Supporting People with Intellectual Disability toLive Good Lives in the Community – the Roleof Group Homes Past- Present and Future.Professor Christine BigbyLiving with Disability Research GroupLa Trobe UniversitySuppLiveGrouProfeLivingLaTro& DrUnive
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 BigbyLiving with Disability Research GroupLa Trobe UniversitySuppLiveGrouProfeLivingLaTro& DrUnive
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
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 andhumanity)• rigidity of routine (fixed timetables irrespective of preferences or needs)• block treatment (processing people in groups without privacy orindividuality)• 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 ofnormalisation
Deinstitutionlisation“….one common factor is the embrace of the concept of normalisation and the rejection ofsegregation 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, toprepare our communities to accept persons with intellectual disabilities as valued andcontributing members of our society. (Gallant, 1994, cited Bigby & Fyffe, 2006)Main strategy - accommodation support - little initial attention to community change̶ 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 closedUK– small supported accommodation– campus cluster style accommodation small units on same site many now closed– some intentional villages– growth of supported living options
Research Findings: DeinstitutionalisationBetter outcomes‘There can be no doubt, in general, that people with an intellectual disabilitybenefited 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 Everyone̶ Early UK demonstration programs - community living is possible for everyone– even people with severe challenging behavior and high complex supportneeds (Mansell et al., 1987)
Research Findings: VariabilityVariationBest institutions better than the worse supported accommodation (staffedindividual or small group)Best supported accommodation exceeds best institutionsVariability most apparent on QoL domains of community participation, socialnetworks and self determinationPeople with more severe intellectual disability fare worseClosing 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 meaningfulactivities has persisted in community houses(Mansell, 1996)Is the model flawed or the implementation?Community living requires careful andsustained implementation and monitoring strategies. clip
Variability in performance in residential settings in England andWales for engagement in meaningful activityMansell (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
Post Deinstitutionlisation ResearchWhy variability – why best institutions cannot matchDegree of impairment major predictorNecessary but Not Sufficient Conditions –Resources - below a critical threshold will affect outcomes – there are no cheapgood 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 (separatehousing and support)•Cluster – ‘number of living units forming a separate community from the surroundingpopulation’• 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
Design Type: Research FindingsMansell & 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 qualityindicators’Cluster housing has poorer outcomes on domains of Social Inclusion, MaterialWell-Being, Self-Determination, Personal Development, and RightsOn most sub domains dispersed housing has better or no different outcomes(see table)Only exception Physical Well-Being villages or clustered settings primarilyvillages not clustero No studies reporting benefits of clustered settings.o No evidence cheaper̶No evidence more connected to community of people with intellectual disability̶No evidence that residents are safer in cluster settings
Quality of life domains DispersedBetterNodifferenceCluster/villagebetterSocial inclusion x - -Access to local neighbourhood x - -Use of community facilities - xx -Number of community amenitiesvisitedx - -Community activities andopportunitiesxxx x -Residential well-being x - -Interpersonal Relations xx xx -Sexual activity - x -Relationships with family, carers,othersx x -Number of people in network xxx x -Composition of network - x -Contact with family/family membersin network- xxxx xPeople with ID in network x xx -Local people in network x x -Contact with friends x x xContact with neighbours - x -Observed contact from others - x -Stayed away/guest to stay - x -Vistors to home x - xMaterial Well-Being x xx -Emotional Well-Being - x -Challenging behaviour/stereotypy x xx -Satisfaction in all areas exceptfriendships/relationships- x -Satisfaction friendships/relationships - - xChaos and confusion x - -Quality of life domains DispersedBetterNodifferenceCluster/villagebetterSelf Determination xxxxxx xxxx -Personal Development - x -Scheduled activity x xx -Constructive activity - x -Opportunities to learn newskillsx - -Change in adaptivebehaviour over time- x -Change in domestic activityand in responsibilityx - -Life achievements andchangesx - -Education/employment x - -Work experience/adulteducation/day centreactivities- x -Rights - - -Privacy x - -Access/adapted environment - x -Freedom x - -Exclusion/restraint, sedationused for challengingbehaviourx - -
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
22Design Type: Research FindingsSupported 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
23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
24Situation in Australia in Dispersed Supported AccommodationStudy of 6 organisations in Victoria – 33 group homes 151 residents (Mansell, Beadle Brown & Bigby,2013 )Level of Ability̶ residents less disabled than comparable UK services (Netten et al., 2010)̶ people with lower support needs more engaged – with little staff supportLow or Variable engagement - mean 51%̶ people with more severe intellectual disability 39% vis 61% mildStaff PracticesStaff Assistance - mean 3% of the timeStaff Contact - mean 10% of the time - 4-6 mins every hour̶ 25% -50% of residents no contact during an hour Only consistently high levels of Active Support in one organisation, especially forpeople with more severe disabilities Substantial variation within and between homes – less than 1/3 people werereceiving consistently good support
26Staff Culture in Group Homes̶ Resemblance to aspects of institutional culture – qualitatively different ,more individualised, more taking care of̶ Most resemblance – social distance – manifested as ‘otherness’ ‘not likeus’ (Bigby et al., 2012)Dimension Polar End (s) DescriptorAlignment of power-holders with theorganisation’s valuesMisalignment of power holdervalues with organisationsespoused values (alignment)‘We’re not going to doit that way’.Regard for serviceusersOtherness (the same as othercitizens)‘Not like us’Perceived purpose Doing for (doing with) ‘We look after them’Working practices Staff centred (client centred) ‘Get it done so we cansit down’Orientation to changeand ideasResistance (openness) ‘Yes but’
28Group Home CultureWhen we get to the shopping centrewe are taken to a café/juice bar. Thefour men are seated around a tableand Jeff [house supervisor] and Kirstengo to the counter. They come backwith four identical orange-based drinksand doughnuts. [No effort to offer achoice or involve people in paying forthe drinks.] I go and order my drink.The seating area is quite tight, soKirsten sits at a different table. Valerie,who is working later that afternoon,passes the table where we are sittingand talks to Kirsten. (F/MS/021105)Misalignment of power-holderswith the organisation’s values•Disregard for a comprehensiveunderstanding of the goal ofbuilding inclusive communities• Focus on community presencebut not community participation•Power held by cliquesRegard service users as‘other’•Fundamentally different• Too disabled• No skills• Can watch, but not getinvolvedPurpose - doing ‘for’ not ‘with’• Looking after people – looking after the house•Getting people out•Sequential – hierarchy – tasks then engagementResistance to change and newideas•Resistance to ideas of communityparticipation, active support, andmore individualised activitiesStaff centredworking practices•Staff needs prioritised•Block treatment
30What 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 outcomeso staff practiceso organisational processesRaising your sights [clip Alex and Simonn] Mansell, 2010
32Good outcomes - IndicatorsQuality of LifeDomainIndicators which can be observed for people with severe and profound intellectual disabilities receiving supportSocial 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 bepaid 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 anddisability.Interpersonalrelations• 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 withoutdisabilities.• 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 theconstraints 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
33Emotional 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 supportSelf-determination • People are supported to make choices and their choices respected (at least about day to day aspects and preferably aboutlarger 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 andwho can help others to understand their desires and wishes.Personaldevelopment• 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 organisationaldirection and into broader lobbying efforts
37Glimpses of a different culture -Positive regard for residents ‘Like Us’ - assumption ofessential humannessWhen we just call them people, like I would call you a person, that just seems way morerespectful, and I think it gives everyone the attitude, around how you’re thinking too. Ifyou’re treating people with the respect they deserve, then people will respect them(I/KF/083011).
39Attending to DifferenceAttached little importance to severity of impairmentDiscomfort with articulating difference – only when pushedHe 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 tryand find stuff that he likes to do. (I/LL/091611)Acknowledged LimitationsMinimally they might put away their washing....if someone’s home Daisy or Pearl orsomeone [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, sothe 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 – havingfun.Pearl takes the pills and some chocolate mousse down to Kirstin’s bedroom, whereKirstin is lying in her bed. She knocks on the door, goes in, nudges Kirstin and speaks toher. Kirstin opens her eyes and wants to hold Pearl’s hands. They hold hands and clapthem together. (F/ED/072811)
41Guides to Thinking- HeuristicsThe 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 thehouse 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 Icould be in a wheelchair myself, so I like to treat people how I feel that I would like to betreated’. (I/BH/102811)Referent is staff members own preferences and valuesThe 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 withconfidence 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 medo this stuff, so it’s not really a big deal, and for Hank it’s been his whole life, so heprobably just sees it as being helped to do all of this stuff. It’s normal for him’.(I/AC/091611)
Person Centred Approaches‘There is now no serious alternative to the principle that services should be tailored toindividual needs, circumstances and wants’ (Mansell & Beadle Brown, 2005)Striving to be Person centred is a core feature of health and social service systemsRepresents 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 theneeds 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 ofresidence• 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 = controlof how long have a shower, bath or shower or whether support provided to interact with alocal 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.
Person centred actionDifferent person-centred approaches tackle different levels of the systemPeople with more severe intellectual disability need more than funds, systemdesign, person centred thinking or planningAction at the micro level to improve outcomes and achieve values such asinclusion, independence and choice and control.Skilled staff support to facilitate:Engagement in meaningful activity and relationships are the primary vehicles bywhich many aspects of quality of life are realised (Schalock & Alonso, 2002).̶ personal development is only possible if people participate inactivities that broaden their experiences;̶ interpersonal relations and social inclusion depend on interactingwith other people; and̶ 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
What makes a difference – not just valuesGood quality of life outcomes when......Complex interactions 6 main elementsNecessary but notsufficient conditions• Adequate resources•Size & TypeCoherence of organisational valuesand policies & a mission that puts quality of lifeof service-users at the core of all its actionsOrganisational leadership policies and proceduresService characteristicsStaff trainingStaff characteristicsAn informal culture that iscongruent with and supportsthe formal mission of theorganisationService user characteristicsOrganisational and staffpractices that compensateas far as possible forinherently disadvantageouscharacteristics of residentsStaff and managerialworking practices thatreflect organisationalvalues and policies andthe principles of active supportAn external environment that iscongruent and reinforces themission and values of theorganisation
Challenges for the FutureReduce variability in group homes models – adopt strong clear practice frameworksAttention on micro level practice Development of core practice frameworks – the Way we Work combining person centredapproaches rather than disaggregating Value and recognition of skilled practice – empathy is not enough• Individualism and growth of dedifferentiation – loss of specialist knowledgeWhole of organisational approach diverse programs and service usersUse of Active Support across settings and service types – as indivdualised support morecommon (revisiting Saxby et al., 1986 - convivial encounters)Organisation of practice leadership – dispersed individual settings – unbundle fromadministrative tasksPolitical 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 centredplanning or this way or that way which require strategic direction of public authorities inother domains.
51Contact email@example.comResourcesRaising our sights services for adults with profound intellectual and multipledisabilities : a report / by Jim Mansell. Vidoeshttp://webarchive.nationalarchives.gov.uk/+/www.dh.gov.uk/en/MediaCentre/Media/DH_117967http://www.kent.ac.uk/tizard/news/Raising_our_sights_video.html
52連絡信箱 : firstname.lastname@example.org參考資源Raising our sights services for adults with profound intellectual and multipledisabilities : a report / by Jim Mansell. Vidoeshttp://webarchive.nationalarchives.gov.uk/+/www.dh.gov.uk/en/MediaCentre/Media/DH_117967http://www.kent.ac.uk/tizard/news/Raising_our_sights_video.html
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