Basing Change on a Person-Centered Conceptual and
Measurement Framework
Component # 4: Employing Outcome-Focused Quality Strategies
Component # 5: Implementing a Performance-Based Reporting, Monitoring,
Evaluation, and Quality Improvement System
# 1 張:
第二部分:重新界定智能及發展障礙組織
要素# 1:了解智能及發展障礙組織面臨的重大挑戰
要素 # 2:使用有效的領導策略
要素# 3:以個人為中心的概念與衡量架構作為改變的基礎
要素# 4:運用聚焦在成果的品質策略
要素# 5:執行以成就表現為基礎的報告、監督、評估與品質改善系統
34
36. 2010 成年心智障礙者社區居住與獨立生活研討會
Slide # 2:
Component # 1: Understanding the Significant Challenges Facing
Organizations
Dwindling resources with increasing need for services and supports
Challenges involved in changing weighty legacy policies and practices
Structural changes from top-down hierarchies built along vertical lines of authority
to organizations built along horizontal lines of action
Emergence of networks of public/private service provision entities
Increasing social and political expectations and requirements for ID/DD
organizations and systems to be:
o Effective in terms of outcomes
o Efficient in terms of resource utilization
o Evidence based
# 2 張:
要素# 1:了解智能及發展障礙組織面臨的重大挑戰
服務與支持需求增加而資源變少
改變沉重遺產政策與實踐所面對的挑戰
從由上而下垂直式權威到行動式水平組織結構上的改變
公/私立服務提供主體網絡的興起
逐漸對智能與發展障礙組織及系統在社會與政治上增加期待與要求:
o 在成果方面有效
o 在資源使用方面具效能
o 證據為本位
35
37. 2010 成年心智障礙者社區居住與獨立生活研討會
Slide # 3:
Successfully addressing these challenges is causing
ID/DD organizations to implement four organization change strategies.
# 3 張:
成功的解決這些挑戰造成
智能與發展障礙組織採用四項組織改變策略
36
38. 2010 成年心智障礙者社區居住與獨立生活研討會
Slide # 4:
Component # 2: Using Effective Leadership Strategies
Emphasis on what leaders do rather than who they are
The first task of leadership is to change mind sets (“mental models”)
Redefining organizations requires leadership at all levels of an organization
Leadership involves
o Mentoring and directing
o Coaching and instructing
o Inspiring and empowering
o Collaborating and partnering
Leadership requires perseverance since a history of perseverance is frequently the
best predictor of success
# 4 張:
要素 # 2:使用有效的領導策略
強調領導人做什麼而非是誰
領導的第一項任務就是改變心智 (“心智模式”)
重新定義組織每個層級都需要領導
領導包含了
o 導師與指引
o 教練與指導
o 激勵與授權
o 合作與夥伴
領導需要毅力,因為毅力常是成功的最好預測指標
37
39. 2010 成年心智障礙者社區居住與獨立生活研討會
Slide # 5:
Component # 3: Basing Change on a Person-Centered Conceptual and
Measurement Framework such as Quality of Life
The Power of the Quality of Life Concept
Quality of Life Conceptual and Measurement Framework
Quality of Life Application Principles
# 5 張:
要素# 3:以個人為中心的概念與衡量架構作為改變的基礎
生活品質概念的力量
生活品質概念與衡量架構
生活品質應用原則
38
40. 2010 成年心智障礙者社區居住與獨立生活研討會
Slide # 6:
The Power of the Quality of Life Concept
Common language (‘sensitizing notion’; what is important in peoples’ lives)
Vehicle to implement the paradigm shift in public policies and services
o Ecological model of disability
o Multidimensionality of human functioning
o Subjective well-being
o Person-centered planning and the supports paradigm
o Consumer movement (self-determination, inclusion, equity)
Basis of policy development and evaluation
# 6 張:
生活品質概念的力量
共同的語言(‘促進感應的概念’; 對人們的生活什麼是重要的)
在公共政策與服務上執行典範轉移的媒介
o 障礙的生態模式
o 人類功能的多重面向(Multidimensionality of human functioning)
o 主觀福祉
o 以個人為中心的計畫與支持典範
o 消費者運動(自我決策、融合、平等)
政策發展與評估的基礎
39
41. 2010 成年心智障礙者社區居住與獨立生活研討會
Slide # 7:
Quality of Life Conceptual and Measurement Framework
Factor Domains Culturally Sensitive Indicators
Independence Personal Development Activities of daily living
Self-Determination Choices, decisions, personal goals
Social Participation Interpersonal Relations Social network, friendships
Social Inclusion Community involvement
Rights Human and legal
Well-Being Emotional Well-Being Safety and Security
Physical Well-Being Health and nutrition status
Material Well-Being Financial status, employment
Indicators are quality of life-related perceptions, behaviors, and conditions that define
operationally each quality of life domain. Psychometrically robust indicator items are used
to assess either the person’s perceived well-being (‘self report’) or an objective indication of
the person’s life experiences and circumstances (‘direct observation’).
40
43. 2010 成年心智障礙者社區居住與獨立生活研討會
Slide # 8:
Quality of Life (QOL) Application Principles
QOL enhances well-being within cultural contexts
QOL application should be evidence-based
QOL domains should provide the basis for a multi-dimensional approach to the
provision of individualized supports
QOL conceptualization and measurement principles should have a prominent place
in professional education and training
QOL application should be multi-faceted and encompasses all environments,
levels of disability, and dimensions of human functioning
# 8 張:
生活品質 (QOL) 應用原則
生活品質在文化的背景脈絡下提升福祉
生活品質的應用應以證據為基礎
生活品質領域應是多重面向的方式,用來作為提供個別化支持的基礎
生活品質概念與衡量原則應在專業教育或培訓過程中佔有重要地位
生活品質應用應是多方面的,並包含了所有環境、各種障礙程度以及人類功能
面向(dimensions of human functioning)
42
44. 2010 成年心智障礙者社區居住與獨立生活研討會
Slide # 9:
Component # 4: Employing Outcome-Focused Quality Strategies
High Performance Teams
Person-Centered Planning
A Systems of Supports
Support Staff Facilitative Techniques
Program Options
Consumer Involvement
# 9 張:
要素# 4:運用聚焦在成果的品質策略
高成就表現的團隊
以個人為中心的計畫
支持的系統
支持工作人員促進的技術
方案的選擇
消費者參與
43
45. 2010 成年心智障礙者社區居住與獨立生活研討會
Slide # 10:
Best Practices and Evidence-Based Practices
Best Practices: Practices based on professional ethics, professional standards, and
informed clinical judgment
Evidence-Based Practices: Practices based on current best evidence that is obtained
from credible sources that used reliable and valid methods and based on a clearly
articulated and empirically supported theory or rationale
# 10 張:
最佳實作與以證據為基礎的實踐
最佳實作: 以專業倫理、專業標準與被告知的臨床判斷為實踐的基礎
以證據為基礎的實踐:實踐是從使用具有信效度方法的可靠消息來源,所獲得
的現行最佳證據為基礎 ,並且是以闡述明確及有實證支持的理論或理由為基
石
44
46. 2010 成年心智障礙者社區居住與獨立生活研討會
Slide # 11:
High Performance Teams Indicators**
Changing mind sets (“the first task of leadership”)
Setting high goals (“continuously raising the bar”)
Looking for ways to improve effectiveness and efficiency (“quality improvement”)
Re-evaluating the effect of what they do (‘effectiveness and efficiency analyses”)
Involving key stakeholders in the development of policies and the implementation
of practices
Using left to right thinking (“beginning with the end in mind”)
Creating a learning organization culture based on best practices, evidence-based
practices, cross-functional teams, self-evaluation, joint accountability, and risk
taking (“learning organization”)
Establishing protocols (e.g. ISP, performance measurement, conflict resolution,
team meetings (“us-accountability”)
Developing a supportive performance management system (“logic program model”)
Demonstrating a history of perseverance (“the best predictor of success”)
**Evidence-based practice (empirical support)
# 11 張:
高成就表現團隊指標**
改變的心智模式 (“領導的第一個任務”)
設定高目標(“不斷提高門檻”)
尋求改善效率與效益的方法 (“品質改善”)
重新評估執行的成效 (‘效用與效率分析”)
在發展政策與執行時有重要利害關係人的參與
運用由左到右的思考 (“銘記先從結果開始”)
以最佳實作、證據為基礎的實踐、跨職能的團隊、共同的責任與勇於冒險為基
礎,創造學習型組織的文化 (“學習型組織”)
建構議定書 (如 ISP、表現衡量、衝突解決、團隊會議(“我們的-責任
us-accountability”)
發展支持性的成就表現管理系統(“邏輯方案模式”)
展現毅力(“成功的最佳預測指標”)
**證據為基礎的實踐 (經驗的支持)
45
47. 2010 成年心智障礙者社區居住與獨立生活研討會
Slide # 12:
Person-Centered Planning Indicators**
Involvement of the person and his/her family
Futures planning
Focus on social networks
Focus on community involvement
Focus on choice-making
Focus on reducing challenging behaviors (if relevant)
** Evidence-based practice (empirical support)
# 12 張:
以個人為中心的指標**
有個人與其家庭的參與
對未來做規畫
著重在社會網絡
著重社區參與
聚焦在選擇-做決定
聚焦在降低挑戰性行為(如果相關)
**證據為基礎的實踐 (經驗的支持)
46
48. 2010 成年心智障礙者社區居住與獨立生活研討會
Slide # 13:
A Systems of Supports Indicators
Standardized assessment of support needs*
Alignment of supports provided to the person’s assessed support needs
Individual Support Plan components
o Identified desired life experiences and goals*
o Individualized support strategies
Incentives (e.g. behavioral contract)**
Cognitive supports (e.g. AT/IT)**
Environmental accommodation**
Skills/knowledge**
Positive behavior supports**
Monitoring of support objectives*
Evaluation of impact of supports*
*Best practice
**Evidence-based practice (empirical support)
# 13 張:
具支持系統的指標
標準化的衡量支持需求*
將提供給個人的支持與所評估的支持需求統整校正
個別化支持計畫的要素
o 界定個人所欲的生活經驗與目標*
o 個別化支持策略
獎勵(如 行為契約)**
認知的支持(如 AT/IT)**
環境調整**
技能/知識**
正向行為支持**
監督支持目標 *
評估支持的影響*
*最佳實作
**證據為基礎的實踐 (經驗的支持)
47
49. 2010 成年心智障礙者社區居住與獨立生活研討會
Slide # 14:
Support Staff Facilitative Indicators**
Communication support
Personal use of AT
Fostering consumer empowerment
Ensuring a sense of basic security
** Evidence-based practice (empirical support)
# 14 張:
支持工作人員促進的指標**
溝通支持
個人使用支持性輔具 AT
消費者賦權的福祉
確保基本安全感
**證據為基礎的實踐 (經驗的支持)
48
50. 2010 成年心智障礙者社區居住與獨立生活研討會
Slide # 15:
Program Options Indicators
Community living alternatives**
Employment options**
Inclusive education*
In-home supports*
Transportation**
*Best practice
**Evidence-based practice (empirical support)
# 15 張:
方案選擇權的指標
社區居住的替代性方案**
就業的選擇**
融合的教育*
居家支持*
交通**
*最佳實作
**證據為基礎的實踐 (經驗的支持)
49
51. 2010 成年心智障礙者社區居住與獨立生活研討會
Slide # 16:
Consumer Involvement Indicators*
Self-directed ISP
Involvement in research design and data collection
Involvement in developing organization policy and implementing organization
practices
Membership on boards and committees
Availability of self-advocacy group(s)
# 16 張:
消費者參與的指標*
自我主導的 ISP
參與研究設計與數據收集
參與發展組織政策與組織實踐之執行
是董事會與委員會的一員
自我倡議組織的可用性
Slide # 17:
Component # 5: Implementing a Performance-Based Reporting,
Monitoring, Evaluation, and Quality Improvement System
# 17 張:
要素# 5:執行以成就表現為基礎的報告、監督、評估與品質改善系統
50
52. 2010 成年心智障礙者社區居住與獨立生活研討會
Slide # 18:
Framework for a Performance-Based Reporting, Monitoring,
Evaluation, and Quality Improvement System
Purposes:
To enhance personal outcomes and organization outputs
To provide data that serve as a basis for quality improvement
To enhance an organization’s effectiveness, efficiency, and sustainability
Characteristics:
Based on best practices and evidence-based practices
Data based
Outcome focused
Components:
Personal Outcomes
Organization Outputs
Uses:
Reporting
Monitoring
Evaluation
Quality Improvement
51
54. 2010 成年心智障礙者社區居住與獨立生活研討會
Slide # 19:
Operational Definitions: Components
Personal Outcomes: The benefits to program recipients that are the result, directly or
indirectly, of program activities, services, and supports
Organization Outputs: The products that result from the resources a program uses to
achieve its goals and the actions and/or processes implemented by an organization
to produce these products
Quality Strategies: The techniques that organizations use to enhance personal
outcomes and organization outputs
# 19 張:
操作性定義: 要素
個人成果: 方案服務對象的獲益,來自於方案活動、服務與支持直接或間接
的結果。
組織產出: 方案為了達成目標使用資源所獲得的產出,以及組織為了這些產
出採取的行動與/或過程
品質策略:組織為了提升個人成果與組織產出所使用的技術
53
55. 2010 成年心智障礙者社區居住與獨立生活研討會
Slide # 20:
General Uses of a Performance-Based Reporting, Monitoring,
Evaluation, and Quality Improvement System
Reporting: Sharing actual data related to personal outcomes and organization
outputs
Monitoring: Assessing whether best practices and evidence-based practices are
being used as a basis for making:
o Clinical decisions about the interventions, services, and supports that
consumers receive in specific situations
o Managerial decisions about the strategies used by the organization to
increase its effectiveness and efficiency
Evaluation: Relating quality strategies to personal outcomes and organization
outputs in order to provide data for Quality Improvement
Quality Improvement: Using evaluation data to enhance an organization’s
effectiveness, efficiency, and sustainability
# 20 張:
以成就表現為本位的報告、監督、與品質改善系統的一般用途
報告:分享與個人成果和組織產生相關之實際數據
監督:評估最佳實作或以證據為本位實作是否有用來作為下列之基礎:
o 消費者在特定情況下所得到的介入、服務與支持之臨床決定
o 組織為了增加其效益與效率所使用策略之管理決定
評估:為了提供品質改善所需之數據,跟個人成果及組織產出相關之品質策略
品質改善:使用評估數據來提升組織的效益、效率與持續性
54
56. 2010 成年心智障礙者社區居住與獨立生活研討會
Slide # 21:
Component Indicators
Personal Outcome Indicators
Multidimensional conceptual and measurement framework (e.g. 8-factor quality of
life model)
Reliable and valid assessment instrument(s) and procedures that result in the
assessment of personal outcomes (e.g. Personal Outcomes Scale-The Netherlands
and Belgium; GENCAT (Spain); Ask Me! Survey (USA); Personal Outcomes Index
(Alberta, Canada)
Reporting format (e.g. raw scores, percentiles, standard scores)
Organization Output Indicators
Effort measures (e.g. units of service/support; number of clients placed into more
independent, productive, and community integrated environments)
Efficiency measures (e.g. cost per unit; indirect/overhead cost rate; percent of
budget allocated to client-referenced supports; number of networks/partners)
Staff-related measures (e.g. staff development activities; percent of staff registered;
employment duration; tenure; job satisfaction)
Program options (e.g. employment, community living alternatives, educational
opportunities)
Network indicators (e.g. partners/interagency agreements; consortia membership;
data sharing; eligibility/case management)
55
58. 2010 成年心智障礙者社區居住與獨立生活研討會
Slide # 22:
Exemplary Uses of a Performance-Based Reporting, Monitoring,
Evaluation and Quality Improvement System
Reporting
Monitoring
Evaluation
Quality Improvement
# 22 張:
以成就表現為本位的報告、監督、與品質改善系統的使用範例
報告
監督
評估
品質改善
57
59. 2010 成年心智障礙者社區居住與獨立生活研討會
Slide # 23:
Exemplary Use: Reporting Personal Outcomes
(Personal Profile)
Personal Outcome Domain Exemplar Reporting Metric
Personal Development Raw scores (current), change scores (change
over time), percentiles, standard scores
Self-Determination
Interpersonal Relations “
Social Inclusion “
Rights “
Emotional Well-Being “
Physical Well-Being “
Material Well-Being “
# 23 張:
使用的範例: 報告個人成果
(個人簡介)
個人成果領域 範例報告方式
個人發展 原始分數(現在)、改變分數(隨著時間的改變)、
百分位數、標準分數
自我決策 “
人際關係 “
社會融合 “
權利 “
情緒福祉 “
生理福祉 “
物質福祉 “
58
60. 2010 成年心智障礙者社區居住與獨立生活研討會
Slide # 24:
Exemplary Use: Reporting Organization Outputs
(Provider Profile)
Measure Average Score/Measure
Effort measures (e.g. units of service)
Efficiency measures (e.g. unit cost)
Staff-related indices (e.g. hours of
staff development/in-service training)
Program options (e.g. number of program
options)
Networking index (e.g. number of
interagency agreements)
# 24 張:
使用的範例:報告組織產出
(提供者簡介)
衡量 平均分數 /衡量
成就的衡量 (例如:服務單位數)
效率衡量 (例如:單位花費)
工作人員相關指標(例如:員工發展時數
/在職訓練)
方案選擇權 (例如:方案選擇數)
網絡指標(例如:機構間協議的數量)
59
61. 2010 成年心智障礙者社區居住與獨立生活研討會
Slide # 25:
Exemplary Use: Monitoring
Quality Strategy Exemplary Indicators* Evidence of Indicator
Yes No
High Performance Team Self evaluation
Right to left thinking
Learning organization culture
Person-Centered Planning Consumer involvement
Futures planning
Personal outcome indicators
Systems of Support Standardized assessment of support needs
Individual Support Plan
Monitoring of support objectives
Evaluation of impact of supports
Support Staff Facilitation Communication support
Assist with personal use of AT
Program Options Community living alternatives
Employment options
Inclusive education opportunities
Consumer Involvement Self-directed ISP
Involvement in research/management
Self advocacy group opportunity
*Based on best practices and/or evidence-based practices
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63. 2010 成年心智障礙者社區居住與獨立生活研討會
Slide # 26:
Exemplary Use: Evaluation
(Overview)
Evaluation: Relating quality strategies to personal outcomes and organization outputs
Requirements: Systematically collecting and analyzing data (“evaluation capability”)
Purpose: To provide data for Quality Improvement that involves implementing action
strategies based on best practices and/or evidence-based practices
# 26 張:
使用的範例:評估
( 綜述 )
評估: 跟個人成果相關的品質策略及組織產出
要件: 系統化的收集與分析數據(“評估的能力”)
目的:提供品質改善所需的數據,包含以最佳實作及/或證據為實踐基礎的行動策略
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64. 2010 成年心智障礙者社區居住與獨立生活研討會
Slide # 27:
An Ecological Approach to Quality Improvement
Evidence-Base: Multivariate research studies or literature review
Summary statements regarding the relationship between predictor clusters and
personal outcomes (literature based):
o Consumer characteristics: adaptive behavior level, intellectual functioning
level, and better physical and mental health are positively related to
personal outcomes
o Service-delivery factors: participation opportunities, support staff strategies
(e.g. facilitative assistance), support staff characteristics (e.g. teamwork and
organized staff management principles), and job satisfaction are positively
related to personal outcomes
o Organization-based factors: positive personal outcomes are related to
smaller organizations, more normalized community living arrangements,
the offering of supported employment programs, and the perceived
availability of transportation
# 27 張:
以生態的方式做品質改善
以證據為基礎:多變數研究或文獻回顧
將預測指標群與個人成果間的關係做摘要陳述(以文獻為基礎):
o 顧客特性:適應行為的層級、智力功能層級、以及與個人成果正相關較
好的生理與心理健康
o 服務輸送因素:參與的機會、支持人員的策略(如促進的支持)、支持人
員的特質 (如團隊工作與組織人員管理原則)、及與個人成果正相關的
工作滿意度
o 組織為基礎的要素:正向個人成果與較小型組織、較正常化的社區居住
安排、提供支持性就業方案、 與交通可用性的覺知有關
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65. 2010 成年心智障礙者社區居住與獨立生活研討會
Slide # 28:
Quality Improvement Strategies
(Based on results presented in Slide # 27)
Individual level: Reduce mismatches between individual’s capabilities and his/her
environmental demands by a systems of supports (e.g. assistive technology,
prosthetics, skill training, health promotion, positive behavior supports)
Agency level: (a) realign staff functions to focus on the provision of individualized
supports; (b) increase job satisfaction by increasing personal involvement, control,
and decision making; (c) implement high performance teams; and (d) employ the
principles of a learning organization
Systems level: transition to smaller facilities and more normalized community
living arrangements, provide supported employment opportunities, and increase the
availability of transportation/community access
# 28 張:
品質改善策略
(以# 27 張簡報的結果為基礎)
個人層級:透過支持系統降低個人能力與其環境需求間的錯誤配對 (如支持性
科技輔具、義肢、技能訓練、健康促進、正向行為支持)
組織層級: (a) 重新統合工作人員的功能聚焦在提供個別化支持、(b) 藉由增
加個人的參與、控制與作決定來增加對工作的滿意度、 (c)實施高成就表現的
團隊,及(d) 採用學習型組織的原則
系統層級:轉型成為更小型的單位與更正常化的社區居住安排、提供支持性就
業機會,以及增加交通/ 社區設施使用的可行性
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66. 2010 成年心智障礙者社區居住與獨立生活研討會
Slide # 29:
“At the end of the day, organizations stand or fall
on what happens at the moment of customer interface.”
# 29 張:
“最後,組織存在與否取決於與顧客接口的當下。”
Slide # 30:
The Sustainability Factor: Balancing
Effectiveness and Efficiency
Idealism and Realism
Personal Outcomes, Organization Outputs, and Quality Strategies
Public and Private Networks
# 30 張:
持續性的要素: 取得平衡
有效性與效率
理想主義與現實主義
個人成果、組織產出 、以及品質策略
公私立網絡
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67. 2010 成年心智障礙者社區居住與獨立生活研討會
補充資料
Systems Level Input Throughput Outcome/Output
Assessed Support
Needs
Individual
Individual Personal Goals and Support Plan Personal Outcomes
Desires
Resources
• Tacit and
Explicit
Knowledge Organization
Organization A System of Supports
• Time Outputs
• Social and
Financial Capital
• Technology
Figure 1. A Systems Approach to Performance Management
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