Download Deakin University AProf Erin Wilson Page 1 of 43 Inquiry into Social

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
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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.
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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.
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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,
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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
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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
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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
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• 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:
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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
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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
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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
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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?
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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.
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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.
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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.
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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
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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);
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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:
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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
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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
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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.
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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
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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
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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
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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
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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
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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
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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
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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
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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?
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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
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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
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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
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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).
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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
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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
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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
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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
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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
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