Supporting People with Intellectual Disability to Live Good Lives in the Community – the Role of Group Homes Past- Present and Future.

Professor Christine Bigby

Living with Disability Research Group

La Trobe University

Supporting People with Intellectual Disability to Live Good Lives in the Community – the Role of Group Homes Past- Present and Future.

Professor Christine Bigby

Living with Disability Research Group

La Trobe University

& Dr Julie Beadle Brown, Tizard Centre, University of Kent

支持智能障礙者在社區過個好生活—團體家庭過去、現在與未來的角色

Professor Christine Bigby

Living with Disability Research Group

La Trobe University Supporting People with Intellectual Disability to Live Good Lives in the Community – the Role of Group Homes Past- Present and Future.

Professor Christine Bigby

Living with Disability Research Group

La Trobe University

& Dr Julie Beadle Brown, Tizard Centre, University of Kent

Outline

Background – group homes as part of deinstitutionalisation

Evidence outcomes and staff practice -group homes vis institutions

Evidence group homes and other models

Evidence current situation in Australia – outcomes, staff practices- culture

Understanding reasons for variability and poor performance

What makes a difference - improving outcomes

大綱

背景 – 團體家庭是去機構教養化的一部分 實證成果工作人員的實作 –團體家庭 v.s. 機構

實證團體家庭與其他模式

澳洲現況 – 成果、工作人員實作 - 文化

了解差異性與表現不佳的原因

可以有所作為的是什麼 – 改善成果

Early forms of accommodation - InstitutionsDesign• large congregations of people • physically and socially segregated from the wider society.

Staff Working practices • depersonalisation (removal signs and symbols of individuality and

humanity)• rigidity of routine (fixed timetables irrespective of preferences or needs)• block treatment (processing people in groups without privacy or

individuality) • social distance (symbolising the different status of staff and residents) (King,

Raynes and Tizard, 1971).

Outcomes• social exclusion – abuse – loss of individuality/humanity - lack choice,

personal development (Blatt, 1966)

Condemnation of institutions from 1970s driven by scandal and ideology of normalisation

早期的居住型態 – 教養機構在設計上• 一大群人 • 物理上與社交上都被隔離在廣大社會之外在工作人員的實作上• 人格解體 depersonalisation ( 除去個別性與人性的符號與象徵 )• 僵化的例行作息 ( 不管喜好或需求固定的時間表 )• 集體式的治療 ( 在團體中進行不考量隱私與個別性 )• 社會疏離 social distance ( 工作人員與住民採用不同的象徵 ) (King, Raynes and Tizard,

1971).

成果• 社會隔離– 虐待 – 喪失個別性 / 人道 – 缺乏選擇 , 個人發展 (Blatt, 1966)

• 1970 年代因為醜聞與正常化思想開始譴責教養機構

Deinstitutionlisation“….one common factor is the embrace of the concept of normalisation and the rejection of segregation of people with intellectual disabilities from the rest of society. (Bradley, 1994)

Deinstitutionlisation more than closure of institutions Requires both significant individualised support as well as societal change

(Bigby & Fyffe, 2006)

… The success or failure of deinstitutionalization will rest with our ability, collectively, to prepare our communities to accept persons with intellectual disabilities as valued and contributing members of our society. (Gallant, 1994, cited Bigby & Fyffe, 2006)

Main strategy - accommodation support - little initial attention to community change

> still more than half of all disability expenditure on supported accommodation (AIHW, 2012)

Australia

– 1-6 bed supported accommodation (group homes)

– larger hostel facilities many now closed

UK

– small supported accommodation

– campus cluster style accommodation small units on same site many now closed

– some intentional villages

– growth of supported living options

去機構教養化“…. 其中最主要的因素是接納正常化概念，以及反對將智能障礙者隔離在社會之外 . (Bradley, 1994)

去機構化不只是把機構關掉而已 同時需要重要的個別化支持以及社會變革 (Bigby & Fyffe, 2006)

… 去機構化的成功或失敗將取決於我們的能力 , 共同努力讓我們的社區能準備好去接納智能障礙者 , 並視其為有價值且對我們社會有貢獻的成員 . (Gallant, 1994, cited Bigby & Fyffe, 2006)

主要策略 – 居住支持 - 對社區改變之初的小小的關注> 現在所有障礙支出超過一半以上花是在支持性居住 (AIHW, 2012)

澳洲

– 1-6 床的支持性居住 ( 團體家庭 )

– 許多大型的住宿機構現在都關了

英國

– 小的支持性居住

– 許多在同一地點的小型集合式居住已經關了– 有些公社 ( intentional villages)

– 支持性居住的選擇有成長

Research Findings: DeinstitutionalisationBetter outcomes

‘There can be no doubt, in general, that people with an intellectual disability benefited from deinstitutionalisation’ (Mansell & Ericsson, 1996).

– More choice making opportunities

– Larger social networks and more friends

– Access to mainstream community facilities

– Participation in community life

– Chances to develop and maintain skills

– More contact from staff and more engagement in ongoing activities

– A better material standard of living

– Increased acceptance from the community.

Less clear advantages -challenging behavior, psychotropic medication, health

(Emerson & Hatton, 1996 & Kozma, Mansell & Beadle Brown, 2009)

Victorian studies similar findings (Bigby, 2006; Bigby, Cooper & Reid; 2012, Clement & Bigby, 2010)

Better Outcomes Possible for Everyone

> Early UK demonstration programs - community living is possible for everyone – even people with severe challenging behavior and high complex support needs (Mansell et al., 1987)

研究發現：去機構教養化較好的成果

‘一般來說 , 無庸置疑的智能障礙者可從去機構化中受益’ (Mansell & Ericsson, 1996).

– 更多做選擇的機會

– 更廣大的社會網絡與更多朋友

– 有管道接觸主流的社區設施

– 參與社區生活

– 有機會發展與維持技能

– 有更多工作人員的接觸以及更多機會從事正在進行的活動

– 更好的物質生活水平

– 社區接納增加

好處較不明顯的 – 挑戰性行為 , 精神用藥 , 健康

(Emerson & Hatton, 1996 & Kozma, Mansell & Beadle Brown, 2009)

維多利亞研究有類似的發現 (Bigby, 2006; Bigby, Cooper & Reid; 2012, Clement & Bigby, 2010)

每個人都可能有較好的成果

英國的示範方案 - 社區居住對每個人都是可能的 – 即使是重度挑戰性行為與高複雜支持需求者 (Mansell et al., 1987)

Research Findings: VariabilityVariation

Best institutions better than the worse supported accommodation (staffed individual or small group)

Best supported accommodation exceeds best institutions

Variability most apparent on QoL domains of community participation, social networks and self determination

People with more severe intellectual disability fare worse

Closing institutions does not guarantee against the re-emergence of “institutional” practices or ensure improved client outcomes (Felce, 1996; Mansell & Ericsson, 1996).

Low engagement of clients in meaningful

activities has persisted in community houses (Mansell, 1996)

Is the model flawed or the implementation?

Community living requires careful and

sustained implementation and monitoring strategies. clip

研究發現： 差異性差異

最好的教養機構都比最差的支持性居住好

最好的支持性居住遠超過最好的教養機構 在生活品質領域差異最明顯的是社區參與 , 社會網絡以及自我決策

越重度的智能障礙者的成果越糟

關掉教養院並不保證不會再有”教養式”的作法 , 或是能確保改善服務使用者的成果 (Felce, 1996; Mansell & Ericsson, 1996).

在社區的居住房舍裡 ,服務使用者從事有意義的活動仍低 (Mansell, 1996)

是這個模式或是它的運作執行有瑕疵呢 ?

社區居住需要謹慎並持續的執行及監督的策略 . clip

Variability in performance in residential settings in England and Wales for engagement in meaningful activity

Mansell (2006)

Mean = 13.7% Range = 2 - 23%

Mean = 24.7% Range = 6 - 54%

Mean = 47.7% Range = 8 - 74%

Victorian study 6 organisations – 33 houses (Mansell, Beadle-Brown, Bigby, in press)

Mean engagement 51% Range 0-100

在英格蘭與威爾斯的不同居住型態從事有意義活動的表現差異

Mansell (2006)

平均值 = 13.7% 範圍 = 2 - 23%

平均值 = 24.7% 範圍 = 6 - 54%

平均值 = 47.7% 範圍 = 8 - 74%

維多利亞對 6 個組織的研究 – 33 家 (Mansell, Beadle-Brown, Bigby, in press)

活動從事的平均值 51% 範圍 0-100

大型教養院

有工作人員的居住

小型教養院

住民從事活動的時間比例

Post Deinstitutionlisation Research Why variability – why best institutions cannot match

Degree of impairment major predictor

Necessary but Not Sufficient Conditions –

Resources - below a critical threshold will affect outcomes – there are no cheap good quality services (Emerson & Hatton, 1994, Mansell et al., 2007)

-once adequate marginal or decreasing returns(Mansell, Felce, Knock, 1982)

Design

• Size 1-6 and then stepped rather than gradual (Tossebro, 1995)

• Type ordinary and dispersed (Emerson et al.; Janssen et al., 1999; Mansell & Beadle Brown, 2009)

• small body of literature - Some definitions•Dispersed – small group homes 1-6 ( housing + support) or supported living 1-3 (separate housing and support)

•Cluster – ‘number of living units forming a separate community from the surrounding population’

• residential campus’s often institutional sites

•cluster housing – separate housing same site, or cul de sac

•intentional villages – separate site, shared facilities – unpaid life sharing – strong ideology (Camphill) some failed attempts with staff in OZ Redlands

去機構教養化之後的研究為什麼有差異 – 為什麼最好的教養院不能符合障礙程度是主要的預測指標

必要但非足夠的狀況 –

資源 – 在一個關鑑門檻下將會影響成果 –沒有便宜又有品質的服務 (Emerson & Hatton, 1994, Mansell et

al., 2007)

- 一旦到適當點，邊際或遞減效應發生 (Mansell, Felce, Knock, 1982)

設計• 大小： 1-6, 超過是大幅度的下滑 (Tossebro, 1995)

• 型態：一般且分散 (Emerson et al.; Janssen et al., 1999; Mansell & Beadle Brown, 2009)

• 一些文獻 – 定義• 分散 – 小型團體家庭 1-6 (房舍 + 支持 ) 或支持性居住 1-3 ( 居住與支持分開 )

• 聚集 – ‘一些居住單位集合在一起形成與附近居民隔離的社區• 住宿區通常在教養院裡

• 聚集的房舍 –在同個點分開的房舍 , 或是只有一個出口

• 公社 (intentional villages) – 分開的地點 , 共享設施 – 不需付費分享生活 – 堅固的思想 (Camphill)

Design Type: Research Findings

Mansell & Beadle Brown (2009) reviewed 19 papers - 10 studies, UK, Oz, Netherlands, Ireland – most large robust studies

‘Dispersed housing is superior to cluster housing on the majority of quality indicators’

Cluster housing has poorer outcomes on domains of Social Inclusion, Material Well-Being, Self-Determination, Personal Development, and Rights

On most sub domains dispersed housing has better or no different outcomes (see table)

Only exception Physical Well-Being villages or clustered settings primarily villages not cluster

o No studies reporting benefits of clustered settings.

o No evidence cheaper

>No evidence more connected to community of people with intellectual disability

>No evidence that residents are safer in cluster settings

設計型態：研究發現Mansell & Beadle Brown (2009) 檢視 19篇文章 – 10 研究 , 英國 , 澳洲 , 荷蘭 , 愛爾蘭 – 最大且完整的研究

‘分散式的住宅在大多數品質指標都較優於群聚式的房舍’

聚集式住宅在社會融合，物質福祉，自我決策，個人發展以及權利的成果較差

分散式住宅在大多數的次領域都有較好或無差異的成果 (見下表 )

公社或是聚集式只有在生理福祉上的成果較好o 無研究顯示聚集式有好的成果

o 無實證比較便宜

> 無實證智能障礙者的社區連結較佳

> 無實證住在聚集式的住民比較安全

Quality of life domains Dispersed Better

No difference

Cluster /village better

Social inclusion x - - Access to local neighbourhood x - - Use of community facilities - xx - Number of community amenities visited

x - -

Community activities and opportunities

xxx x -

Residential well-being x - - Interpersonal Relations xx

xx

-

Sexual activity - x - Relationships with family, carers, others

x x -

Number of people in network xxx x - Composition of network - x - Contact with family/family members in network

- xxxx x

People with ID in network x xx - Local people in network x x - Contact with friends x x x Contact with neighbours - x - Observed contact from others - x - Stayed away/guest to stay - x - Vistors to home x - x Material Well-Being x xx - Emotional Well-Being - x

-

Challenging behaviour/stereotypy x

xx -

Satisfaction in all areas except friendships/relationships

- x -

Satisfaction friendships/relationships - - x Chaos and confusion x - -

Quality of life domains Dispersed Better

No difference

Cluster /village better

Self Determination xxxxxx xxxx - Personal Development - x - Scheduled activity x xx - Constructive activity - x - Opportunities to learn new skills

x - -

Change in adaptive behaviour over time

- x -

Change in domestic activity and in responsibility

x - -

Life achievements and changes

x - -

Education/employment x - - Work experience/adult education/day centre activities

- x -

Rights -

-

-

Privacy x - - Access/adapted environment - x - Freedom x - - Exclusion/restraint, sedation used for challenging behaviour

x - -

生活品質領域 分散式較佳

無差別 聚集 /公設較佳

社會融合 x

有管道與當地鄰里接觸 x

使用社區設施 xx

拜訪社區文化福利設施的數量 x

社區活動與機會 xxx x

住宿福祉 x

人際關係 x

性活動 x

與家人、照顧者以及其他人的關係

x x

網絡的人數 xxx x

網絡的構成 x

與家人 / 家庭成員的接觸 xxx x

網絡中有智能障礙同儕 x xx

網絡中有當地居民 x x

與朋友的接觸 x x x

與鄰居的接觸 x

生活品質領域 分散式較佳

無差別

聚集 /公設較佳

他人觀察到的接觸 x

外宿 /訪客來住 x

訪客來家拜訪 x x

物質福祉 x xx

情緒福祉 x

挑戰性行為 /刻板化 x xx

除了友誼 / 人際關係其他領域皆滿意 x

滿意人際關係 x

衝突與混亂 x

個人發展 x

預定的活動 x xx

結構化的活動 x

學習新技能的機會 x

適應行為的改變 x

居家活動以及負責任的改變 x

生活成就與改變 x

教育 /就業 x

生活品質領域 分散式較佳

無差別 聚集 /公設較佳

工作經驗 / 成人教育 /日間中心活動 x

權利

隱私 x

有管道 /環境調整 x

自由 x

隔離 / 為了挑戰性行為使用的限制、鎮靜藥物 x

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Design Type: Research Findings Supported Living

• Semi independent living US

• ‘Personalised residential supports’ Australia (Cocks & Boaden, 2011)

• 1-3 people, separation housing & support , drop in support or 24 hour (Kinsella,

1993).

• Likely to grow with new funding arrangements

• Little evidence re outcomes, support arrangements or communities

• Better outcomes

• choice, frequency and range of community activities,

• more cost effective (Stancliffe, 1997, Stancliiffe & Keene, 2000; Howe et al., 1998, Emerson et al, 2001, Perry et al., 2012)

• Poor outcomes

• exploitation, scheduled activities, health, money management (Felce et al., 2008; Perry et al.,

2012; Emerson et al., 2001)

• Few differences – except choice and control (Stainton et al., 2011)

• Implementation issues - absence of appropriate support – formal and informal

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設計型態： 研究發現 支持性居住

• 美國半獨立居住

• 澳洲‘個人化居住支持’ (Cocks & Boaden, 2011)

• 1-3 人，住宅與支持分開， 探訪式支持 (drop in support) 或 24 小時 (Kinsella, 1993).

• 很可能跟新的經費安排方式一起成長

• 在成果上少有實證，支持安排或是社區

• 較好的成果

• 選擇，參與社區活動的頻率與範圍，• 更具成本效益 (Stancliffe, 1997, Stancliiffe & Keene, 2000; Howe et al., 1998, Emerson et al, 2001, Perry et al., 2012)

• 較差的成果

• 剝削、預定的活動、健康、金錢管理 (Felce et al., 2008; Perry et al., 2012; Emerson et al., 2001)

• 少有不同之處 – 除了選擇與掌控 (Stainton et al., 2011)

• 與執行有關的議題 – 缺乏適當的支持 – 正式與非正式

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Situation in Australia in Dispersed Supported AccommodationStudy of 6 organisations in Victoria – 33 group homes 151 residents (Mansell, Beadle Brown & Bigby, 2013 )

Level of Ability

> residents less disabled than comparable UK services (Netten et al., 2010)

> people with lower support needs more engaged – with little staff support

Low or Variable engagement - mean 51%

> people with more severe intellectual disability 39% vis 61% mild

Staff Practices

Staff Assistance - mean 3% of the time

Staff Contact - mean 10% of the time - 4-6 mins every hour

> 25% -50% of residents no contact during an hour

Only consistently high levels of Active Support in one organisation, especially for people with more severe disabilities

Substantial variation within and between homes – less than 1/3 people were receiving consistently good support

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澳洲分散式支持性居住的現況研究維多利亞的 6 個組織 – 33 個團體家庭， 151位住民 (Mansell, Beadle Brown & Bigby, 2013 )

程度

> 障礙程度較英國服務的住民好 (Netten et al., 2010)

> 支持需求較少者所從事的活動較多 – 只需工作人員少部分的支持

低或所從事的多樣性 - 平均值為 51%

> 越重度的智能障礙者是 39% 而輕度的是 61%

工作人員的實作

工作人的的協助 – 大部分的平均值是 3%

工作人員的接觸 – 大部分平均值是 10% - 每小時 4-6 分鐘

> 有 25% -50% 的住民在該小時是沒有任何接觸 特別是對更重度的障礙者，只有一個組織的積極性支持的一致性是高的 在不同的團體家庭有顯著的差異 – 持續獲得適當支持的人不到 1/3

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Staff Culture in Group Homes

> Resemblance to aspects of institutional culture – qualitatively different , more individualised, more taking care of

> Most resemblance – social distance – manifested as ‘otherness’ ‘not like us’ (Bigby et al., 2012)

Dimension Polar End (s) Descriptor

Alignment of power-

holders with the

organisation’s values

Misalignment of power holder

values with organisations

espoused values (alignment)

‘We’re not going to do

it that way’.

Regard for service

users

Otherness (the same as other

citizens)

‘Not like us’

Perceived purpose Doing for (doing with) ‘We look after them’

Working practices

Staff centred (client centred)

‘Get it done so we can

sit down’

Orientation to change

and ideas

Resistance (openness)

‘Yes but’

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團體家庭工作人員的文化

> 與教養院的文化面向相似 –性質上的不同 ， 更個別化，更多的照顧

> 最相似的 – 社會的疏離–昭顯 ‘異類’ ‘跟我們不一樣’ (Bigby et al., 2012)

面向 兩端 描述

擁有權力者與組織價值間有校準

擁有權力者的價值與組織信奉的價值未校準 (校準一致 )

“我們沒有要那樣做”

對服務使用者的關注 異類 ( 與其它的公民相同 ) “跟我們不一樣”

所理解的目的 為他 ( 一起 ) “我們照顧他們”

工作上的實作 工作人員為中心 (服務使用者為中心 )

“把它做完，我們就可以坐下來休息了”

對改變與想法的定位 抗拒 ( 開放 ) “是的，但是”

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Group Home Culture

When we get to the shopping centre we are taken to a café/juice bar. The four men are seated around a table and Jeff [house supervisor] and Kirsten go to the counter. They come back with four identical orange-based drinks and doughnuts. [No effort to offer a choice or involve people in paying for the drinks.] I go and order my drink. The seating area is quite tight, so Kirsten sits at a different table. Valerie, who is working later that afternoon, passes the table where we are sitting and talks to Kirsten. (F/MS/021105)

Misalignment of power-holders with the organisation’s values •Disregard for a comprehensive understanding of the goal of building inclusive communities• Focus on community presence but not community participation•Power held by cliques

Regard service users as ‘other’ •Fundamentally different• Too disabled• No skills• Can watch, but not get involved

Purpose - doing ‘for’ not ‘with’ • Looking after people – looking after the house •Getting people out•Sequential – hierarchy – tasks then engagement

Resistance to change and new ideas •Resistance to ideas of community participation, active support, and more individualised activities

Staff centred working practices •Staff needs prioritised•Block treatment

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團體家庭的文化

當我們到購物中心 , 我們就到咖啡 /果汁販賣區 ,四個人坐一個圓桌 ,然後傑夫 [房舍督導 ] 與庫里斯頓就到櫃台 . 回來時他們手上就端著四杯一模一樣的橘子汁跟甜甜圈 . [完全沒有提供選擇或是讓他們參與付款 .] 我到櫃檯點我的飲料 . 座位有點擁擠 , 所以庫里斯頓坐另一桌 . 下午晚點當班的微拉走過我們坐的那桌然後跟庫里斯頓說話 . (F/MS/021105)

權力擁有者與組織的價值未校準 •忽視對建構融合社區此目標的通盤了解•焦點放在社區的露出而非社區參與•權力操控在特定的派別

視服務使用者為 ‘ ’ 異類•本質上就不同• 障礙程度太重了• 沒有技能• 可以在旁觀看 ,但不能參與其中

目的 - ‘ ’為他 做而非 ‘ ’ 跟他 一起做• 照顧人 – 照顧房子•讓這些人出去•連續性 – 層級 – 先職務然後從事參與

抗拒改變與新想法 •抗拒社區參與 ,積極性支持 , 更個別化活動的想法

以工作人員為中心 的實作 •視員工需求優先•團體式的治療處遇

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What is a good group home? What should you expect to see?

Do these findings reasonate with your services?

What is a good group home ?

What should you expect to see?

o resident outcomes

o staff practices

o organisational processes

Raising your sights [clip Alex and Simonn] Mansell, 2010

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什麼是團體家庭 ? 你應該期待看到什麼 ?

這些發現跟你的服務有相同之處嗎 ? 有引起你的共鳴嗎 ?

什麼是好的團體家庭 ?

你應該期待看到些什麼 ?

o 住民的成果o 工作人員的實作o 組織的過程

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Good outcomes - Indicators Quality of Life

Domain Indicators which can be observed for people with severe and profound intellectual disabilities receiving support

Social Inclusion People live in an ordinary house in an ordinary street in which other people without disabilities live People are supported to access the local community and its facilities People are supported to take part in activities in the community not just with other people with disabilities. Support can be

paid support, families, volunteers, the members of community groups which the person attends. People are supported to have a valued role in the community. People are known by their name and are missed if they are not present.

Physical well-being People are supported to move around safely in their home and in the community (without staff being risk averse). Personal care is provided well and promptly, and pain/illness recognised and responded to People are supported to live healthy lifestyles with a healthy diet and adequate exercise People are supported to relax and take part in leisure and hobbies of their choosing People are supported to access healthcare promptly when ill as well as regular health checks appropriate to age and

disability.

Interpersonal relations

Where people have family, they are supported to have positive contact with them on a mutually agreed or satisfying basis. People have members in their social network other than immediate family, and paid staff and their associates. People are supported to develop and sustain contact with new people with similar interests both with and without

disabilities. People experience positive, respectful, helpful interactions with staff and others in their social network. From at least some, ideally most, of these contacts, people experience affection and warmth.

Material well-being People have a home to live in that is suited to their needs in terms of location, design, size and décor, within the constraints of cultural and economic appropriateness.

People have their own possessions which are displayed appropriately around their home. People have enough money (through employment or benefits) to afford the essentials in life and at least some non-

essentials (e.g. holiday, participation in preferred activities in the community etc). People have reliable transport to access community facilities that they would like to or need to access

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Emotional well-being

People appear content with their environment, their activities and their support

People take part happily in a range of activities and interactions when given the right support to do so

People do not show challenging behaviour or spend long periods in self-stimulatory behaviour

People appear at ease with staff presence and support

Self-determination People are supported to make choices and their choices respected (at least about day to day aspects and preferably about larger life decisions)

People’s own preferences and agendas guide what staff do rather than staff’s agendas and preferences

People are supported to understand and predict what their day will be like

People are supported to be part of their person-centred planning process and/or have someone who knows them well and who can help others to understand their desires and wishes.

Personal development

People are supported to engage in meaningful activities across a range of life areas (employment, household/gardening, leisure, education, social)

People are supported to try new activities and experiences where they experience success and develop skills.

People are supported to demonstrate what they can do (their competence) and experience self-esteem.

Rights People’s dignity and privacy are respected

People are supported to follow their religious and cultural beliefs if they wish to

People are supported to access to all communal areas in their own home and garden as and when they wish to

People are supported to have meaningful input into their household direction, and ideally into service and organisational direction and into broader lobbying efforts

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好的成果 -指標

生活品質領域 接受支持的重度 /極重度智能障礙者可觀察到的指標

社會融合 住在跟其他非障礙者一樣的一般鄰里中的房舍

獲得支持得以有管道到當地社區與使用其設施

獲得支持參與社區的活動而不是只跟其他障礙者在一起，支持可以是付費的、家人、志工，所參與社區團體的成員獲得支持在社區有其角色

是以他們個人的名字而被認同，因為他們不在而被想念

生理福祉 獲得支持可以在他們的家與社區安全的四處走動 ( 不會因工作人員考量風險而反對 )

提供的個人照顧是適當且迅速的，並回應其痛苦 /病痛

獲得支持有健康的飲食與適當的運動過著健康的生活方式

獲得支持可以放鬆並在他們的選擇下參與休閒與有其嗜好

當生病或是適合其年齡與障礙的例行健康檢查時，獲得支持可迅速的取得健康照顧

人際關係 在雙方同意或滿意的基礎下，獲得支持可以跟家人保持正向的接觸

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好的成果 -指標生活品質領域 接受支持的重度 /極重度智能障礙者可觀察到的指標

人際關係 除了最接近的家人、支薪的工作人員與參與的團體外，有他們自己的社交網絡成員獲得支持可以跟無論是否有障礙但興趣相類似的人發展並維持接觸

在與工作人員及其社交網絡的互動是正向、受到尊重與有所助益

在這些互動經驗中，雖理想上是最大值，但至少有感受到感動與溫暖

物質福祉 在文化與經濟的適當性下，住在符合他們的需求的家，無論是在地點、設計、大小與裝潢可以擁有個人的物品並可在他們的家中適當的展示

有足夠的錢 (就業或是福利 ) 支持生活的一些基本開銷或是至少對某些人來說是基本的生活 (如渡假、參與在社區中喜好的活動等 )

有可信賴的交通支持讓他們在想要或需要時使用社區設施

情緒福祉 對他們的環境、活動與所獲得的支持感到滿足

當給予適當的支持可愉快的參與活動並有互動

人們沒有呈現挑戰性行為或是大部分的時間沒有自我刺激行為

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好的成果 -指標生活品質領域 接受支持的重度 /極重度智能障礙者可觀察到的指標

情緒福祉 當工作人員在場跟提供支持時，所呈現出是自在的

自我決策 獲得支持做決定，並所做的決定亦受到尊重 (至少在每日的生活與較大生活決定時 )

是以人們的喜好與作息來做工作人員的指引，而非以工作人員的

獲得支持以了解並預期他們的生活

獲得支持以參與他們以個人為中心的計畫過程，並 / 或有了解他們的人可以幫助他人了解他們的欲求與想望

個人發展 獲得支持在生活各領域從事有意義的活動 (就業、家事 /園藝、休閒、教育、社交 )

獲得支持嚐試新的活動與經驗，他們可以感受到成功與發展技能

獲得支持以展現他們所能並感受到自尊

權利 人們的尊嚴與隱私受到尊重

當想要時獲得支持去遵循他們的信仰與文化

當他們想要時獲得支持可以在他們的家與花園的公共空間活動

獲得支持可對他們家務提供有意義的訊息，理想上亦可對服務與組織的方向有所投入，並可努力做更廣大的倡議

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Glimpses of a different culture - Positive regard for residents ‘Like Us’ - assumption of essential humanness

When we just call them people, like I would call you a person, that just seems way more respectful, and I think it gives everyone the attitude, around how you’re thinking too. If you’re treating people with the respect they deserve, then people will respect them (I/KF/083011).

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不同文化的一瞥 - 對住民正向的關注 ‘像我們一樣’ - 對人性的基本假設

當我們稱呼他們人們，就像我稱呼你一樣，這樣似乎比較尊敬些，我想這給每個人一種態度，並影響你的思考模式，如果你尊重的對待人們，那麼其他人也會尊重他們 (I/KF/083011).

工作人員說 工作人員的行為人們是有感覺的 海蒂提到住民有體面衣服的

重要性，她說穿著會讓住民對自己有更良好的感覺。

卡迪亞給克勞爾一些炒蛋…她說克勞爾如果想要食物時會看著她並張開嘴，會讓你知道什麼時候不想要。卡迪亞檢查炒蛋的溫度…建議克勞爾在嘴巴四周移動炒蛋的方式可能表示蛋溫度太暖些

人們是可以思考的

日前妮可真的暴怒，好像她在告訴我們閉嘴，要我們聽她說。

珍珠問妮可是否準備好要吃早餐了 ,她站在妮可身旁看著她的臉說 :”你想要些蛋嗎 ?” 我想她沒有回應，因為她說“你想想看”

人們是可以理解的

魯巴了解你說的任何事，也會讓你知道她不高興。她也知道開玩笑也會跟著笑，如果魯巴不高興你做某些事或你太快移動她時，她會咕噥作聲。

凱蒂跟魯巴說有五張桌子，她加上“這是我們今天要找尋的數字”

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Attending to DifferenceAttached little importance to severity of impairment

Discomfort with articulating difference – only when pushed

He relies on my judgement a lot I suppose, what we do and where we go, which is okay, because the basic fact is that Hank can’t tell me exactly what he wants to do, but we try and find stuff that he likes to do. (I/LL/091611)

Acknowledged Limitations

Minimally they might put away their washing....if someone’s home Daisy or Pearl or someone [staff] will put their washing on their chair tables and take them into their room, but that’s as far as it goes. They can’t put the clothes into their wardrobes themselves, so the staff take over. (I/AM/083011).

‘The arms and legs’ of residents, doing things that people could not do for themselves.

Developmental age reflected in interactions – playful interactions – having fun.

Pearl takes the pills and some chocolate mousse down to Kirstin’s bedroom, where Kirstin is lying in her bed. She knocks on the door, goes in, nudges Kirstin and speaks to her. Kirstin opens her eyes and wants to hold Pearl’s hands. They hold hands and clap them together. (F/ED/072811)

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關注不同之處損傷嚴重度的重要性低

對要詳述差異感到不舒坦 – 只有在被要求時

我想他很倚賴我的判斷，我們做什麼去哪裡是可以的， 因為根本的現實是漢克沒辦法清楚的告訴我他想做什麼，但我們嘗試並去發現他喜歡做的事情 (I/LL/091611)

認同限制

至少他們可能會將他們的清洗的衣物放好 ....如果在黛西或珍珠的家或是其他人 [ 工作人員 ] 會把放在他們桌上的衣物放回他們的房間，但最多就是這樣了，他們沒辦法自己把他們的衣物放進衣櫃裡， 所以工作人員就接手做了 . (I/AM/083011).

當住民的‘手腳’， 幫人們做他們自己無法做到的事 .

發展年齡反映在互動 – 開玩笑的互動 – 有趣 .

珍珠拿著藥跟一些巧克力慕斯到克莉斯汀的臥室，她躺在床上，珍珠敲敲門然後走進去，輕輕的擠著克莉斯汀跟她說話，她張開眼想要跟珍珠握手， 他們握手並一起拍手擊掌 . (F/ED/072811)

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Guides to Thinking- Heuristics

The Golden Rule

‘Do unto others as you would have them do unto you (Honderich, 1995, p.321).

Staff avoided de-personalising language, treated residents respectfully, got them out of the house on weekends as this is how staff themselves would like to be treated.

‘I think of how would I like to be treated myself. I mean anything can happen. Next week I could be in a wheelchair myself, so I like to treat people how I feel that I would like to be treated’. (I/BH/102811)

Referent is staff members own preferences and values

The Platinum Rule [empathy]

‘Doing unto others, wherever possible, as they want to be done by’ (Popper (1945/1962)

• Understanding the perspective or standing in the shoes of another

•Interpreting facial expressions, behaviours, and body language and state with confidence that someone is feeling cold, distressed, happy, in pain, etc.

Juggling two rules

‘If I was in Hank’s position, what would I expect? And I would expect someone to help me do this stuff, so it’s not really a big deal, and for Hank it’s been his whole life, so he probably just sees it as being helped to do all of this stuff. It’s normal for him’. (I/AC/091611)

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思考的指引 - 啟發式教學法

黃金規則 ‘己所欲 , 施於人” (Honderich, 1995, p.321).

工作人員避免去人格化的語言，尊重的對待住民，讓他們在周末時可以出去走走，就像工作人員自身也希望會如此被對待 .

‘我想我會希望別人如何對待我，我說什麼事都可能發生，下星期我可能坐輪椅，所以我希望我想要如何被對待，也用同樣的方式對待別人’ . (I/BH/102811)

是工作人員自己的喜好與價值白金規則 [ 同理心 ]

‘盡可能以對方想要的方式來做事’ (Popper (1945/1962)

• 了解他人的觀點站在對方的立場

• 解讀臉部表情、行為， 以及肢體語言並有自信的陳述某人是感覺到冷、挫折、高興、痛苦等

兩規則的戲法‘如果我站在漢克的立場，我會期待什麼？ 我會期待有人幫我做這些事，所以這不是什麼大不了的事，這對漢克而言是他生活的全部，所以做所有這些事他可能會認為有幫助，對他來說是很正常的’ . (I/AC/091611)

Person Centred Approaches‘There is now no serious alternative to the principle that services should be tailored to individual needs, circumstances and wants’ (Mansell & Beadle Brown, 2005)

Striving to be Person centred is a core feature of health and social service systems

Represents fundamental shift in thinking – evolved over past 40 years

• Individualization - finely tailored to the needs and wishes of the individual;

• Responsiveness - adapt to the changing needs and continually shape support to the needs of the individual

• Control - individuals exercise control over the type of services and support they receive (Mansell, 2005)

• Understood and operationalised at different levels of system e.g. control

• System level - control of a funding package = choice of service provider or place of residence

• Organisational level - control over the type of service = choice when support is provided, by whom, staff selection and who a person might live with.

• Micro individual level - control of what and how support is provided on daily basis = control of how long have a shower, bath or shower or whether support provided to interact with a local shopkeeper

- reliant on skills of staff

- providing the opportunity so a person can experience the possibility they like or dislike

-capacity to elicit and respond to service user feedback about it.

以個人為中心的方式‘對服務應當以個人的需求、狀況與想望為主的原則當今沒有其他重要的替代方案’

(Mansell & Beadle Brown, 2005)

致力於以個人為中心是健康與社會服務系統的核心特色

代表思考的根本轉移 – 過去四十年來的逐步發展出來的• 個別化 (Individualization) – 細緻的以個人的需求與想望為基礎；

• 回應性 (Responsiveness) – 因應改變的需求做調整並持續發展支持以符合個別需求

• 掌控 (Control) – 個人可以對服務與獲得的支持型態有所掌控 (Mansell, 2005)

• 了解並在不同的體制加以實踐，例如掌控

• 系統層級 – 對經費有掌控 = 選擇服務提供者或是住的地方

• 組織層級 – 掌控服務的型態 = 當提供支持時可以選擇 ,由誰提供 , 選擇工作人員及跟誰住 .

• 微視個人層級 – 對每日的生活提供什麼支持與如何支持有所掌控 = 要洗多久的澡 , 或是淋浴或是盆浴或是跟店員互動的時候是否需要支持的掌控

-倚賴工作人員的技巧

- 提供機會讓個人可以經驗可能的喜好或不喜歡的

- 有能力引發與回應服務使用者的回饋 .

Person centred action Different person-centred approaches tackle different levels of the system

People with more severe intellectual disability need more than funds, system design, person centred thinking or planning

Action at the micro level to improve outcomes and achieve values such as inclusion, independence and choice and control.

Skilled staff support to facilitate:

Engagement in meaningful activity and relationships are the primary vehicles by which many aspects of quality of life are realised (Schalock & Alonso, 2002).

> personal development is only possible if people participate in activities that broaden their experiences;

> interpersonal relations and social inclusion depend on interacting with other people; and

> physical health depends on lifestyle and activity (Robertson et al. 2000; Beadle-Brown, 2006; Mansell & Beadle-Brown, 2012).

•Engagement - An indicator of quality of life

•Engagement - A means to achieving quality of life

以個人為中心的行動 在體制的不同層級採用不同的以個人為中心的方法

越重度的智能障礙者需要不只是經費、系統設計、以個人為中心的思考或計畫

在微視層級採取的行動以提升成果及達成價值例如融合、 獨立、選擇、及掌控 .

有技巧工作人員的支持以促進：

從事有意義的活動與關係是生活品質許多面向的主要管道 (Schalock & Alonso, 2002).

> 個人發展只有在所參與的活動是會拓展他們的經驗時才有可能；

> 人際關係與社會融合會依與他人的互動而定； 並

> 生理福祉有賴於生活方式與活動 (Robertson et al. 2000; Beadle-Brown, 2006; Mansell & Beadle-Brown, 2012).

•從事 – 生活品質的一個指標

•從事 – 是達成生活品質的方法

What makes a difference – not just values Good quality of life outcomes when......Complex interactions 6 main elements

Necessary but notsufficient conditions• Adequate resources•Size & Type

Coherence of organisational valuesand policies & a mission that puts quality of life of service-users at the core of all its actions • Organisational leadership policies and procedures • Service characteristics• Staff training• Staff characteristics

An informal culture that iscongruent with and supportsthe formal mission of theorganisation

Service user characteristics Organisational and staffpractices that compensateas far as possible forinherently disadvantageouscharacteristics of residents

Staff and managerialworking practices thatreflect organisationalvalues and policies andthe principles of active support

An external environment that iscongruent and reinforces themission and values of theorganisation

什麼導致差異 – 不只是價值觀 良好的生活品質成果當 ......六個要素間複雜的交互作用

必要但不是充分足夠的條件•足夠的資源•大小 & 型態

組織的價值與政策及宗旨的凝聚力將服務使用者的生活品質視為 其所有行動的核心 • 組織的領導統御政策與程序 • 服務的特性• 人員訓練• 人員特質

非正式的文化與組織的正式宗旨相一致並支持

服務使用者的特質 組織與工作人員的實作盡可能的補足住民天生的不利特質

工作人員與管理層級的實作反映出組織的價值與政策積極性支持原則

外在環境與組織的宗旨一致並予以強化

Challenges for the Future Reduce variability in group homes models – adopt strong clear practice frameworks

Attention on micro level practice

Development of core practice frameworks – the Way we Work combining person centred approaches rather than disaggregating

Value and recognition of skilled practice – empathy is not enough

• Individualism and growth of dedifferentiation – loss of specialist knowledge

Whole of organisational approach diverse programs and service users

Use of Active Support across settings and service types – as indivdualised support more common (revisiting Saxby et al., 1986 - convivial encounters)

Organisation of practice leadership – dispersed individual settings – unbundle from administrative tasks

Political and Community commitment

Social solidarity to provide funding

Social connections to be involved

‘there are risks to be managed which cannot not be addressed by person centred planning or this way or that way which require strategic direction of public authorities in other domains.

未來的挑戰 降低團體家庭模式的差異 – 採用強而有力且清楚的實作架構

關注微視層級的實作

發展核心實作架構 – 我們工作的方式是以個人為中心的方式而非分解 (disaggregating)

看重價值與認同有技巧的實作 –同理心是不夠的

• 個別化與去差異化的成長 – 喪失專業特殊化的知識

在不同的情境與服務型態使用積極性支持 – 當個別化支持越來越普及 (revisiting Saxby et al., 1986 - convivial encounters)

實作領導的組織 – 多元的個別化情境 – 從行政工作上鬆綁

政策與社區的承諾

社會團結一致提供經費 社會連結以參與其中

‘ 以個人為中心的計畫有其無法處理需要面對的風險，需要公家機關在其他領域有策略方向

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Contact c.bigby@latrobe.edu.au

Resources

Raising our sights services for adults with profound intellectual and multiple disabilities : a report / by Jim Mansell. Vidoes

http://webarchive.nationalarchives.gov.uk/+/www.dh.gov.uk/en/MediaCentre/Media/DH_117967

http://www.kent.ac.uk/tizard/news/Raising_our_sights_video.html

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連絡信箱 : c.bigby@latrobe.edu.au

參考資源

Raising our sights services for adults with profound intellectual and multiple disabilities : a report / by Jim Mansell. Vidoes

http://webarchive.nationalarchives.gov.uk/+/www.dh.gov.uk/en/MediaCentre/Media/DH_117967

http://www.kent.ac.uk/tizard/news/Raising_our_sights_video.html

References 1( 參考文獻 )Bigby, C (2006). Shifting models of welfare: Issues in the relocation from an institution and the organisation of community

living. Journal of Policy and Practice in Intellectual Disability, 3, 147-154.

Bigby, C., & Fyffe, C. (2006) Tensions between institutional closure and deinstitutionalization: What can be learned from Victoria’s institutional redevelopment. Disability and Society, 21, 6, 567 - 581

Bigby, C., & Fyffe, C. (2006) Tensions between institutional closure and deinstitutionalization:

Bigby, C., & Fyffe, C. (2009). A position statement on housing and support for people with intellectual disability and high, complex or changing needs. Journal of Intellectual and Developmental Disability, 34, 96-100

Bigby, C., T. Clement, J. Mansell and J. Beadle-Brown. 2009. ‘it’s pretty hard with our ones, they can’t talk, the more able bodied can participate’: Staff attitudes about the applicability of disability policies to people with severe and profound intellectual disabilities. Journal of Intellectual Disability Research 53: 363-76.

Bigby, C. and T. Clement. 2010. Social inclusion of people with more severe intellectual disability relocated to the community between 1999-2009: Problems of dedifferentiated policy? In More than community presence: Social inclusion for people with intellectual disability. Proceedings of the fourth annual roundtable on intellectual disability policy., 30-40. Bundoora: La Trobe University.

Bigby, C., & Fyffe, C. (2010). More than Community Presence: Social Inclusion for People with Intellectual Disability. Proceedings of the Fourth Annual Roundtable On Intellectual Disability Policy. Bundoora: La Trobe University.

Mansell., J., Beadle-Brown, J., & Bigby, C. (in press) Implementation of active support in Victoria, Australia: an exploratory study. Journal of Intellectual and Developmental Disabilities

 Johnson, H., Douglas, J., Bigby, C., Iacono, T (2012). A model of processes that underpin positive relationships for adults with severe intellectual disability. Journal of Intellectual and Developmental Disabilities 37, 4, pp. 324–336.

Bigby, C., Knox, M., Beadle-Brown, J., Clement, T., Mansell., J (2012) Uncovering Dimensions of Informal Culture in Underperforming Group Homes for People with Severe Intellectual Disabilities. Intellectual and Developmental Disabilities

 

References 2 ( 參考文獻 ) Bigby, C., (2012). Social Inclusion and People with Challenging Behavior: A Systematic Review. Journal of Intellectual and

Developmental Disability. 37, 4, 360–374.

 Clement, T., & Bigby, C. (2012). Competencies of frontline managers of supported accommodation services: Issues for practice and future research. Journal of Intellectual and Developmental Disability, 37,131-140

 Johnson, H., Douglas, J., Bigby, C., Iacono, T (2012) Social interaction with adults with severe intellectual disability: Having fun and hanging out. Journal of Applied Research in Intellectual Disability 25, 329-341

 Blatt, B. and F. Kaplan. 1966. Christmas in purgatory: A photographic essay on mental retardation. Boston, Mass: Allyn and Bacon.

Bradley, V., J. Ashbaugh and B. Blaney. 1994. Creating individual supports for people with developmental disabilities: A mandate for change at many levels. Baltimore: Brookes.

Clement, T. and C. Bigby. 2010. Group homes for people with intellectual disabilities: Encouraging inclusion and participation. London: Jessica Kingsley Publishers.

Clement, T. and C. Bigby. 2011. From cult to functional values: Interpreting the principles, goals and strategies of disability policy. In State disability policy for the next 10 years - what should it look like? Proceedings of the fifth annual roundtable on intellectual disability policy, 41-51. Bundoora: La Trobe University.

Clement, T., Bigby, C., Mansell, J., Beadle- Brown, J., & Knox, M. (2010). Developing a theoretical framework for group home outcomes: a realist based review of the literature . Journal of Applied Research on Intellectual Disability, 23, 5 487

Emerson, E. 2004. Cluster housing for adults with intellectual disabilities. Journal of Intellectual & Developmental Disability 29: 187-97.

  Emerson, E. and C. Hatton. 1996. Deinstitutionalization in the uk and ireland: Outcomes for service-users. Journal of Intellectual and Developmental Disabilities 21: 17-37.

Felce, D. 1996. Quality of support for ordinary living. In Deinstitutionalization and community living: Intellectual disability services in britain, scandinavia and the USA, 117-33. London: Chapman & Hall.

References 3 ( 參考文獻 )Janssen, C.E.A. 1999. Quality of life of people with mental retardation: Residential versus community living. Bristish Journal of Developmental

Disabilities 45: 3-15.

King, R.D., N.V. Raynes and J. Tizard. 1971. Patterns of residential care: Sociological studies in institutions for handicapped children. London: Routledge & Kegan Paul.

Kozma, A., J. Mansell and J. Beadle-Brown. 2009. Outcomes in different residential settings for people with intellectual disability: A systematic review. American Journal on Intellectual and Developmental Disabilities 114: 193-222.

Mansell, J. and J. Beadle-Brown. 2009. Dispersed or clustered housing for adults with intellectual disability: A systematic review. Journal of Intellectual and Developmental Disability 34: 313-23.

Mansell, J. and K. Ericsson eds. 1996. Deinstitutionalization and community living: Intellectual disability services in britain, scandinavia and the USA. London: Chapman & Hall.

Mansell, J. 2010. Raising our sights: Services for adults with profound intellectual and multiple disabilities. London: Department of Health.

http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_114346

Mansell, J. 1996. Issues in community services in britain. In Deinstitutionalization and community living: Intellectual disability services in britain, scandanavia and the USA, 49-63. London: Chapman & Hall.

Mansell, J. 2006. Deinstitutionalisation and community living: Progress, problems and priorities. Journal of Intellectual and Developmental Disabilities 31: 65-76.

Mansell, J. and J. Beadle-Brown. 2010. Deinstitutionalisation and community living: Position statement of the comparative policy and practice special interest research group of the international association for the scientific study of intellectual disabilities. Journal of Intellectual Disability Research 54: 104-12.

Tøssebro, J. 1995. Impact of size revisited: Relation of number of residents to self determination and deprivation. American Journal on Mental Retardation 100: 59-67.

Young, L. 2006. Community and cluster centre residential services for adults with intellectual disability: Long-term results from an Australian-matched sample. Journal of Intellectual Disability Research. 50: 419-31.