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InquiryintoSocialInclusionforVictorianswithaDisability Submittedby: AssociateProfessorErinWilson,SchoolofHealthandSocialDevelopment,Deakin University. Contact: [email protected] DeakinUniversity,221BurwoodHwy,Burwood,3125. 0392446158 Date: 28February2014 Introduction ThissubmissionrepresentstheviewsofErinWilson,AssociateProfessorinDisability,inmycapacityasa professionaleducatorandresearcherinthefieldofdisabilityandinclusion.Ithasnothadthe opportunitytobeendorsedbytheUniversityproper,orbyotherorganisationsandindividualshave collaboratedintheresearchlistedbelow.Thefollowinginformationisacompilationofexcerptsfrom existingresearchwork,conductedbymyselfandothers.Thisworkhasfrequentlybeencollaboratively undertakenwiththedisabilityserviceprovider,Scope,someofwhichisalsoreferencedintheir submissiontotheInquiryandacopyofthebelowwasprovidedtoScopetobeusedintheirsubmission development.Theworkrepresentsalmostadecadeofresearchactivityinrelationtothesocialinclusion ofpeoplewithadisabilityinVictoria(andwider). ThesubmissionislaidoutinrelationtoeachToR.Itprovidesasetofdirecttextexcerpts,usuallytaken frompublicationslistedbelow,orsummariesofrelevantdata.Inmanyinstances,asinglepublicationor pieceofresearchprovidesdataandfindingsrelevanttomultipleToRs.Intheseinstances,thereference isrepeatedandtherelevantdataprovidedinrelationtoeachToR. ItshouldalsobenotedthatDeakinUniversityismakingasignificantcontributiontotheskillingof professionalsintheareaofdisabilityinclusion.Thoughthisafeatureofmanycoursesandprograms,itis aparticularfocusoftheBachelorofHealthSciences,anditsmajorpathway'People,Societyand Disability'.Thismajorpathwaycomprisessixundergraduateunits,twoateachofthethreeyearlevels. Theseunitsdevelopskillsandknowledgeinrelationtodisabilityandpracticesthatfosterinclusion.In thepastseveralyears,thepathwayhasseenasignificantexpansioninenrolments,includingfrom studentsfromarangeofprofessionalareasincludingnursing,psychology,occupationaltherapy, education,arts,management,socialwork,amongothers.Thisisapositivestepinequipping professionalsfromalldisciplineareastohavetheskillsandknowledgetoincludepeoplewithdisabilities bothascolleagues(intheirworkplaces)andclients(ofprofessionalservices).(Forfurtherinformation: thepathwayiscoordinatedbyAssocProfessorErinWilson.) FurtherinformationcanbeobtainedfromAProfErinWilsonbyemail:[email protected] DeakinUniversityAProfErinWilson Page1of43 a)define'socialinclusion'forVictorianswithadisability Relatedpoints: 3.2Howshould'socialinclusion'forVictorianswithadisabilitybedefined? 3.3Whatisthedifferencebetweentheconceptsof'socialinclusion'and'participation'inthecontextof peoplewithadisability? 3.4WhatdoessocialinclusionforVictorianswithadisabilitylooklikenow? Jenkin,E.&Wilson,E.(2009).Inclusion:makingithappen.Keyelementsfordisabilityorganisations tofacilitateinclusion.Melbourne:Scope(Vic). Excerpts: Thisresearchprojectlookedattheroleofdisabilityorganisationsinworkingtogetherwithpeoplewith a disability, families and communities to foster inclusion and investigates how disability organisations canenhancetheirfunctioninfacilitatinginclusion. Specifically,theprojectaimedto: 1. Providecleardefinitionsandexamplesofwhatismeantbytermsassociatedwiththiswork suchas‘community’,‘participation’,and‘inclusion’; 2. Identify the key factors, enablers and barriers (that occurred at an individual, family, communityandorganisationallevel)toconnectingindividualisedandpersoncentredwork withinclusion; 3. Identify the changes or outcomes (that occurred at an individual, family, community and organisationallevel)asaresultofaselectedsampleofthiswork;and 4. Identifythekeyorganisationaltasksoringredientsneededtoenhancethiswork. Theresearchinvolvedarangeofmethodsincludingreviewingexistingliteraturelargelyfromthefields of disability and community development, as well as grey or organisational literature within disability organisations who participated as part of the project; and analysing evidence from 17 interviews conducted with inclusion workers (8 in Victoria, and 9 in WA). Interviews were conducted with key informantscurrentlyinvolvedininclusionworkfromwithinavarietyofservicetypes(e.g.dayservices, residentialservices,communitydevelopmentactivity,specialistserviceswork). Forthepurposesofthisstudy,inclusionworkisdefinedinthefollowingway: Inclusionworkinvolvessupportingpeopletoachieve,doandbeinlifeinthewaystheychoose andidentifyingandremovingbarrierstothisinsociety,servicesandindividuals. This research proposes three Orientations as a helpful way to understand the ‘what’ of inclusion practice. DeakinUniversityAProfErinWilson Page2of43 Orientation1:Individualpersoncentredworkleadstoinclusion. Inclusionworkandcommunitybuildinghappenindirectresponsetotheexpressedinterests,needs, andaspirationsofspecificpeoplewithadisability. Orientation2:Opportunitiesarecreatedincommunity. Inclusion work and community building require workers to be proactive in identifying, creating and offeringopportunitiestopeoplewithadisability. Orientation3:Broadlevelcommunitychange. Inclusionandcommunitybuildingfocusonbroaderstructuralandattitudinalwork. InclusionisabroadscaleactivitythatrequiresthecombinedfocusofOrientations1,2and3inorderto ensurethatbarrierstoinclusionareremovedatalllevels. Thestudypresentssomeexamplesofhowdifferentagencieshavestructuredtheirinclusionwork.The researchteamhasattemptedtocapturecommonalitiesinorganisationalapproachandhaveidentified threemaingroupings: x Singlefocuswork:Anagencyorganisesinclusionworkaroundindividualpeoplewithadisability andtheirfamilies,ORaroundasinglefieldofactivity/interest(egrecreation); x Broad regional work: An agency organises the work around a geographic region, or a set of broadersystemiccommunitydevelopmentorcapacitybuildingprojects; x Service redesign: where agencies have reconstructed their entire organisation in order to providemoreindividualisedsupporttopeoplewithadisabilityorfocusoninclusionindifferent ways. Intermsofpersonnelrequirements,inclusionworkinvolvesabroadrangeofjobrolesandpractitioners needtobegeneralistsacrossthese.Allinclusionworkisunderpinnedbyasetofpracticeprinciplesthat ensuretheworkmatchesitspurposeandisethical.Theliteratureofcommunitydevelopmentishelpful indelineatingtheskillsandstrategiesassociatedwithinclusionwork. Draftpaper:Wilson,E.;Campain,R.;Hagiliassis,N.;Caldwell,M.;McGillivrary,J.;Bink,M.;Graffam, J.(indraft).'The1in4projectmeasuringsocialexclusion.Anoutlineoftheoryandmethod'(Yetto besubmittedforpublication) Thefirst'1in4Poll'focusedonsocialinclusion.Tothisend,aliteraturereviewwasconductedto investigatetheconceptofsocialinclusionandhowtooperationalisethisinadatacollectionmethod. Researchersarecurrentlyproducingseveralpublicationsonboththeliteraturereviewanddevelopment ofmethod,aswellasthefindingsinrelationtothis1in4pollonsocialinclusion.Ashortexplanation (extractfromdraftpaper)isprovidedbelowtodiscusstheconceptofsocialinclusionasitwasadopted forthe1in4poll. DeakinUniversityAProfErinWilson Page3of43 Excerpts: Attheoutset,itiswelldocumentedthatthereislittleagreementaboutthedefinitionofsocial exclusion(Hayesetal,2008;Saundersetal,2007).The'workingdefinition'proposedbyLevitasetal (2007:9),andhighlightedbyAustralianresearchers(Saundersatal2007:12;Hayes,2008:5),isauseful startingpoint: 'Socialexclusionisacomplexandmultidimensionalprocess.Itinvolvesthelackordenialof resources,rights,goodsandservices,andtheinabilitytoparticipateinthenormal relationshipsandactivities,availabletothemajorityofpeopleinsociety,whetherin economic,social,culturalorpoliticalarenas.Itaffectsboththequalityoflifeifindividuals andtheequityandcohesionofsocietyasawhole(Levitasetal.,2007,p.9quotedin Saundersetal,2007,p.12,andHayesetal,2008,p.5). Inasimilarvein,summarisingarangeofdefinitionsfromtheU.K.,U.S.A.andAustralia,Hayesstatesthat keycharacteristicsinthedefinitionsofsocialexclusion‘involverestrictionofaccesstoopportunitiesand limitationsofthecapabilitiestocapitalizeonthese,alongwithreferencetothesocialandeconomic dimensionsofexclusion’(2008:6).ThissetofideasisagainrepeatedbyAustralianresearchersSaunders andWong(2009)whoarguethatthe'socialexclusionframeworkshiftsthefocusawayfromtheroleof resourceconstraints(importantthosetheseoftenare)ontotheotherfactorsthatcanpreventpeople fromparticipatinginvariousformsofsocial,economicandpoliticalactivity’(p.11).Saundersand colleaguesdiscusstheexplorationofsocialexclusionasidentifyingthe'factorsthatrestrictpeople's abilitytoacquiretheitemsandparticipateintheactivitiesthatarewidelyregardedasessentialforfull membershipofsociety'(Saundersetal,2007:2). Thisdefinitioncapturesthreeelementscommontomanydefinitions: 1. adenialofasetofresources(goods,services,rights); 2. alackofparticipationinarangeofnormreferencedsocial,economicandotheractivities;and 3. thenotionsofinterconnectionbetweenelementsofsocialexclusion,andtheimplicationof factorsthatpreventsocialinclusion. Eachoftheseelementsisdefinedvariouslybydifferentauthorsandresearchersindifferentcountries andcontexts. Denialofasetofaresources Variousdefinitionsofsocialexclusionengagewithconceptsofpoverty,inadequateincome,income inequality,impoverishment(asabroadernotion),consumptionanddeprivation.Duetothedefinitional andoperationalissuesofusingpovertyasanindicatorofdisadvantage,therelatednotionof deprivationhasbeenutilisedinthisarenaandasacomponentofsocialexclusion.Deprivationisdefined as‘anenforcedlackofsociallyperceivednecessities(oressentials)’(MackandLansley,1985:35,quoted inSaundersetal,2007:10),andislinkedtothenotionof'missingout'asopposedtobeing'leftout'as relatedtothenotionofsocialexclusion(Saundersetal,2007,vii).Thefirststepindefiningdeprivation, DeakinUniversityAProfErinWilson Page4of43 asexplainedbySaundersetal(2007),istoidentify'whatconstitutesessentialitemsthingsthatnoone shouldhavetogowithoutinAustraliatoday'(viii).Followingthis,deprivationis'measuredbyidentifying thosewhodonothaveandcannotafford'theessentialitems(Saundersetal,2007:ix).Thiscaptures thedefinitionalcriteriaofdeprivationthatthosewhodonothavetheitemslackthemasaresultofa lackofresourcesratherthanchoice(Saundersetal,2007:10).Saundersetal(2007)identifytenitemsof deprivation(ieidentifiedasessentialandlinkedtoaffordability)rankedmosthighlybyrespondents. Theseare: o medicaltreatmentifneeded o warmclothesandbedddingifit'scold o asubstantialdailymeal o abletobuyprescribedmedicines o dentaltreatmentifneeded o adecentandsecurehome o schoolactivities/outingsforchildren o annualdentalcheckupforchildren o ahobbyorleisureactivityforchildren o aroofandguttersthatdon'tleak(Saundersetal,2007:52). Lackofparticipationinarangeofnormreferencedsocial,economicandotheractivities Theconceptofparticipationappearstobecommonacrossarangeofdefinitionsofsocialexclusion. Burchardtetal(2002)statesthat'Anindividualissociallyexcludedifheorshedoesnotparticipatein keyactivitiesinthesocietyinwhichheorshelives'(Burchardt,LeGrandandPiachaud,2002,p.30 quotedinSaundersetal2007,p.13,Hayesetal,2008,p.5).Buildingonthisdefinition,Saundersand Wong(2009)alignsocialexclusionwith'beingdeniedtheopportunitytoparticipateinactivitiesthatare commonplaceorcustomaryinsociety'(Saunders&Wong,2009:12). Earlierdiscussionhassuggestedthatthelocusof'activities'ofparticipationisvaried,givenitisbasedon thosecustomarytoorvaluedbysociety,andcouldinclude'economic,social,culturalorpoliticalarenas' asidentifiedbyLevitasetal(p.9quotedinSaundersetal,2007,p.12).Differentauthorsand researchersincludeandomitdifferentarenasofparticipationfromtheirunderstandingorfocuson socialexclusion.Forexample,Burchardtetal(2002)intheCASEdefinitionofsocialexclusioninclude: Production(alsomentionedaboveashavingrelevancetodefinitionsofpovertyanddeprivation) participationineconomicallyorsociallyvaluedactivities;Politicalengagementinvolvementinlocalor nationaldecisionmaking;andSocialinteractionintegrationwithfamily,friendsandcommunity.The PSESurveyincludedasomewhatdifferent,thoughoverlappingrangeofparticipationarenas:labour DeakinUniversityAProfErinWilson Page5of43 marketexclusion;serviceexclusion,whereservicesencompasspublictransport,playfacilitiesand youthclubs,andbasicservicesinsidethehome(gas,electricity,water,telephone);andexclusionfrom socialrelationswhichincludes: x nonparticipationincommonactivities(definedasbeingregardedasessentialbyamajorityofthe population); x theextentandqualityofsocialnetworks; x supportavailableinnormaltimesandintimesofcrisis; x disengagementfrompoliticalandcivicactivity;and x confinement,resultingfromfearofcrime,disabilityorotherfactors(Hayesetal,2008:7,Saunders etal,2007;Palmer,MacInnesandKenway,2006;Parekhetal,2010). ManyofthesetopicshavealsobeencanvassedinAustralianBureauofStatisticsgeneralpopulation surveyingincluding:familyandcommunityinvolvement,crimeandfeelingsofsafety;attendanceat cultureandleisurevenues;sportsattendanceandparticipation;socialnetworksandsocialparticipation; aswellasparticipationineducationandemployment;anduseofinternettechnologies(ABS,GSS, 2010).DatainrelationtoAustralianswithdisabilityisavailableinrelationtothesecategoriesina compilationreportbytheABS(2011)SocialParticipationofPeoplewithaDisability2011,whichcollates datafromtheSurveyofDisability,AgeingandCarers(ABS,2009),GeneralSocialSurvey(ABS2006),and theTimeUsSurvey(ABS,2006).Whilenotexplicitlyreportingonsocialexclusion,theoverlapof conceptualareasisnotable,andhasbeenusedtoinformsocialexclusionresearch(egSaundersetal, 2007). Threearenasofparticipationreceivingrepeatedfocusinsocialexclusionresearcharethoseof economicparticipationorexclusion;serviceexclusion;andsocialexclusion.Thisisnottosuggestthat otherarenassuchaspoliticalorcultural(orindeedotherarenasoflifesuchasspiritualorreligious participation)donotwarrantequalattention,theyhavesimplynotreceivedittodatewithinthe contextofexplicitsocialexclusionstudies,particularlyinAustralia. Theinterconnectionbetweenelementsofsocialexclusion Manyauthorsidentifytheroleofsocietyincreatingsocialexclusion.AsexplainedbySaundersetal, 'Unlikethefocusofpovertyonasingledimension(lackofresources),exclusionisamultidimensional concept,designedtohighlighttheroleofinstitutionalstructuresandcommunityattitudesincreating thebarriersthatleadtoexclusion,theroleandnatureofvoluntaryaswellasenforcedexclusionor withdrawal,theimportanceofrelationalissues,thedenialofsocialrights,andtheimportanceofthe familyandcommunitycontextinshapingexclusionattheindividuallevel'(Saundersetal,2007:1213). Atkinson(1998,citedinSaundersetal,2007:11)arguedthatoneofthecoreideasofsocialexclusionis thatofagency,'theideathatpeopleareexcludedbychoicesoftheirown,orbytheactsofothers' (Saundersetal,2007:11).TheseideasarelinkedtoSen's(2001)analysisofsocialexclusionwhoargues thatacorefeatureisthe'relationalfeaturesofthedeprivationofcapability'(Sen,2001:6,quotedin DeakinUniversityAProfErinWilson Page6of43 Saundersetal,2007:11).AmartyaSenhasexploredthecomplexityofcomparativeassessmentofsocial equality,socialjusticeandqualityoflifeandproposedtheconceptof'capabilities',or'whatpeopleare actuallyabletodoandtobe'(Nussbaum,2003:33).Senrecognisesgreatdiversityinthehuman conditionandthatindividualsbothrequiredifferinglevelsofresourcesaswellashave'differingabilities toconvertactualresourcesintofunctioning'(Nussbaum,2003:25).AnoftencitedexampleusedbySen isthatofthepersoninawheelchairwhowillrequiremoreresourcesformobilitythanapersonwhois notsimilarlyimpairedinordertoachievethesameabilitytomovearound(Nussbaum2003:35).He arguesthatthisfocushighlightsthebarrierspreventingtheactualisingofresourcesorrights.Sen's conceptoverlapswiththatofhumanrights,inthatheseesrightsasbeingenabledorpresentonly'if thereareeffectivemeasurestomakepeopletrulycapable...'(Nussbaum,2003:38).Thisplaces responsibilitywithsocietyandthestatetotakeactionand'tothinkfromthestartaboutwhatobstacles therearetofullandeffectiveempowermentforallcitizens,andtodevisemeasuresthataddressthese obstacles'(Nussbaum,2003:39).Thissetofunderstandingshassignificantresonancewiththesocial modelofdisabilitythatnowunderpinstheUnitedNationsConventionontheRightsofPersonwith Disabilities.AsarguedbyNavanethemPillay,UNHighCommissionerforHumanRights,'theConvention viewsdisabilityasa‘pathologyofsociety’,thatis,astheresultofthefailureofsocietiestobeinclusive andtoaccommodateindividualdifferences'(OfficeoftheCommissionerforHumanRights(2010) MonitoringtheConventionontheRightsofPersonswithDisabilities.GuidanceforHumanRights Monitors.ProfessionaltrainingseriesNo.17.NewYork&Geneva:UnitedNations,p.05.). ThisliteraturesetandsuiteofconceptsunderpinnedthedevelopmentoftheDeakinUniversityand Scope'1in4Poll'onSocialInclusion.ThepollsurveyedadultswithadisabilityinAustraliainregardto theircurrentlevelofsocialinclusion.ThesurveydrewonthedomainsoftheSocialInclusionframework usedbySaundersetal(2007&2008)andaddedsubdomainstothese,asfollows: – – – Socialexclusion(Disengagement)e.g.feelpartofthecommunity • Socialcontact • Participation • Groupmembership • Support • Feelingvaluedandbelonging • Outlook(forthefuture) Serviceexclusione.g.accesstomedicalservices • Medical • Disability • Publicfacilities Economicexclusione.g.havingenoughmoneytogetbyon DeakinUniversityAProfErinWilson Page7of43 • Assets • Essentialelements Questionitemswereselectedandadaptedfromarangeofpublishedsources(over80itemsidentified inmultiplestudies)(Moore,M.;Hagiliassis,N.;McGillivray,J.;Wilson,E.;Campain,R.;Graffam,J.& Bink,M.(2010).MeasuringsocialinclusionofpeoplewithadisabilityinAustralia:thefirstnational1in 4poll.45thAnnualASSIDAustralasianConference,Brisbane,September2010).Thisapproachdidnot includeareferencetothepoliticaldomainofsocialinclusion,asthishadbeenpreviouslyresearchedby Scopeinapreviouspoll.Futurepollsonsocialinclusionwouldrectifythisexclusion. Inadditiontoitemsrelatingtomeasuringsocialinclusion,literaturewasreviewedtoidentifiedthe knownbarrierstosocialinclusionforpeoplewithadisability.Thisdatawasusedtogenerateafurther surveyquestioninrelationtothethingsthatwouldmostimprovesocialinclusioniftheywerechanged. Barriersidentifiedincluded: x attitudesofothers x physicalaccesstoplaces x othersbeingabletounderstandthewayIcommunicate x transport x lessrulesandredtape x beinglistenedto x feelingsafer x servicesandsupports x money x betterhealth x housing x aidsandequipment x optionstodowhatisdesired x peopletodothingswith x selfesteem/selfimage x employment x accessibleinformation(Moore,M.;Hagiliassis,N.;McGillivray,J.;Wilson,E.;Campain,R.; Graffam,J.&Bink,M.(2010).MeasuringsocialinclusionofpeoplewithadisabilityinAustralia: DeakinUniversityAProfErinWilson Page8of43 thefirstnational1in4poll.45thAnnualASSIDAustralasianConference,Brisbane,September 2010). Tan,BoonSiong(2013)Whatarethenegativeattitudesexperiencedbypeoplewithdisabilityin Australia,anddotheydifferaccordingtodisabilitytypeorseverityofdisability?HonoursThesis, SchoolofHealthandSocialDevelopment,DeakinUniversity(SupervisedbyAProfEWilsonanDrK Murfitt). Excerpts: Background PeoplewithadisabilityinAustraliahaveidentifiednegativesocietalattitudesasthemostprevalent issueaffectingcommunityinclusionandaccesstohealthcareandservices.Developingabetter understandingoftheseattitudesiscriticaltotargetingchangestrategiestoaddresstheseattitudinal barriers. Aim&ResearchQuestion(s) Thestudyaimedtoinvestigateexperiencesofnegativeattitudeasreportedbyadultswithadisabilityin Australia.Thestudysoughttodetermine(1)whatnegativeattitudesareexperiencedbyadultswith disabilitywithinAustralia,(2)whethernegativeattitudesexperiencedbypeoplewithdisabilitydiffer accordingtodisabilitytypes,and(3)whethertheseverityofdisabilityhasanimpactonperceived negativeattitudesexperiencedbypeoplewithdisability. Participants Atotalof539adultswitharangeofdisabilitiesrespondedtothesurvey;howeveronly472responses wereanalysed.(NOTE:thisincluded39%fromVictoria). Method Thecurrentresearchwaspartofalargerstudycalledthe‘1in4Poll’whichwasdevelopedbyDeakin andScope,andinvestigatednegativeattitudesexperiencedbypeoplewithdisability.Quantitative methodswereengagedinthisstudy.Threeprimarystatisticalanalyseswereconductedcomparingthe independentvariables(1)disabilitygroupsand(2)severityofdisabilityagainstthenegativeattitudes reportedbypeoplewithdisability.Factoranalysiswasalsoconductedtodeterminewhetherspecific factorswouldrevealageneraltrendinwhichcertainnegativeattitudescorrelatetogether. Discussion Inthisstudy,lackofknowledgeaboutdisabilitywasarecurringthemeidentifiedbypeoplewith disability.Factoranalysisrevealedthatknowledgeasafactorcausedthegreatestdegreeofdifficulties topeoplewithdisability.Additionally,fourofthesevenmostfrequentlyexperiencednegativeattitude itemswererelatedtothefactorofknowledge,with69%ormoreofpeoplewithdisabilityreportingthat theyexperiencedthesefournegativeattitudeswithinthepastyearalone.Over84%ofrespondentshad DeakinUniversityAProfErinWilson Page9of43 experiencednegativeattitudesinrelationtotheitemaboutlackofknowledgeandunderstandingof disabilityoverthepastyear.Furthermore,lackofknowledgeandunderstandingofaperson’sdisability wasalsoreportedtocausepeoplewithdisabilitythegreatestdegreeofdifficulty.Inadditionwithinthe knowledgefactor,71%ofrespondentsexperiencedgreatdifficultywithpeoplenotbelievingtheextent ofdisability.Additionally,thisattitudecausedthesecondgreatestimpactcausedtopeoplewith disability,behindlackofknowledgeandunderstanding.Furthermore,morethan69%ofpeoplewith disabilityfeltthatthepublicdidnotknowhowtobehavearoundthemandtendednottolistentoor ignoredthem.Therefore,lackofknowledgeandawarenessofdisabilityappearstobecausingagreat degreeofdifficultyonthelivesofpeoplewithdisability.Thisresonateswithpaststudiesthathave reportedthatthelackofknowledgehasbeenfoundtoresultinfearanduncertaintyabouthowto interactandengagewithpeoplewithdisability(Deane,2009;Grewaletal.,2002;Hunt&Hunt,2004; Stanlland,2009). Withinthefactorofcompetency,thecurrentstudyfoundthatpeoplewithdisabilityreportedly experiencedrelativelyhighfrequenciesofnegativeattitudesinrelationtocapabilities.Over69%of respondentsreportedlyexperiencedinstanceswherepeopletreatedpeoplewithdisabilityasless intelligentandincapableofmakingdecisions.Thesetwonegativeattitudeitemswerewithinthetopfive mostfrequentlyexperiencednegativeattitudeitems.Furthermorerespondentsexperiencedinstances wherepeopletreatedthemmorelikeachildthananadultandthatthepublicassumedthatthey couldn’tthinkortalkforthemselves.Thenotionthatpeoplewithdisabilityarelesscapableand competentunderminespeople’sabilitytoseepeoplewithdisabilityasautonomousindividuals; suggestingthatthepublicviewspeoplewithdisabilityasneedingtobelookedafterandunableto performtasksormakedecisionsascomparedtopeoplewithoutadisability.Similarfindingswerenoted withintheliterature(Grewaletal.,2002;Stanlland,2009). Lastlywithinthefactorofhostility,itappearsthatnegativeattitudeitemsinrelationtobullyingand violentbehaviourswererelativelylow.Theresultssuggestthatnegativeattitudesinrelationtobullying andviolentbehaviourswerenotascommonlyexperienced.Hostilityasafactorcomprisedofthethree leastexperiencednegativeattitudeitems,includingattitudesinrelationtobullyingandviolent behavioursalongwithnotbeingwelcomedinthepublic.However,despitethiscomparativelower frequency,thecurrentstudyrevealedthatover34%andalmost50%ofrespondentsstillreported havingexperiencedviolentandbullyingbehavioursrespectively,indicatingthatthereisstillasizeable proportionofpeoplewithdisability(i.e.oneinthree)experiencingprejudicialbehavioursineveryday life. Thecurrentstudydepictsthatindeedpeoplewithadisabilityfrequentlyexperiencenegativeattitudes. Ofthetwentynegativeattitudeitemstestedinthisstudy,seventeenofthemhadafrequencyof50%or higheramongtherespondentpopulation.Thistranslatestooneintwopeoplewithdisabilityreportedly experiencingnegativeattitudesatleastonceinthepastyearalone. NegativeAttitudesbyDisabilityGroup Themajorityofstudiestodatehaveevidencedmorenegativeattitudestowardspeoplewithintellectual DeakinUniversityAProfErinWilson Page10of43 disabilitiesascomparedtothosewithphysicaldisabilities(Caldwell,2007;Harasymiw&Horne,1976; Scior,2011;Stanlland,2009;Thompsonetal.,2011;TurKaspa,Weisel&Most,2000;White&Clark, 2010).Howeverrelativelyfewstudieshavelookedintocomparingnegativeattitudesbetweendisability groupsoutsideofintellectualandphysical.Thecurrentstudyexpandsonthelimitedstudieswithinthe literaturebyrecruitingpeoplewitharangeofdisabilities.Thecurrentstudysupportstheevidencein relationtomorenegativeattitudesexperiencedbypeoplewithintellectual/learningdisabilities comparedtopeoplewithaphysical/diversedisability,andaddsnewdataonthehierarchyofattitudes towardsdisabilityincludingsensory/speechandpsychiatricdisability.Additionally,thecurrentstudy identifiesdifferencesintypesofattitudesexperiencedbypeoplewithdifferentdisabilities. Resultsfromthecurrentstudyrevealedthatattitudesoverallexperiencedbypeoplewithdisabilitywere negative;howeverthereweredifferencesreportedacrossdifferentdisabilitygroups.Forinstance,for thedataresultinginsignificantdifferences,peoplewithanintellectual/learningdisabilityexperienceda greaterdegreeofnegativeattitudesascomparedtopeoplewithphysical/diversedisability.Thiswas especiallyapparentinrelationtothepublic’sexpectationsofthecapabilitiesofpeoplewithdisabilityin formingrelationshipsandinbeingtreatedlikeachild.Furthermoreitseemsthatpeoplewithpsychiatric disabilityalsoexperiencedgreaterdifficultyfromnegativeattitudesinrelationtothepublic’s expectationofpeoplewithdisabilityformingcloserelationshipscomparedtopeoplewith physical/diversedisability.Similarly,itwasfoundthatpeoplewithpsychiatricdisabilityexperienced moredifficultywiththenegativeattitudesinrelationtothepublic’sbeliefoftheextentofdisability comparedtopeoplewithphysical/diverseandpeoplewithintellectual/learning.Thusitmayseemthat differencesinnegativeattitudesexperiencedbypeoplewithvaryingdisabilitymaybedependentonthe negativeattitudetheme. Furtheranalysisusingthethreefactorsofcompetency,knowledgeandhostility,foundthatonlyunder thefactorofhostilitywerepeoplewithintellectual/learningdisabilityandpeoplewithpsychiatric disabilityexperiencingmoredifficultycomparedtootherdisabilitygroups.Furtheranalysisrevealed thatpeoplewithsensory/speechdisabilityhadexperiencedsignificantlymoredifficultywithviolentand bullyingbehaviourscomparedtopeoplewithanintellectual/learningandpeoplewithpsychiatric disability.Howeverthesamewasnotfoundwithinthefactorofcompetencyandknowledge,indicating thatregardlessofdisabilitygroup,peopleexperiencednegativeattitudesinrelationtocompetencyand knowledgetoasimilardegree,andtheseattitudescausedthegreatestdegreeofdifficultytopeople withdisability. Oneexplanationforthesedivergentattitudestowardsdifferentgroupsofdisabilityisthatahierarchy seemstoexistwitharankorderingofthemostacceptedtoleastaccepteddisabilitytype(Deal,2006).It wasfound,asproposedbyHarasymiw&Horne(19760,thatanimpairmentthatconformsmostclosely tothenormssetbysocietywouldbemoreaccepted. Arelatedexplanationforthishierarchyofdisabilitymaybeduetothevisibilityofdisability.Grewaletal. (2002)suggestthatpeoplemaybemoreimmediatelyawareofapersonwithmorevisibledisabilities suchasphysical,visionandcommunicationdisabilitiesandbemorewillingtohelpout.However,in DeakinUniversityAProfErinWilson Page11of43 relationtopeoplewithnonvisibledisabilities,suchasintellectual/learningdisabilitiespsychiatric disabilities,peoplemaynottakeaccountoftheirimpairmentandmaynotimmediatelynoticethat thesepeoplehaveadisabilityandbelesswillingtolendahelpinghand(Grewaletal.,2002).The literaturesuggeststhatwhennoclearphysicalsymptomsarepresent,thepublicareoftenscepticaland overtlydismissiveandwillquestiontheveracityandreliabilityofthepersonwithaninvisibledisability (Davis,2005) Overall,whilethisstudyconfirmspreviousstudiesshowingattitudestobemorenegativetowards peoplewithintellectual/learningandpsychiatricdisabilities,thesituationappearstobemorecomplex thanthisfindingsuggests.Differentdisabilitygroupsexperiencehigherfrequenciesandgreater difficultyinrelationtospecificattitudeitems.Thedetailsofthisstudyoffersomespecificdirectionsfor attitudechangeprogramsinrelationtoeachgroup,andoverallsuggestthatsuchactivitiesneedto betterunderstandthedifferentialexperienceofattitudesdependentondisabilitytype. NegativeAttitudesbySeverityofDisability Thecurrentstudyisonlyoneofasmallnumberofstudiestoinvestigatenegativeattitudesexperienced bypeoplewithdisabilityaccordingtomultipledifferentseveritylevels.Ofthestudiesconducted,results indicatethatpeoplewithgreaterseverityofdisabilityhadexperiencedgreaternegativeattitudesthan comparedtopeoplewithlesserseverity(Hannon,2009;Scior,2011).Thecurrentstudyinvestigated negativeattitudesexperiencedacrossmultiplelevelsofseverity,andaddsnewdatatothisfield. Thecurrentstudydemonstratedthatsignificantdifferenceexistedindifficultiescausedbynegative attitudesaccordingtoseveritylevel.Acrossallnegativeattitudeitems,peoplewithamildlevelof disabilityhadexperiencedsignificantlylessdifficultywithnegativeattitudescomparedtopeoplewith profound,severeandmoderateseveritylevel.Inaddition,factoranalysisrevealedsignificant differencesbetweenseveritylevelsalongthethreefactorsofcompetence,knowledgeandhostility.In general,peoplewithagreaterlevelofseverityexperiencedmorenegativeattitudesacrossallfactorsof competency,knowledgeandhostility.Onepossibleexplanationisthatwhenaperson’sfunctioningor biologicalcompositiondoesnotfallwithinthe‘normal’standards,theyaresaidtobeinferiorandare oftensubjectedtorejectionandsocialexclusionwithinsociety(Hannon,2009).Aspeoplewithprofound disabilityaredefinedasrequiringassistancewithoneormorecoreactivitytasks(ABS,2009),itmaybe thatwhenthefunctioningofanindividualfallsfurtherfromwhatseemstofitwithinthenormal standardsofsociety,theytendtobesubjectedtomorenegativesocietalattitudes.Thusthereseemsto bedifferencesexperiencedbasedontheseverityofdisabilityaccordingtocoreactivitylimitations. b)identifythenatureandscaleofrelativeinclusion(exclusion)andparticipationofVictorianswitha disabilityintheeconomic,socialandcivildimensionsofsociety. Relatedpoints: 3.4WhatdoessocialinclusionforVictorianswithadisabilitylooklikenow? 4.1WhatarethebarrierstomeaningfulsocialinclusionforVictorianswithadisability? DeakinUniversityAProfErinWilson Page12of43 4.2InwhatwaysforVictorianswithadisabilityparticipateintheeconomic,socialandcivildimensions ofsociety? Layton,N;Colgan,S;Wilson,E;Moodie,M&Carter,R.(2010).TheEquippingInclusionStudies: AssistiveTechnologyUseandOutcomesinVictoria.Burwood:SchoolofHealthandSocial DevelopmentandDeakinHealthEconomics,DeakinUniversity. Excerpts: In 2008, the Victorian Aids and Equipment Alliance (AEAA) was awarded research funding from the WilliamBucklandFoundationtoundertakeresearchintoATprovisioninVictoria.TheAEAAfundedtwo studiesconductedbytwoteamsfromDeakinUniversity.Study1,TheEquipmentStudy,focusedonthe experience of 100 Victorian adults with a disability using AT and the impact of this in their lives. In particular,thestudysoughttoidentifytherangeofATused,thelifedomainsenabledbythisuse,and levels of difficulty, participation and satisfaction with current use. In addition, the study sought to identify AT required by participants and the impact this provision would have on life participation, difficultyandsatisfaction.Study2,TheEconomicStudy,hadtwocomponents:1)asystematicliterature review of the economic evaluation of AT interventions; and 2) an economic evaluation of the cost consequencesandcostutilityofoptimalATinterventionsbasedondatafromStudy1collectedfromthe subsetofeightindividuals. CurrentlevelofparticipationinlifeareasenabledbyAT The 100 participants in Study 1 used AT to participate in multiple life domains. All eight life domains (personal,social,economic,educational,cultural,political,recreation/leisure,spiritual)werepopulated with examples of AT use that enabled the involvement in life activities. Most respondents (94%) reported activity supported by AT devices in the Personal Well Being domain, followed by Social Life (80%), and Recreation and Leisure Life (73%). Elements of AT were repeatedly seen to be effective in more than one life domain. A number of respondents described the rationing of their participation basedoninsufficientAT. Constraintsonparticipation Most respondents identified difficulty levels of ‘moderate’ to ‘moderate to severe’ (34 on a 6 point scale) across life areas. The area of Personal Life evidenced the highest level of difficulty followed by RecreationalandLeisureLife,andCulturalLife. The100surveyrespondentsprovidedadetailedsetofqualitativedatathatuniformlyspoketolevelsof dissatisfaction and frustration with current participation levels. The eight case participants were also asked to rate their level of satisfaction with their participation in the life domains of their choice. Overall,participantsweredissatisfiedwiththeirparticipationlevelsinmorethanathird(39%)oftheir preferred life areas and activities, with some activities (5%) evidencing complete restriction of participation. DeakinUniversityAProfErinWilson Page13of43 IncreasingoutcomesthroughincreasedprovisionofATSolutions IdentificationofATthatwouldmeetindividuals’needs Overall,74%ofthe100surveyrespondentsidentifiedunmetneedforATsolutionstoachievetheirlife aspirations.Thesedesiredsolutionsincludedaidsandequipment(identifiedby70%ofrespondentsand includinguptonineadditional/alternativedevices),homemodifications(46%ofrespondents), environmentalmodificationsinthecommunity(52%ofrespondents)andpersonalcare(24%of respondents).ThemajorityofrespondentsappeartobetechnicallyeligibleforVictorianAidsand EquipmentProgram(VAEP)subsidygiventheirincomeandresidentialarrangements. Increasedparticipation Theeightcasestudyparticipantsidentifiedanincreaseinparticipationratesbetween0%and28%,with anaverageincreaseof12%asaresultofthehypotheticalprovisionofoptimalAT.Surveyrespondents anticipatedthattheprovisionofdesiredATwouldimproveparticipationinlifeareas,particularlyinthe areaofPersonalLife(for68% of respondents), in Social Life (48%),and inRecreationandLeisure Life (38%). Increasedsatisfactioninparticipation Theeightcasestudyparticipantsratedtheiranticipatedsatisfactionwithparticipationlevelsfollowing thehypotheticalprovisionofoptimalAT.Ratingsevidencedasignificantincreaseinsatisfactionranging from 8% to 33%, with an average of 19% satisfaction improvement. Not only did satisfaction levels improve, but participants rated more of their life activities as achieving moderate to high levels of satisfaction in regard to participation levels (74% compared with only 47% of life activities prior to optimalATsolution). Increasedhealthrelatedqualityoflife Seven of the eight case study participants rerated their quality of life following the hypothetical provisionoftheiroptimalATsolution.AllexceptoneparticipantevidencedincreasesinAQoLscorewith four showing gains of 10% or more, in a range between 4 33% improvement. This suggests that investmentinATwillreturngainsinqualityoflife. Costofchange Study 2 demonstrated that these improvements can be achieved at modest cost for many AT clients. Theincrementalcostofmovingtoanoptimalpackageofcarewassmallforhalfoftheparticipants(less than $6,200); moderate for two ($11,116; $14,370); and high for one participant ($29,534). In other words,fromagovernmentaffordabilityperspective,thechangetoanoptimalpackageofATforthese participantsdidnotentailanunrealisticamountofadditionalexpenditure. DeakinUniversityAProfErinWilson Page14of43 c)understandtheimpactofVictoriangovernmentservicesandinitiativesaimedatimprovinginclusion andparticipation. Relatedpoints: 4.4Howeffectivehaveawarenesscampaignsbeeninimprovingsocialinclusionforpeoplewitha disabilityinVictoria? 4.5Howcansocialinclusionandtheparticipationofpeopleinthecommunitybeeffectivelymeasured? 4.6Whattoolscanbeusedtodetermineiftherehavebeenimprovementsorchangesinthelevelsof socialinclusionforpeoplewithadisabilityovertime? 6.1HoweffectiveareservicesandinitiativesdesignedtoenhancethesocialinclusionofVictorianswith adisability? Kleeman, J. & Wilson, E. (2007). Seeing is believing: changing attitudes to disability. A review of disability awareness programs in Victoria and ways to progress outcome measurement for attitude change.Melbourne:Scope(Vic). Excerpts: This study was initiated by Scope in order to increase understanding of the evidence surrounding attitudechangeofcommunitymemberstowardspeoplewithadisability.Inrecognitionoftheexplicit roleofdisabilityawarenessprogramstodateasamechanismofattitudechange,thestudyalsoaimed tobroadlydeterminetheextentandtypeofdisabilityawarenessprogramsinVictoria,andtoassessthe outcomes of these. Finally, the study aimed to explore possible methods for better determining the outcomesofsuchprogramsintermsoftheireffectonattitudeandbehaviourchange. Within Victoria, thirteen programs were found to be currently conducting formal disability awareness programs.ThisincludedtheprogramsofelevenagenciesaswellasScope’stwocommunityawareness programs that are each designed for different target audiences. Each agency is a not for profit organisationwithafocusondisability. Themajorityofprogramsaredesignedforgeneralcommunitygroupsandschoolgroups.Schoolgroups consistofstudentsfrompreparatorytoyeartwelve,coveringalllevelsofschooling.Two(15%)ofthe programsconductedinVictoriaareaimedatspecificyearlevelsinschools. As well as school and community groups, some of the programs are directed towards other external organisations, specifically human relations and management departments, as well as employment agencies and health professionals. Two (15%) of the programs were directed at university students undertakingcoursessuchasnursingandmedicine. Itwasfoundthatbeyondraisinggeneralawarenessaboutpeoplewithdisabilitieswithinthe community,mostorganisationsdidnotclearlyarticulatethespecificintendedoutcomesoftheir programs. DeakinUniversityAProfErinWilson Page15of43 Intheabsenceofthisdata,researchersofthisprojectpostulatedaseriesofoutcomesthataimedto reflecttheintentionsdiscussedorobservedwithinprograms.Programintentionsandfocuswerethen assessedagainstthisframework,viathemechanismofdiscussionorobservation. Asdiscussedabove,researcherspostulatedfourmainoutcomegoalsthatanawarenessprogrammay worktowards.Theseintendedoutcomesareasfollows: Table1:DisabilityAwarenessProgramOutcomeFramework Outcome level Outcometheme Outcomedescription 1. Generalawareness Raisinggeneralawarenessthattherearepeople inthecommunitywhohavedisabilities.Raising disabilityfromaninvisibleindividualissuetoa visiblecommunityissue. 2. Understandingissues Learningwhattheneeds,issuesandexperiences peoplewithadisabilitymayhave. 3. Attainingspecific knowledgeandskills Fosteringtheskillstoaddresstheneedsof peoplewithadisability.Gainingtheknowledge andskillstoidentifystrategiesandactions.For exampledevelopingcommunicationskillsor understandingofcommunicationaids. 4. Takingaction Individualorgroupactionconcerningdisability issues,shownthroughobservedbehaviour change,policychangeorstructuralchange All(100%)ofthedisabilityawarenessprogramsanalysedinthisstudyinvolveintendedoutcomes1and 2:thatis,raisinggeneralawarenessofdisability;andlearningwhattheneeds,issuesandexperiences peoplewithadisabilitymayhave. Most(77%)oftheprogramsappeartoincludeaspectsofoutcome3:developingtheskillstoaddressthe needsandissuespeoplewithadisabilitymayface.Theseprogramsnotonlydiscusstheneedsand issuessurroundingpeoplewithdisabilities,butalsohowtoaddresstheseneedsandissues.For example,someoftheprogramsgoontodiscusslanguage,whatwordscanbeoffensiveandwhatwords aremoreappropriatetousewhencommunicatingwithapersonwithadisabilityorwhendiscussing disabilityissues.Asmallnumberofprogramsdiscusswaysinwhichdifferentpeoplecommunicateasa resultoftheirdisability.Throughtheseprograms,participantsgainknowledgeandskillsthatwould enablethemtobettercommunicatewithpeoplewitharangeofdisabilities.ForexampletheVictorian DeafSocietyteachesafewbasicAuslan(AustralianSignLanguage)signsthroughouttheirawareness DeakinUniversityAProfErinWilson Page16of43 course.Otherprogramsprovidespecificstrategiesforinteractingorworkingwithpeoplewitha disability. Threeprograms(23%)wereidentifiedashavingspecificbehaviourchangegoals.Theseprograms specificallynamebehaviourchangewithintheirprogramdescriptionsandplantheirprograms accordingly.TheDownSyndromeAssociationofVictoriaandLatrobeCityRuralAccessawareness programsbothdirecttheirprogramstohealthcareprofessionalsandstudents.Theseprogramshave theaimofencouragingashiftawayfromapuremedicalfocusthathealthprofessionalsmayhavewhen interactingwithpeoplewithdisabilities.Thesecoursesencouragehealthstaffandstudentstousemore appropriatelanguagewithpatientswhomayhavedisabilitiesaswellastheirfamilies.Theyopenly encouragebehaviourchangeofhealthprofessionalsandstudentstowardspeoplewithdisabilities, aspiringformoreaccessibleandinclusivehealthservices. Mostprogramshaveagenerallongtermgoalofcreatingamoreinclusivecommunitythroughpositive behaviourchangeofcommunitymemberstowardsallpeople,includingpeoplewithadisability.This generalintentionmakesthedistinctionbetweenoutcomelevels3and4somewhatdifficult.However, forthepurposesofthisanalysis,outcomelevel4isunderstoodtorequiretheinclusionofenacting behavioursinreallifecontextsaspartoftheprogram,ordeliberateandcontextspecificplanningtodo so.Withthisdefinitioninmind,onlytheScopeYoungAmbassador(SYA)program(ie.8%ofall programs)evidencesactivitytowardoutcomelevel4.Theprogramaimsforpositivebehaviourchange towardspeoplewithdisabilitiesamongtheparticipatingstudents.Theprogramintentionallyfocuseson enactingbehavioursthroughvariouslearningactivitiesthatrequirespecificstudentactionsinreallife contexts(suchasworkingcollaborativelywithpeoplewithadisabilityinaservice,work,orproject setting).Suchactivitieshavealsoresultedinsomestructuralchangethroughthecommunityservice componentoftheprogram.Forexample,agroupofstudentsparticipatingintheSYAprogramcreated a‘beachwheelchairhire’serviceatanumberoflocalcouncils,enablingbetteraccessforpeoplewith disabilitiestoMelbourne’sbeaches Thefocusonattitudechangethroughcollaborativeactivitybetweenpeoplewithandwithouta disabilityisconsistentwiththefindingsfromtheliterature,previouslydiscussed,thathighlightsthis approachtobekeytoattitudechange. Thisstudyidentifiesanumberofimportantconsiderationsfordisabilityawarenessprograms,interms ofwhatcanbeconsideredtobringabouteffectiveattitudechange.Thesearesummarisedinthe followingtable. Table2:Keyprogramingredientsforattitudechange 1. Contact Directcontactbetweenprogramparticipantsandpeoplewitha disabilityislikelytobethemostinfluentialformofattitudechange. Featuresofdirectcontactshouldinclude: x longevityofcontact(ie.asustainedperiodoftime); DeakinUniversityAProfErinWilson Page17of43 x theability/timetogettoknoweachother; x equalstatusofpeoplewithandwithoutadisability;and x afocusonthepersonwithadisabilityasconnectedwithand representativeofotherpeoplewithadisability; x mutualworkonsharedgoal; x positivesharedexperiences. 2. Longevity Programsthatarelongerindurationratherthanshort,oneoff activitiesallowtimeforattitudechangetobuildincrementally. 3. Action Programsneedtobefocusedonbehavioursincontextsthatthe participanthascontrolover,ie.theability,resources,skills,authority toenact.Thatis,afocusonactionstheparticipantcandointheir everydaycontext. 4. Experience Programsneedtobepersonallyinvolvingandexperiential,orat least,complementthetraditionalpersuasivemessageapproachwith elementsofthis. Additionally,thereissomeevidencetosuggestthatsomegroupsincommunitymayrequirea heightenedleveloffocusthanothers.Forexample,peopleover25years,peoplewithlowerlevelsof education,andpeoplewithoutpreviousexperienceofdisability,arealllikelytoholdmorenegative viewsofpeoplewithadisability(accordingtoresearchpublishedintheliterature). Atpresent,disabilityawarenessprogramsinVictoriaappeartofocusonwhatisdescribedinthis researchasthefirstandsecondlevelsofawareness:makingpeoplewithadisabilityvisible,ratherthan invisible;andunderstandingtheissuesfacingpeoplewithadisability(SeeTable1). Whilstmostprogramsincludeafocusongeneralskillsdevelopment,fewappeartofocusonbuilding specificskillsinspecificcontexts,andidentifyingclearactionorbehaviouralplans.TheDisability AwarenessProgramOutcomeFramework,developedbyresearchershere(Table1),couldbeauseful frameworkforprogramstoreviewtheiraimsby.Thisneedstobecoupledwithacurriculumand deliverystrategyconsistentwiththekeyprogramingredientsforattitudechange,listedinTable2. Outcomesframeworkandmeasurementresearch,ScopeandDeakinUniversity(summaryofsuiteof researchactivity) Summary: DeakinUniversityAProfErinWilson Page18of43 Researchers from Scope and Deakin University have been working for the past ten years on the developmentofan outcomes frameworkrelevantto capturethe outcomesofservicestosupport the desired life outcomes for people with disability. This work has generated an outcomes framework,initiallydrawingonnotionsofcitizenship,andtestedtoidentifyitsabilitytoadequately captureafullrangeoflifeoutcomesasidentifiedbytheUNCRPD.Theframeworkisbelow: PersonalLife: That is, in the area of health and function, happiness, wellbeing,safety,senseofindependenceandchoice. Sociallife: Thatis,intheareaoffriendshipandrelationship,community involvementandsenseofbelonging. Politicallife: Thatis,intheareaofhavingasayaboutthingsthataffectyou (eginalocalserviceorcommunitygroup,aboutyourarea, school,fundingetc). Culturallife: Thatis,beinginvolvedinculturalactivities(eg.arts,music, theatre,danceatanylevel).Thismightbethroughattending activitiesorplayinganactivepart.Orbeingpartofyourown culturalgroup. RecreationalandLeisurelife:Thatis,beinginvolvedinrecreationalorleisureactivitiesat anylevel.Thismightbethroughattendingactivities,playingan activepartordoingwhatyouenjoy. Economiclife: Thatisintermsofyourfinances,employmentorbusiness. Educationallife: Thatis,anyaspectofyoureducation,training,personalor professionaldevelopment Spirituallife: Thatis,anyaspectofyourreligiousorspiritualactivities. YourEnvironment: Thatis,youraccesstoandenjoymentofpublicspaces(eg parks,pools,theatres,shoppingcentres,publictransportetc) oryourownprivatespace(eg.yourhome).Making environmentsyouusemoreaccessibleandappropriate(eg playgroups,kindergartens,library,etc). (Wilson, E.; Hagiliassis, N; NicolaRichmond, K. & Mackay, A. (2007). Measuring the outcomes of inclusivecommunities.42ndASSIDConference,Perth.;Wilson,E.;NicolaRichmond,K.;Hagiliassis,N; Campain, R.& Mackay, A., (2008). Defining and measuring the outcomes of inclusive communities. WANationalDisabilityServices‘LivingintheWest’Conference,Perth;Wilson,E.;NicolaRichmond,K.; Hagiliassis, N; Campain, R.; McGrellis, W. & Mackay, A. (2009) Are we making a difference? New ways to measure outcomes for people with a disability and the communities with whom they DeakinUniversityAProfErinWilson Page19of43 engage.InternationalCerebralPalsyConferenceSydney,February2009;Wilson,E.&Hagiliassis,N. (2012). Measuring outcomes of self directed services and supports. National Disability Services, 'Preparingforthenewworld'Conference,Adelaide,May2012.) Arangeofoutcomemeasurementdatacollectiontoolshavebeendevelopedandtrialedincluding: x OutcomesandImpactsTool(Wilson&Hagiliassis)aonepageclientratingoftheimpactofa serviceorsupportoneachlifeoutcomesarearangingfromverynegativeimpacttoverypositive impact.Thistoolhasbeenusedtoevaluateavarietyoffundedservicesandsupports. x MOSS(MeasurementofServicesandSupports)(Wilson,Hagiliassis,NicolaRichmond,Mackay) ashortclientreporteddatacollectiontooltoevaluateoutcomesofagoaldirectedserviceor support.ThetoolissupportedbyseveralpublicationsincludingaTechnicalManual,an explanatoryLiteratureReview,aToolShortForm,andrangeofresearchreportsinwhichthe toolhasbeenusedtoevaluateoutcomesofservices. x TheFamilyCopingandCapacityScale(Hagiliassis,Wilson,andMcGrellis)ashortclient reportedscaletoassesstheimpactofaserviceorsupportonthecopingandcapacityelements ofafamily,specificallydesignedforuseinearlychildhoodinterventionsettings. x IndividualisedPlanning/ReviewTool(Wilson&Campain)atoolbasedonpersoncentred planningapproachtocaptureevaluationdatainrelationtoanindividual'splan.Publicationin press(Wilson,E.&Campain,R.(submitted)Reflectionsonmeasuringoutcomesofindividualised plansforpeoplewithdisability). Layton,N;Colgan,S;Wilson,E;Moodie,M&Carter,R.(2010).TheEquippingInclusionStudies: AssistiveTechnologyUseandOutcomesinVictoria.Burwood:SchoolofHealthandSocial DevelopmentandDeakinHealthEconomics,DeakinUniversity. Excerpts: EvaluativecommentsontheVAEPandothergovernmentATfundingprograms: WhatworkswellcurrentlyintheVAEP(VictorianAidsandEquipmentProgram) Fortyonepercent(41%)ofsurveyrespondentsidentifiedtheVAEPastheirmainsourceoffundingto purchase AT (Assistive Technology). Respondents reportedthat their AT (provided bothby VAEP and other sources) enabled them to achieve results in thirteen of the sixteen ‘life areas’ identified in the Victorian Department of Human Services Quality Framework (the accountability framework for government investment in disability services). This suggests that the VAEP is an important source of supportforpeoplewithadisabilityandcontributestotheirlifeoutcomes. ProblemareaswiththeVAEP Ofthe100surveyrespondents,91%aretheoreticallyeligiblefortheVAEPprogram,yet30%selffunded theirAT.Further,73%oftheitemsidentifiedasrequired,(butremainingunprovided),byparticipants DeakinUniversityAProfErinWilson Page20of43 areeligibleforVAEPfunding,ie.theitemsareontheVAEPAidsandEquipmentList.Thissuggeststhat people with disabilities are not using the VAEP to the full extent of their eligibility. Qualitative data providesarangeofreasonsforthis.SomeparticipantsdescribedoptingoutoftheVAEPsystemonthe groundsthatproceduralhurdles,waitingtimesanduncertainoutcomesrenderitanineffectiveoption, despitethenexperiencingsubstantialhardshipandcompromisedparticipation. Compared to current market costs, VAEP subsidy rates on average cover 66% or less of AT purchase costs.VAEPsubsidygapsincludeshortfallsof27%forwalkingframes;42%formanualwheelchairs;31% forbeds,35%forportableramps;17%formobilehoists;49%forpressurecareequipment;andupto 78%forhomemodifications.Respondentsreportsignificantfinancialstressresultingfromthislevelof cocontribution(ieselffundingthe‘gap’),giventheirlowincomestatus. Respondentsidentifiedthattheyusedandrequiredawiderangeofequipment,aroundathirdofwhich isnotcurrentlyeligibleforVAEPfunding.Overall,respondentsreportedcurrentlyusing386devicesthat arenoteligibleforVAEPsubsidies,32%beingcommunicationaidsand9%beingmobilityitems. In terms of the VAEP, respondents reported high levels of copayment and financial stress, long wait times for equipment, lack of maintenance and repair of funded AT, and funding guidelines that prohibitedupdatingATrequirementsbasedonchangingneeds. ThelackofprovisionofATresultedinrespondentsreporting114incidentsoffailuretoachieveresultsin thesixteen‘lifeareas’oftheQualityFramework(DepartmentofHumanServices2007).Ofthese,most were related to the area of ‘moving around’, followed by ‘having fun’, ‘paying for things’, ‘exercising rightsandresponsibilities’and‘expressingculture’.ThissuggeststhatthelackofprovisionofAT(related toinadequatefunding)resultsinfailuretoattainlifeoutcomesmatchedtotheVictorianGovernment policygoals. OtherfundingsupportforAT TheVictorianAidsandEquipmentProgramistheprimaryfocusofthisreport.However,evidencefrom The Equipment Study shows that it is used repeatedly in combination with other sources of funding support, both within the Victorian State Government (and the Department of Human Services, responsible for managing the VAEP), and other jurisdictions (Commonwealth, local government, non governmentandother).Theneedtonavigatethesemultiplesourcesinordertogainsufficientfunding topurchaseneededATcausesbothsignificantstressforrespondents,aswellasresultinginthefailure of equipment provision where the process is too burdensome or other factors produce this failure. Thereisaneedtocoordinateorstreamlinethesemultiplefundingprogramsandtoensureindividuals aresupportedtoaccesstheirfullentitlements. The Equipment Study found substantial limitations in AT provision, which act as a barrier to the achievementofparticipationasdetailedininternational,nationalandstatedisabilitypolicies.Some138 instancesoffailuretoachieverightsasexplicatedinthearticlesofUNCRPDwereidentified.Similarly, 114 incidents were classified as policy failures in relation to the Victorian State Disability Plan and its QualityFramework. DeakinUniversityAProfErinWilson Page21of43 Inshort,governmentshaveobligationstoovercomebarrierstotheequalcitizenshipofpeoplewitha disability. The inadequate provision of AT results in failure to attain equal citizenship, reduced achievement of State Government policy goals, and potential breaches of the UN Convention on the RightsofPersonswithDisabilities. IstheATfundingsystemeffective? Combining the evidence from The Equipping Inclusion Studies suggests that the effectiveness of the currentsystemofATfundingprovisionisburdenedwiththefollowingissues: 1. TheVAEP, andmostothersourcesofATfunding acrossjurisdictions, is a subsidy program. Subsidy programs require a level of copayment from recipients. Compared to current market costs, subsidy ratesonaveragecoverlessthan66%ofdevicecosts.Inmostsubsidyprograms,thelevelofsubsidyis setrelativetotheaffordabilityandfeasibilityofthelevelofcopaymentinrelationtothecharacteristics oftherecipientgroup(levelofneed,abilitytopayetc).Inmanyinstances,subsidyprogramsincludea ‘safety net’ provision for those who cannot meet the level of copayment, or for whom frequency of needanduseoftheprogrammakesthecumulativecopaymentleveltooonerousorunreachable. Inthisinstance,thepopulationrequiringATprovisionisthepopulationofpeoplewithadisability.The Equipping Inclusion Studies specifically focus on adults with a disability in Victoria requiring AT. This population is disadvantaged on several indices: most depend on government income support as their main source of income; most have low annual incomes; many are unemployed; there is a high proportionofparticipationpovertyamongstthisgroup.Thecapacityofthisgrouptomakecopayments for AT is severely limited. Their need for AT is substantial, with most requiring up to 13 devices and othermodificationsaspartoftheirATsolution.Thissuggestscopaymentswouldberepeated.Thusthe VAEP,andotherprograms,areoperatinginawayincompatiblewiththeirtargetrecipientgrouptothe extentthatthegroupcannotaffordtoparticipateintheprogram. 2.TheVAEPoperateswithinstricteligibilitycriteriainrelationtotheitemsofATdeemedtobeeligible (iealistofapproveditemsalongwithpolicyexcluding,orseverelyrestricting,repeatprovisionevenif needschange).TheEquippingInclusionStudiesfoundthatrespondentseachutiliseda‘suite’ofATthat wasinterrelatedandcodependentintermsofeffectiveness.Thatis,itemsfunctionedasapackageand were required to be used together. The elements of an AT solution comprised equipment devices, environmentalmodificationsandpersonalcare.CompoundingthisissueisthefocusoftheVAEP,and other programs, upon the device or piece of equipment, with limited attention to environmental modificationsorpersonalcare.ThereiscurrentlynofocusontheoverallcontextofATintheperson’s lifeacrossthesethreedimensionsofanATsolution.TheeffectivenessofATisdependentonthesuiteof ATbeingprovidedtogetherthoughnoattentionispaidtothis. Further,therewasahighdemandforATthatwasnotcurrentlyeligibleforVAEPfunding.Thisincluded ‘generic’itemssuchasmobilephonesandcomputerapplications.Inallinstances,thegenericitemwas anessentialpartofahighlycustomisedATsolutionthatproduceddesiredlifeoutcomes.Currentlyonly those items deemed eligible are subsidised. This problem is underlined by the narrow scope of AT DeakinUniversityAProfErinWilson Page22of43 includedintheVAEP.The2010AidsandEquipmentListofVAEPwasfoundtoholdeligibleonly13%of the AT device types listed in ISO 9999 (2007), an internationally accepted classification system for assistive products for persons with disability. This narrow eligibility appears to exclude, ad hoc, many devicetypesthatsupportmobility,communication,andothercategorieswithintheVAEPfundingscope, as well as other needed items. This program response is unlikely to achieve effective outcomes from suchadhocandpiecemealinvestment. 3. Limited or partial eligibility for funding schemes and the high burden of copayment propels applicantsintoasearchfor‘fit’intomultipleotherfundingprograms.Inthisenvironment,theonusison disadvantagedindividuals(casebycase)toseekoutotherfundingsourcesforAT(includingthosealso managedbytheDepartmentinchargeoftheVAEP).Therearesignificantnegativeimpactsofthisboth fortheindividualandfortheservicesystem.Asaresultofthiscomplexsystem,paiddisability,welfare and medical staff are spending significant time away from other core service delivery to seek out fundingsourcesforclients(Pate&Horn2006).RespondentsinStudy1alsoreportsignificantdifficulty andtimespentundertakingthissearchforalternatesources.Timedelaysresultingfromthesearchfor ‘gap’fundsmeansthattherearelengthydelaysofATbeingapproved,ordered,deliveredandinstalled orused.ThesedelaysaffecttheappropriatenessofATactuallydelivered,astheinterveningtimeperiod (insomecasesmorethanayear:Wilson,Wong,Goodridge2006),hasledtochangesinindividualneed, aswellasincreasedsocialandhealthdeterioration(andtheflowoneffectsandcostsofthese).Further, therequirementtomeetmultiple(andsometimesconflicting)requirementsofvariousfundingsources fromdifferentjurisdictions,canplaceunnecessarylimitsonthealloweduseofATacrosslifedomains (eg.fundingguidelinesprohibituseofATindifferentvenuesorfordifferentactivities).Finally,multiple sourcesoffundingresultinalackofclearresponsibilityforrepairsandmaintenancewiththeindividual often left with this burden. Respondents in Study 1 report that repairs and maintenance are unaffordable to them; are not carried out by funding bodies; and that AT becomes dysfunctional or unsafe. Wilson, E. & Campain, R. (unpublished). Above and beyond: Exploring outcomes and practices of Scope Southern Region Early Childhood Intervention Service for children with disability. Box Hill: Scope. Excerpts: This research project is an exploration of the early childhood intervention service (ECIS) provided by Scope Southern Region. The research seeks to examine the benefits and outcomes for families and children. In doing so, the project’s emphasis is on key practices such as family centred practice and transdisciplinary practice, while examining the enablers and barriers to providing positive benefits to familiesandchildren.Thecentralquestioniswhethertheinterventionsareofassistancetofamiliesand children. Put simply – are early childhood interventions leading to positive outcomes for families and children? DeakinUniversityAProfErinWilson Page23of43 Thespecificresearchquestions,alongwithasetofsubquestionsortopicareasare: 1. 2. What are the outcomes experienced by children and families resulting from ECI services in the SouthernRegionofScope? Theresearchsoughttoidentifyandanalyse: x thesortsofoutcomesaspiredtobyfamilies, x thelevelofachievementandtypesofoutcomesachievedforfamiliesandchildren, x theextenttowhichserviceprovidersandfamiliesfeelthatneedshavebeenmet, x thelevelofsatisfactionparentshavewithservicesreceived,and x theenablersandbarrierstooutcomes. WhatistheextentoffamilycentredpracticeinusewithinECIservicesprovidedbyScopeSouthern region? Theresearchsoughttoidentifyandanalyse: x howtherapistsunderstand‘familycentredpractice’, x x x 3. howparentsratetheextentoffamilycentredpractice, thelevelofparentinvolvementinFamilyServiceandSupportPlandevelopment, theextentoftherapists’familiaritywithFamilyServiceandSupportplans. Whataretheelementsandpracticesofsupportingtransdisciplinarypracticeintheregion? Theresearchsoughttoidentifyandanalyse: x x x thedegreeandtypeoftransdisciplinaryworkundertakenbythetherapist, theresourcingandsupportoftransdisciplinarywork, theconfidence,experiencesandpreferencesoftherapistsworkingintransdisciplinarypractice. These research questions broadly address some of the key concerns of the Victorian Government. Overall, key Victorian Government policy statements emphasise child outcomes and the fostering of relationshipsbetweenchildren,familiesandcommunity.Generalthemesemphasizetheimportanceof governments and services in working in partnership with families while supporting them in achieving positive health and developmental outcomes for their children. Social inclusion for children and their families, and the right for all to participate fully in the community, are key goals of the Government basedontherecognitionofhumanrights. Researchers collected data on a range of key domains at a number of time intervals commencing in November2006throughtoDecember2009.Overall,eightmainmethodsofdatacollectionwereused including; x x ayearlyparentsurvey(with68parentrespondentsbetween2006and2008), analysisofFamilyServiceandSupportPlans(FSSPs)(26plansintotal), DeakinUniversityAProfErinWilson Page24of43 x x x x x anOutcomeandProcessdocumentattachedtotheFamilyServiceandSupportPlan(3intotal), ayearlytherapistsurvey(with24therapistresponsesbetween2006and2008intotal), arecordofmanualusage(26responsesin2007and2008intotal), individualtherapistinterviews(6)andfocusgroups(3)in2007and2008,and parentinterviews(7participantsintotalbetween2007and2008). Keyfindings:Outcomes For the purpose of the study, outcomes were assessed according to outcomes for children and outcomes for families. The literature on outcomes examined for this study articulates the inter relatednessofchildandfamilyoutcomesinthatpositiveoutcomesforonewillhavepositiveoutcomes for the other. The literature also offers little consistency in terms of identifying outcome areas or methodsofmeasurement. Outcomesforchildrenwereassessedintermsofthetypeofgoalsidentified(oroutcomesaspiredto) withinFamilyServiceandSupportPlansandthelevelofachievementofthese.Outcomesorgoalswere classifiedinrelationtothecategoriesoffunction/activity,participationandenvironment(asdefinedby the International Classification of Functioning Classification and Health, WHO, 2001) as well as in relation to nine broad life areas (Wilson, 2006). This is broadly consistent with the ECIA (Victoria Chapter)OutcomeStatements(MooreandSargood,2005)thatproposeoutcomesofservicedeliveryfor children and families (as well as communities) in the areas of functioning (understood as both knowledgeandskills),andparticipation(whichincludesinvolvementwithothers,attitudes,supportand coping). Intermsoffindings,aclearmajorityofoutcomegoalsforchildren(anaverageof78%across2007and 2008) relatedtofunction/activity (e.g.‘tositindependentlyandsafely’).Theremainderofgoalswere focusedonachievementsrelatingtoparticipationandenvironment.Thisemphasisonfunctionwasalso reflectedintheanalysisusingrelatingtolifeareas(Wilson,2006),whichevidencedtheprevalenceof goalsrelatingtopersonallife(andaverageof72%).Thefocusonfunctionmaysuggesttheapplicationof amedicalmodelofinterventionratherthanasocialmodel.Thisisnotsurprisinggiventheageofthe children (04 years), as parents are likely to be concerned about maximising the motor and cognitive skillsoftheirchildintheearlystagesofhumandevelopment.Whilenotexplicit,arguably,thereisan implied element of participation in that the development of motor and cognitive skills may assist in greaterlifeparticipation. Intermoflevelsofachievementofoutcomesforchildren,across2007and2008justover50%ofgoals were judged by therapists and parents as either ‘achieved’ or ‘ongoing progressing well’. Approximatelyathirdwere‘ongoingcontinuing’.However,thelevelofsuccessinachievinggoalsisnot easilyinterpretedfromthisdata.Thisquantitativeanalysisofachievementwouldsuggestamixtureof significant success and an uncertain level of achievement given the ongoing need to work at certain goals.Givenmostofthegoalswererelatedtocognitiveormotordevelopment,thissuggestsmanyof thesegoalswillrequirealongtermfocusandcontinuousinterventionasprogressismade.Bycontrast, somegoalsareframedasshorttermandthereforearemorelikelytobeachieved.Also,noinformation DeakinUniversityAProfErinWilson Page25of43 isavailablewithregardtothedegreeofdisabilityandtheanticipatedtimeframeforsuccess.Suchissues suggestthatcautionmustbeexercisedindeterminingthesuccessornotofaservicebasedonstatistical criteria.Theuseofinterviewdataevidencestheoverwhelminglypositiveviewofparentsandtherapists inregardtooutcomesachievementforchildren. Outcomes for families were assessed in terms of the impact of service on parenting capacity and the impact on nine broad life areas. In addition, parents also provided ratings of satisfaction with the service,willingnesstorecommendtheservicetoothers,andanassessmentoftheextenttowhichtheir needsweremetbytheservice.Aswiththeresultsforchildren,outcomesforfamilieswerepositivein relationtothemeasuringofninelifedomainsandthetwelveitemsrelatingtoparentingcapacity.On average across 2007 and2008, approximately twothirds of parents reported very positive to positive impacts across life areas particularly in the areas of personal and family wellbeing, social life, educational life, and recreational and leisure life. Approximately one third also rated that the service had no impact on life areas, possibly because goals on FSSPs largely focused on function and parents may not have considered service impact beyond functional intervention. With regard to parenting capacity, only 13% in 2007 and 9% in 2008 saw the service as having no impact in this area with an overwhelmingmajorityregardingtheserviceashavingaverypositiveorpositiveimpactonparenting capacity. Similarly,anaverageof82%ofparentsin2007and2008ratedtheserviceasmeetingmostoralltheir needs,andanaverageof96%ofparentsinbothyearswere‘mostly’or‘very’satisfiedwiththeservice. Consistentwiththis,anaverage89%ofparentswould‘definitely’or‘probably’recommendtheservice toothers.Despitethesepositiveresults,thestudyreportsconcernsintheliteratureinregardtotheuse ofsatisfactionmeasuresasproxyindicatorsforoutcomesachievement. Itcan thereforebeconcluded that,generally, theservicehasprovidedpositive outcomes forchildren and families. Despite this, parents also identified areas for improvement in service delivery by identifyingbothenablersandbarrierstopositiveoutcomes. In interviews, parent surveys and in reviews of Family Service and Support Plans in 2007 and 2008, therapistsandparentswereaskedtoidentifytheenablersandbarrierstooutcomes.Theenablersand barriers to positive outcomes identified by families are broadly consistent with those identified by therapists. Themajor enablertoachievingpositiveoutcomes appearsto beadequate resourcesthis includestheprovisionofcompetentandcommittedtherapiststoworkempatheticallywithchildrenand familieswithongoing,regulartherapeuticinterventionandfamilysupport.Familiesalsohighlightedthe need for access to equipment to support the child, and the provision of guidance, instruction and associatedactivities.Allofthisrequirestime,whichfamiliesrecognisedasabarriertooutcomes,asthey attemptedtojugglethevariousdemandsintheirlives,whiletherapistswerealsorestrictedbytimedue to the various demands of their work loads. As a result, other barriers identified were insufficient therapyprovisionandlackofmoneyandresources. Itshouldbeemphasisedthatoverwhelminglyfamiliespraisedtheskill,empathyanddedicationofthe therapists.Manyofthemexpressedthewayinwhichtheyfelttherapistshadgoneoutoftheirwayto DeakinUniversityAProfErinWilson Page26of43 supportfamiliesandhaddemonstratedtheircommitmenttoworkingandcollaboratingalongsidefamily members. Where families had concerns, they felt that service budgetary limitations hampered the extentoftheworkthatcouldbedoneandthatthiswasnotafaultoftheserviceorindividualtherapists butwassystematicthroughoutthepublicsector.Fundingissuesimpactalloftheenablersandbarriers mentionedabove.Moreadequatefundingtargetingthesekeyareascouldworktowardsmoreenabling practicesandbetteroutcomes. Wilson,E.&Campain,R.(submittedunderreview)Reflectionsonmeasuringoutcomesof individualisedplansforpeoplewithdisability. Excerpts: This paper offers a discussion of a project to measure the outcomes of individualised planning for a smallgroupofadultswithintellectualdisabilitiesinVictoria.Thepaperprovidesreflectivecommentary onanoutcomemeasurementprocessthatinvolvedtheuseofindividualplansandthedevelopmentof anIndividualisedPlanning/Reviewtooltoassessgoalsandoutcomes.Analysisisprovidedfortherange ofgoalsandoutcomesaspiredto,thelevelsofrepeatedorongoinggoals,andthemeasurementoftheir achievement. Exploratory insights are offered in regard to outcome measurement and the extent to which individual plans can be an effective and meaningful part of comprehensive evaluation of the effectivenessofsupportsprovided. ResultsandDiscussion i) Levelofgoalachievement Overall,resultsinallsectionsofindividuals’planswerepositive,withahighdegreeofachievement(an average of 70.7% of items of importance achieved within each plan), and adequacy of frequency (an average65.1%ratedasadequatewithineachplan).ThisissimilartothefindingsofWighametal(2008), whofoundahighdegreeofgoalsmet,including80%ofleisurerelatedgoalsmet,66%ofsocialnetwork goalsmet,and73%ofindependenceandskillsgoalsmet. Analysisofthenegativeresponses(i.e.‘no’inregardtodoesithappenoradequatefrequency)identifies that,inthemain,negativeresponseswererelatedtoelementsthatrepresentedcomplexchange actions(43%ofnegativeresponses)involvinglongtermchange(e.g.findingownplacetolive),lifestyle change(e.g.changingeatingandexercisehabits),orinvolvingactivityacrossmultipleservicesand supports(e.g.organisingandfundinghealthprofessionals). ii) Breadthofgoals/outcomesaspiredto Aswellastheextentofgoalattainment,wewereinterestedtoexplorequestionsaboutthebreadthof theplancoverage.Wereserviceslimitingthegoalsincludedinplans,orweretheyreflectingthe‘whole oflife’interests,needsandaspirationsoftheindividual?Tothisend,wedecidedtoanalysethe elementsoftheplandeductively,usingtwolifedomainandoutcomeframeworks,anticipatingthata personcentredplanwouldlikelyreflectelementsacrossawiderangeoflifeareas.TheDHSQuality DeakinUniversityAProfErinWilson Page27of43 Framework(DepartmentofHumanServices,2007)andtheOutcomesFramework(Wilson,2006)were selectedforthisproject.TheOutcomesFrameworkdevelopedbyWilson(2006;Wilson&Campain, 2011)attemptstocapturelifeexperienceandaspirationbyidentifyingnineareasoflife:personal, social,political,economic,educational,recreationandleisure,cultural,spiritual,andenvironmental. Analysisagainstthefirstoutcomesframework(Wilson,2006;Wilson&Campain,2011),showsa breadthofoutcomefocuswithinplansacrossthefouryearsofdatacollection(table4).However, elementswerestronglyclusteredintothreemainareas:personalwellbeing(averageof28.6%of elementsclusteredhere);sociallife(21.8%);recreationalandleisurelife(21.8%).Asthemostcommonly referencedarea,personalwellbeingwasfurtheranalysedtoidentifythemainthemeswithinit.The majorthemeinthisareawasthatofhealthandfitness(26.5%ofelements),followedbythe developmentoflifeskillssuchascooking,usingmoney,literacy,andphoneskills(18.1%).Otherthemes includedsupportwithtransport,acquiringaccommodation,learningtodrive,developingpsychosocial skills(assertiveness,angermanagement),mentalandemotionalhealth,andexercisingindependence andchoice.Asmallerproportionofgoalswereclusteredintheareasofeducationallife(10.9%)and economiclife(9.4%).Thelifedomainsrelatingtopoliticallifeandspirituallifereceivedlittleattentionin anyofthefouryearsofplansavailableforthenineparticipants A similar clustering was evident usingthe DHS Quality Framework life areas (table 5). Life areas most frequently mentioned in plans were those of: ‘Having fun’ (an average of 18% of elements clustered here);‘Buildingrelationships’(16.5%);‘Lookingafterself’(11.1%);‘Beingpartofcommunity’(9.7%);and ‘Always learning’ (9.6%). Again, a wide spread of actions and elements was apparent. However, few elementswereclusteredintheareasof‘Exercisingrights/responsibilities’and‘Choosingsupports’. Thisanalysisofferssomeguidancearoundtheareasoflifewhichservicesmustprovidesupportswithin, whichspeakstotherangeofprofessionalskillsandknowledgerequiredofstaffworkinginthisservice context. Though there is a need to be cautious in our conclusions given that this research focused specificallyonacommunitygroupofyoungadultswithintellectualdisability,thedataabovesuggests that servicesand their staff can anticipate a substantial focus in the areas of supporting relationships andsocialactivities,aswellaspersonallifeneedssuchasthoserelatingtosupportinghealthandfitness goals,thefurtherdevelopmentofawiderangeoflifeskills(cooking,banking,independenttravel),and developingpsychosocialskillssuchascopingwithanger,beingassertiveetc. i) Levelsofrepeatedorongoinggoals Six(6)participantsprovidedplansandor reviewdocumentsinmorethana singleyear,thusallowing comparison of goals listed from year to year. A high proportion of goals/actions listed in plans were repetitiveofpreviouslyidentifiedgoals/actions.Anaverageof81%ofsubsequentyeargoals,acrossthe six participants, were repetitions of goals from the previous or earlier years (within a five year time frame). It should be noted that in many cases, such goals were larger in scale and therefore more difficulttoachievewithalongertimeframerequired(e.g.‘findsuitablehousing’or‘holidaytoQLD’).In other cases, goal framing had ongoing relevance in a person’s life (e.g. ‘continued involvement with DeakinUniversityAProfErinWilson Page28of43 hockeyclub’or‘healthyfood/cooking’).Inasmallernumberofinstances,goalswererepeatedeven thoughtheyappearedpractical,shorttermandmoreeasilycompleted(e.g.‘learnselfdefense’). Thisanalysisleadstoacriticalengagementwithnotionsof‘achievement’and‘completion’.Itsuggests that evaluating outcomes based on goal completion has its limitations in relation to individual plans. Plans arelikelytocontinuetoidentifyand reaffirm themes ofimportance inpeople’slivesthathave longtermstability.Thiswouldseemappropriateunlesswearetoshiftthefocusofattainmenttothe leveloftasks(e.g.purchasenewhockeyuniform)relatedtogoals,whichfocusesattentiononservice outputsnotoutcomesofthese,thoughtheseareeasiertoapplycompletionmeasuresto. d)identifyexamplesofgoodpracticeoninclusionandparticipationdrivenbylocalgovernmentandthe communitysector. Relatedpoints: 6.3Arethereexamplesofgoodpracticeinadvancingsocialinclusionandparticipationdrivenbylocal governmentandthecommunitysector? Jenkin,E.&Wilson,E.(2009).Inclusion:makingithappen.Keyelementsfordisabilityorganisations tofacilitateinclusion.Melbourne:Scope(Vic). Summary: Thirteen (13) case studies of successful inclusion practice are presented from interview data. Case studiesareorganisedaccordingtotheOrientationstoinclusionworkdiscussedaboveinrelationtoTOR a). The majority of interviewees provided case studies relating to Orientation One (Individual person centredworkleadstoinclusion:Inclusionworkandcommunitybuildinghappenindirectresponsetothe expressed interests,needs, andaspirationsofspecific people withadisability).There isasignificantly lesser emphasis on supporting the community with social change and inclusive practice (Orientations twoandthree).Thisisapointforfurtherreflectionanddiscussion. DeakinUniversityAProfErinWilson Page29of43 e)assesshowtheDisabilityAct2006hasimpactedonthesocialinclusionofpeoplewithadisabilitywith respecttoVictoriangovernmentservices. Relatedpoints: 5.1TowhatextenthavetheinclusionandparticipationofVictorianswithadisabilitybeenadvanced followingtheintroductionoftheDisabilityAct2006(Vic)? 5.2WhatimpacthastheDisabilityAct2006(Vic)hadonthesocialinclusionofpeoplewithadisability withrespecttoVictoriangovernmentservices? Phillips,L.,Wilson,L.&Wilson,E.(2010).Assessingbehavioursupportplansforpeoplewith intellectualdisabilitybeforeandaftertheVictorianDisabilityAct2006,JournalofIntellectualand DevelopmentalDisability,35(1),15. Excerpts: In Australia, the Victorian State Government proclaimed the Disability Act 2006, (the Act) which legislates that disability services must engage behaviour support plans for people with intellectual disabilityandchallengingbehaviourwhenrestrictiveinterventionsarewarranted.Thisstudysoughtto elucidate the extent to which behaviour support plans are inclusive of best practice criteria, with a comparisonmadepriortoandfollowingproclamationoftheAct. Thisstudyfoundthatforsomebestpracticecriteria,therewasasignificantincreaseintheirinclusionin behaviour support plans following proclamation of the Act. In contrast, other criteria contained ambiguousorpartialdescriptionsonly,andtheyremainedinadequatelyincluded.Thefindingssuggest variabilityinthedegreetowhichspecificbestpracticecriteriabeforeandaftertheAct’sproclamation arecontainedwithinbehavioursupportplans.Onaverage,postActplanscontainedonly52percentof bestpracticecriteria. Despite the increased level of inclusion of best practice criteria in post Act behaviour support plans, significant deficits still remain. Staff in Disability Services in Victoria require a comprehensive skills traininginitiativefocusedonbehavioursupportandintervention.Theresultsofthisstudyindicatethat disability support staff are ill equipped to undertake the complex assessments, planning and implementationassociatedwithbehavioursupportstrategies,despitethelegislativeframeworkwhich guidesanddirectsthisintervention. f)recommendwaystoincreasesocialinclusionincludingtherolesofandcollaborationbetweenlocal, stateandfederalgovernments,thecommunitysector,individualswithadisabilityandtheircarers? Relatedpoints: 3.1Whatneedstohappentoensurethatpeople'sindividualdisabilityandexperienceareaccountedfor ineffortstoincreasetheirsocialinclusion? DeakinUniversityAProfErinWilson Page30of43 4.3WhatdoyouseeastheemergingissuesforVictorianswithadisabilityoverthenext20yearsand howmighttheseinfluencetheirsocialinclusion? 8.1WhatneedstohappentoimprovethesocialinclusionofVictorianswithadisabilityintothefuture? Jenkin,E.&Wilson,E.(2009).Inclusion:makingithappen.Keyelementsfordisabilityorganisations tofacilitateinclusion.Melbourne:Scope(Vic). Excerpts: Findingsidentifiedtheenablersandbarrierstoinclusion,whichcanactasaguidetoincreaseinclusion. Allintervieweeswereaskedtoidentifythefactorsthataffectedtheoutcomesoftheirinclusionpractice exampleorinclusionworkgenerally.Ineachsection,factorsareidentifiedinrelationtotheindividual (i.e. the person with a disability); the staff and organisation; and the community. Finally, data is presentedthat reflects interviewees’ identificationof key factors to influence the success of inclusion work. Enablersforinclusionworkidentifiedatthelevelofeachstakeholdergroup Individualandfamily StaffandOrganisation Community x Trust x Flexibility x Expressedchoice, interest x Reconceptualisingorganisation’srole x Relationships x Determination& commitment x Organisationalsupport&skillsharing x Resources x x Role&relationship withfamily,agency &inclusionworker x Attitude, commitment personalities and x Disabilityspecific communities Peoplewithadisabilityincontrol x Flexibility x Staff x x Resources Legislationand publicawareness x Promotinggoodpractice x Partnership x Timeandpatience x Leadership x Jointfocus Challengesfororbarrierstoinclusionworkidentifiedatthelevelofeachstakeholdergroup Individualandfamily StaffandOrganisation x Fearandlackofconfidence x Staff x Communication x Resourcesandtime Community x Attitudeandlackof awareness DeakinUniversityAProfErinWilson Page31of43 x Age,health&disability x Informalandformalsupport x Accessandinfrastructure x Safety x Finances x Personality x Organisingthework x Systemand organisational issues x Resources Currentissueswithpractice x Inclusionascommunitytourism,withafocusonbeing'present'ratherthanparticipatingin community/lifeactivities; x Adevaluingofcommunitiesofpeerswithdisabilities; x Inclusionworkisadhocandnotsystematicallysupportedinorganisations; x Lackoffocusonresourcesandtargetedworktoovercomebarriers; x Thesiloeffectthatpreventscoordinatedworkacrossdifferentdisabilityservicesandsupports. Whatneedstochange–newunderstandingsandapproaches x Inclusionisbothpersonalandsocialchange; x Peoplearepartofmultiplecommunities–allareimportant; x Theworkisbothlargescaleandskilled; x Inclusionisallstaff’sresponsibilityandneedstobeorganisationallyembedded; x Inclusionworkrequiresflexibility; x Inclusionreliesoncollaboration,partnershipsandcoordination; x Strategicplanningisneededtomanagethebreadthofinclusionwork. Implications: Asystemic,consistentapproachtoinclusionworkisurgentlyrequired.Inclusionworkmustbeexplicitly planned,resourcedandstaffed. Forgovernmentdepartments DeakinUniversityAProfErinWilson Page32of43 x Identify the current resources, areas of practice, and gaps in both by mapping current investmentcommittedtoeachofthethreeOrientationsofinclusionwork; x Inclusionrequiresidentifiedinvestmentthatislongtermandbasedonidentifiedareasofneed; x Clarifythepracticeofinclusionwork; x Activelydevelopcrosssectorcollaborationininclusionwork. Fororganisations x Inclusion work is core business for disability agencies and must be explicitly present in organisationalmission,strategies,staffingandresourcing; x Resourceallstafftoundertakeinclusionwork; x Developorganisationalsystemsandprocessesthataredesignedtoberesponsivetoindividual contexts; x Explicitlyrequireandresourcetheconnectionofpersoncentredplanningandinclusionwork; x Identifyexplicitleadershipandcollaborativerolesforpeoplewithdisabilitiesandtheirfamilies. ForPractitioners x Reflectiononpracticeiscriticaltosuccessfulinclusionwork; x Be continually aware of power differences when working with people with a disability, their familiesandcommunities; x Identifyandaddressstructuralbarrierscollaboratively; x Allowsufficienttimetofacilitateinclusionwork; x Adjustyourstrategiesandapproachesbasedonchangingcontexts. Kleeman, J. & Wilson, E. (2007). Seeing is believing: changing attitudes to disability. A review of disability awareness programs in Victoria and ways to progress outcome measurement for attitude change.Melbourne:Scope(Vic). Excerpts: Inorderfordisabilityawarenessandattitudechangeprogramstorefineandimplementkeyelements identifiedinthisstudy,theywillrequiresufficientresourcingwhichisunlikelytobeimmediately availabletothem.Theelementsidentifiedaboverequirealevelofcustomisationofprogramstospecific audiencesandcontexts,aswellasextendeddelivery,andthehighlevelinvolvementofpeoplewitha DeakinUniversityAProfErinWilson Page33of43 disability.Suchingredientsrequiretheactivesupportofgovernmentandnongovernmentfunding programs. Theresearchsummarisedinthisreportalsosuggeststhatthereisaneedtoexpandbeyondthe traditionalfocusofdisabilityawarenessprograms.Attitudeandbehaviourchangeisinfluencedby aspectsofthecontextandofthebroaderattitudesendorsedwithinthiscontext.Thisrequirestargeted workwithinthespecificcontextsinwhichdisabilityawarenessprogramsaredelivered,ie.schools, universities,workplaces,localgovernmentandcommunitygroups.Thisworkwouldinvolve: x Worktodevelopthepolicyandregulatoryenvironmentofthesecontextstoensurethesesupport the desired attitudes focused on by awareness programs. Ensuring that policies and structural practices‘lineup’orareconsistentwithdesiredattitudesandbehavioursislikelytoincreasethese positivebehaviours; x Worktoaddressthebarrierstoactionwithinspecificcontexts,identifiedbyparticipants,toenable participants to enact behaviours (that is, have the skills, opportunities and resources) and be rewarded(ratherthandisadvantaged)withpositivebenefitswhentheydoactinthisway. Thiskindofworkisoftenundertakenbycommunitydevelopmentorinclusionworkers,thoughisnot wellidentifiedbyorganisationsasataskofattitudeandsocialchange.Thisworkneedstobe understoodascomplementaryevennecessarytothatofdisabilityawarenessprogramsandcouldbe undertakenasanexpansionoftheseprogramsorbyotherstaffororganisations,solongastheworkis linkedandcoordinated. Layton,N;Colgan,S;Wilson,E;Moodie,M&Carter,R.(2010).TheEquippingInclusionStudies: AssistiveTechnologyUseandOutcomesinVictoria.Burwood:SchoolofHealthandSocial DevelopmentandDeakinHealthEconomics,DeakinUniversity. Excerpts: IngredientsofaneffectiveATfundingsystem: AfocusonAssistiveTechnologysolutions The Equipping Inclusion Studies provide repeated and consistent evidence that individuals require multiple elements of an AT solution (ie multiple aids and equipment, multiple environmental modifications,andepisodesofcare),andthattheeffectivenessoftheseisachievedormaximisedwhen usedtogether.Inthiscontext, a piecebypieceapproachtotheassessmentandfunding of AT makes littlesense.GovernmentfundingofATwouldbemoreeffectiveifitmovedtoafocusontheprovision ofan‘ATsolution’as: ‘anindividuallytailoredcombinationofhard(actualdevices)andsoft(assessment,trial andotherhumanfactors)assistivetechnologies,environmentalinterventionsandpaid and/orunpaidcare’(AssistiveTechnologyCollaborationn.d). DeakinUniversityAProfErinWilson Page34of43 Such a focus allows solutions to be tailored to individual needs, aspirations and context, and the co dependencyofeachelementofATtobeplannedforandprovided. ‘Fitforpurpose’and‘fitfortime’ AnunderstandingofthedynamicandevolvingnatureofATsolutionsforthoselivingwithdisabilityis alsoessentialtoattainsolutionsthatareboth‘fitforpurpose’and‘fitfortime’.Substantialdatafrom thesestudiesspoketotheincrementalnatureofchangerelatedtoage,toadjustment,toimpairmentor diseaseprogression,lifestage,andchangingrolesandresponsibilitieswithinthefamilyandcommunity. Life changes require responsive AT funding which offers more than onceperlifetime home modifications,orsevenyearlyATreplacement. The‘bestfit’ormosteffectivesolutionisshowntoincludeadiverserangeofcustomisedandgeneric devicesusedinterdependently.TheVAEPfundsonlyaverysmallproportionofneededitemsbasedon anextremelynarrowlistingofeligibledevices.ThemixofmainstreamanddisabilityspecificATdevices inuse, andthe virtually complete lackoffunding formainstreamdevicesevenwhen'fitforpurpose', points to major potential costefficiencies as well as support for mass market industries to continue investmentininclusivedesignsolutionswithwideapplications. In order to achieve maximum effectiveness, eligibility of subsidised AT needs to: relate to individual needs; recognise the interdependency of suites of elements of AT; and enable wide selection of elements and devices from generic and customised options. This set of criteria are best met by mechanisms other than a ‘list’ of approved equipment, such as via funding guidelines based on the abovecriteria,and/orthroughannualindividualbudgetallocations(thatcanbeusedtopurchaseself prioritisedsuitesofitems). Efficientsystems ThegovernmentbudgetforATneedstobesufficienttoachievegovernmentpolicydirectedoutcomes. The means of improving the current system may include a high level of coordination within VAEP to gain funds from appropriate parts of the overall health, aged care and disability systems. Substantial elementsofATcosthavebeenshowntobecarriedbyfundersotherthantheVAEP,thereforeahealth sector perspective is required to realign funding across and beyond current funding silos, maximise efficientdeliveryofATsolutionsandminimisedownstreamcosts. Anefficientfundingprogramwouldensureacoordinatedandstreamlinedresponse,abletointegrate 'pieces'ofATsolutionsandtheirfunding.Thiskindofcoordinationrequiresasinglepointofentryto 'casecoordinators',whoareabletoaccesspocketsoffunds(forexampleworkbasedandeducation based AT funding, or funding via personal care packages), track outcomes to a range of funding schemes, and undertake ‘back of house’ transfer of funds between programs or to individuals. Additionally,thiskindofcoordinationrequiresleadershiptoworkwithdifferentjurisdictionstoachieve fundingcontributionstobemergedforthepurchaseofATsolutionsthatcanbeusedindifferentlife domains(relatedtodifferentjurisdictionalboundaries)forexampletheapproveduseofawheelchair forworkandhome. DeakinUniversityAProfErinWilson Page35of43 Affordability ATisthecornerstonetoefficientuseofgovernmentspendingondisability,andhasbeendemonstrated to underpin the achievement of life outcomes. The provision of AT is critical if government policy in regardtotheinclusionofpeoplewithadisabilityistobeachieved.TheVAEPisestablishedasasubsidy programtofacilitatethis. However, currently the VAEP is ineffective in this goal as a result of several critical misalignments of policy and need. As discussed above, the levels of subsidy set within the VAEP are significantly lower thantheactualcostoftheitemssubsidised.Thissignificant‘gap’istoogreatinmanycasestoenable therecipienttofindfundstopurchasetheitem.Inaddition,recipientsusuallyrequiremultipleitems andelementstoproduceaneffectivesolution.Thismultipliestheburdenofcosttoindividuals.Finally, the recipient cohort of the VAEP, in particular people with disabilities, experiences extreme financial disadvantageandisleastabletoaffordacopaymentcontributiontomeetthe‘gap’betweensubsidy andactualcostofitemortoselffundmultipleitems. As a result, the VAEP is currently not meeting the level of demand for AT from Victorians with a disability. Individuals remain without needed items and life outcomes are restricted or denied as a result.Inshort,demandexceedstheprogram’scapacity. Giventhelevelandnatureofmultipledisadvantageexperiencedbymanypeoplewithadisability,this populationcanbeconsideredaspecialneedsor‘equity’grouprequiringadditionalsupporttoequalise the life chances of this group in relation to other Australians. To achieve this, governments must increasetheirguaranteedshareinthecostofprovisionofATtothisdisadvantagedgroup.Thissuggests thatothermechanismsarerequiredtoachieveguaranteedfundingwhereeligibilityisestablished. Where an equity argument exists, there is a clear mandate for guaranteed government funding via mechanisms such as safety net provisions or tax deductibility. Based on equity criteria, a safety net system can effectively cap copayments for identified groups (eg by source of main income, level of annual income, or various equity characteristics including existing participation restrictions) or in identifiedsituations(egbytotalextentofcopaymentperannum). Overall,thereisastrongcaseforincreasingthebudgetforATsubsidyforpeoplewithadisability.An increaseinbudgetappearsnecessarytotheachievementofawiderangeofpolicygoalsforpeoplewith disabilities.Anincreasedbudgetrecognisesthenatureandextentofeconomicandsocialdisadvantage ofthisgroup.Expenditureisjustifiedinordertoreducetheequitygapacrossarangeofoutcomeareas. Conclusion TheEquippingInclusionStudiesshowthattheprovisionofassistivetechnologyresultsinawiderangeof impacts on people’s lives and enables them to participate in varied life areas. On the other hand, inadequate access to AT acts as a significant barrier to participation. Given people with disabilities experiencesignificantlevelsoffinancialandsocialdisadvantage,itfallstogovernmentstoadequately supportthemtoovercomebarrierstotheirfullparticipationinandcontributiontosociety.Thissupport includes the provision of AT solutions. The provision of AT solutions to people with disabilities is of DeakinUniversityAProfErinWilson Page36of43 critical importance in making a difference to the lives of individuals, as well as to the record of achievementofAustraliangovernmentsinupholdingtherightsofpersonswithdisabilities. Wilson,E.&Campain,R.(unpublished),AboveandBeyond:exploringoutcomesandpracticesof ScopeSouthernEarlyChildhoodInterventionServices20062009,Melbourne:Scope(Vic). Excerpts: Issuesaffectingoutcomesandinclusionthestorybehindtheresults The measurement of key aspects of the Scope Southern Early Childhood Service tells only part of the story. There is a bigger story to be told. This story is revealed in interviews with both families and therapistswhoidentifythecomplexityoftheircircumstances.Insomesituationsfamiliespresentwith complexproblemsintheirlivesincludinghousingandincomesupportneeds,physicalandmentalhealth problems, and parenting issues, among others, in addition to the complex needs related to raising a child with a disability. In some cases, families are experiencing extreme crisis, such as parents contemplatingsuicide.Inthiscontext,therapistsrequireawiderskillsetnotjustwithinthedisciplineof the ECI field but also related to counselling, social work and other fields, as well as substantial knowledgeofotherservicesandreferralnetworks. Against this is set the second major tension of service constraints related to funding limitations and policy and program parameters. These include high case loads of therapists, significant time spent in travelacrossalargeregion,andlimitedhoursperclient.Theworkloadmodelofeightypercentbillable hourshassignificantnegativeconsequencesincludingforcingtherapiststorestrictnecessaryelements of their interventions to clients, and to forfeit professional development and support time for themselves. Lastly, there is a range of ingredients necessary to the delivery of a quality ECI service. These include: service planning (involving a range of therapists and family members); sufficient time spent in face to face service delivery with the client; engagement in follow up activities and sourcing further information; liaison and capacity building with other agencies such as local governments, day careprovidersandearlychildhoodeducationservices;coordinationofalltheservicesdeliveredtothe family; involvement in professional development; and time spent in transdisciplinary practice related issues.Allthisisundertakenintheknowledgethatthereisanimmediatewindowoftimewherethe childrequiresintensivesupporttoachievemaximumdevelopmentalbenefit.Forfamiliesandtherapists, thereisoftenanexperienceofongoingstruggletostayafloatwithbothpartiesfeelingthatresources and supports are inadequate and barely enough to prevent people from drowning. As one therapist stated;‘Youalwaysfeellikeyou’retreadingwater’(Therapist07). Considerationsforservicedelivery 1. Meetingthecomplexneedsoffamilies: Thestudymakes clearthatthe needsof familiesare complexandfrequentlycrisisdriven,andthatearlychildhoodinterventionstaffneedsskillsand knowledge well beyond therapeutic disciplines to address these. To adequately meet these needs,servicesrequirespecificresourcestosupportearlychildhoodinterventionstaffsuchas DeakinUniversityAProfErinWilson Page37of43 identifiedsocialwork,counselling,and/orcommunityworkpersonnelwithexpertiseinthearea ofworkingwith‘atrisk’families.Whileitcouldbearguedthatsuchresourcesareorshouldbe locatedelsewhereinthebroaderservicesystem,thisstudyshowstherapistsunabletoaccess these resources sufficiently, and the barriers of time and knowledge that function to hamper thisaccess.ColocationofsuchresourceswithinECIserviceswouldovercomethesebarriers. 2. Transdisciplinarypractice:Whiletransdiscplinarypracticeisastatedelementofearlychildhood interventionendorsedbytheVictorianStateGovernment(EarlyYearsService,DHS,2005),this study has identified a range of difficulties with its implementation. As a result, services and government need to review the expectations around the implementation of transdisciplinary practice,identifyingwhatisrealisticandappropriate,giventheresourcesavailabletosupport its effective implementation. The study suggests multiple concerns with transdisciplinary practice, especially in the area of role release, and a clear preference of early childhood practitioners,inthisserviceatleast,forafocusoncollaborativepracticeandknowledgesharing ratherthanrolerelease. 3. Managingworkload,fundingandqualityservice:ThestaffingmodelusedintheSouthernECI Service requires staff to be ableto ‘bill’ eighty percent oftheir time as delivery of services to funded clients. This notion of ‘billable hours’ means that not only direct service delivery to clients is included, but all activity related to direct service such as travel time, time spent in developingresourcesorstrategies,timespentinupskilling,andinformationsearchesrelatedto theclient,isalso‘billed’againsttheclient’sfundedtotalhoursofservicedelivery.Respondents inthisstudyraisedmanyconcernswiththisapproach,notleasttheimpactonclientsandthe impactsontheoverallqualityofservice.Giventhattherapistsarerestrictedinhowmuchtime they can spend on any aspect of an intervention, they therefore have to ration their time, selecting some aspects of an intervention and sacrificing others (such as spending time developingacustomisedresource,orresearchingthelatestevidenceinrelationtoaproposed technique). Overall, this approach to the management of service delivery runs counter to achievingthebestqualityservicepossible,andresultsinarationedand‘pareddown’service. Similarly,thestructureof‘billablehours’withthetargetofeightypercentofastaffmember’s time billable to clients, also undermines interprofessional and collaborative work, as well as ongoingprofessionaldevelopment.Thisstudyrepeatedlyidentifiedexamplesoftheseactivities being restricted or denied due to the requirement to spend paid work hours in the delivery services,without adequateallocationoftimetotheprofessional needsof staffaspartofthis servicedeliveryrole. 4. Recognisingandaffirmingworktoachieveoutcomesforfamiliesandchildrenthatgobeyond ‘functioning’. WhilethisstudyfoundthatgoalsdocumentedaspartofFamilyServiceandSupportPlanswere predominantly focused on areas of ‘functioning’ of the child, therapists and families both frequently discussed the undocumented areas of work related to achieving outcomes in the DeakinUniversityAProfErinWilson Page38of43 areaoffamilylife,wellbeing,mentalhealth,finances,andsocialparticipation,amongothers.In many instances, these areas were considered to be of immediate importance and therefore took precedence over other stated goals. In most cases, these were not documented or evaluated though ECI staff spent much of their intervention time on these necessary tasks. Whilethereisanargumenttosuggestthatsuchprioritiesandgoalareasaretoopersonaland sensitive to be formally documented, and that to do so would breach trust and privacy of families,greatervaluingandrecognitionofthisworkisrequiredwithinservices. Conclusioncommentary Unfortunately there is not sufficient time to undertake a detailed synthesis or analysis of the data presentedabove.However,arangeofconcludingcommentscanbemadeinrelationtothelearnings fromthissuiteofwork: 1. Social inclusion is disputed notion however there is agreement between people with disability, the Convention on the Rights of Persons with Disabilities, and research literature to warrant a broad definitionofthisconcepttoincludewholeoflifeareasandrights.Thephrase'socialinclusion'isoftena catch phrase sometimes referring to the broad aspects of society and life within it, or to the more narrow concepts of social relationships and social life. It is the position of this submission, that the concept of social inclusion aligns with the Convention's discussion of 'full and effective participation' acrossalldomainsoflife.Thisisrarelytranslatedintoprogramandfundingpolicy,wherefrequentlythe understandingofwhatisallowabletofundinrelationtothisconcept,isextremelynarrow.Thisseverely limits the opportunities of people with disabilities to achieve social inclusion in its fullest and, some wouldargue,anyextent. 2.Theresearchaboveidentifiesmanyfacilitatorsofandbarrierstosocialinclusion.Whilesomebarriers (indeedasubstantialproportion)relatetoidentifiableresources,anothermajorchunkrelatetobroader social and structural change issues, including attitudes to disability. These structural issues, including levelofincome,arenotcurrentlywelladdressedinanyVictorianpolicyorwellfunded.Indeed,current programsthataddresssuchstructuralandcommunitydevelopmentactivities,areunderthreatwithina fundingandprogramregimethatfocusesonindividualisedfunding,totheexclusionoftheimportant work of connecting needs, developing responses to collective needs, changing social structures and facilities etc. As the disability sector grows to incorporate a greater range of private forprofit businesses,andaspeoplewithdisabilityseektoaccessgeneric(nondisability)servicesandfacilities(of public and private status), the requirement of these organisations and facilities to accommodate the diverse needs of people with disabilities is diluted as the argument of reasonable accommodation is pittedagainstargumentsofbusinessprofitability.Thisisamajorroadblockforinclusion,andmuchof the advances to date may stall at this point. Appropriate responses to this include legislative reform acrossarangeofareas(building,retail,healthservices,agedcareetc)aswellaswhathastraditionally beenfundedcommunitydevelopmentactivitythatcontributestopolicyandprogramdesignbasedon collectiveneeds. DeakinUniversityAProfErinWilson Page39of43 References Australian Bureau of Statistics. (2010) ‘4159.0 General Social Survey: Summary Results’, Commonwealth of Australia., http://www.abs.gov.au/ausstats/[email protected]/cat/4159.0 (viewed 3 April,2013). Australian Bureau of Statistics. (2011) ‘4439.0 Social Participation of People with a Disability’, Commonwealth of Australia, http://www.abs.gov.au/ausstats/[email protected]/mf/4439.0 (viewed 27 June2012). Davis,2005,'InvisibleDisability',Ethics,vol.116,no.1,pp.153213. 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Wilson,E.;Hagiliassis,N;NicolaRichmond,K.&Mackay,A.(2007).Measuringtheoutcomesofinclusive communities.42ndASSIDConference,Perth.; Wilson,E.;NicolaRichmond,K.;Hagiliassis,N;Campain,R.&Mackay,A.,(2008).Definingand measuringtheoutcomesofinclusivecommunities.WANationalDisabilityServices‘Livinginthe West’Conference,Perth; Wilson,E.;NicolaRichmond,K.;Hagiliassis,N;Campain,R.;McGrellis,W.&Mackay,A.(2009)Arewe makingadifference?Newwaystomeasureoutcomesforpeoplewithadisabilityandthe communitieswithwhomtheyengage.InternationalCerebralPalsyConferenceSydney,February 2009; Wilson,E.,Wong,J.,&Goodridge,J.(2006).Toolittletoolate:Waittimesandcostburdenforpeople withadisabilityinseekingequipmentfundinginVictoria.Melbourne:Scope(Vic). World Health Organization (WHO) (2001), International Classification of Functioning, Disability and Health(ICF),WorldHealthOrganisation,Geneva,Switzerland. DeakinUniversityAProfErinWilson Page42of43 DeakinUniversityAProfErinWilson Page43of43