inquiryintosocialinclusionforvictorianswithadisability … · 2014-09-15 ·...

43
DeakinUniversityAProfErinWilson Page1of43 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]

Upload: others

Post on 12-Aug-2020

1 views

Category:

Documents


0 download

TRANSCRIPT

Page 1: InquiryintoSocialInclusionforVictorianswithaDisability … · 2014-09-15 · DeakinUniversityAProfErinWilson Page1of43 InquiryintoSocialInclusionforVictorianswithaDisability Submittedby:

Deakin�University���AProf�Erin�Wilson� � Page�1�of�43�

Inquiry�into�Social�Inclusion�for�Victorians�with�a�Disability�

Submitted�by:�� Associate�Professor�Erin�Wilson,�School�of�Health�and�Social�Development,�Deakin�University.�

Contact:�� [email protected]�� Deakin�University,�221�Burwood�Hwy,�Burwood,�3125.�� 03�9244�6158�Date:� 28�February�2014�

Introduction�

This�submission�represents�the�views�of�Erin�Wilson,�Associate�Professor�in�Disability,�in�my�capacity�as�a�professional�educator�and�researcher�in�the�field�of�disability�and�inclusion.�It�has�not�had�the�opportunity�to�be�endorsed�by�the�University�proper,�or�by�other�organisations�and�individuals�have�collaborated�in�the�research�listed�below.�The�following�information�is�a�compilation�of�excerpts�from�existing�research�work,�conducted�by�myself�and�others.�This�work�has�frequently�been�collaboratively�undertaken�with�the�disability�service�provider,�Scope,�some�of�which�is�also�referenced�in�their�submission�to�the�Inquiry�and�a�copy�of�the�below�was�provided�to�Scope�to�be�used�in�their�submission�development.�The�work�represents�almost�a�decade�of�research�activity�in�relation�to�the�social�inclusion�of�people�with�a�disability�in�Victoria�(and�wider).���

The�submission�is�laid�out�in�relation�to�each�ToR.�It�provides�a�set�of�direct�text�excerpts,�usually�taken�from�publications�listed�below,�or�summaries�of�relevant�data.�In�many�instances,�a�single�publication�or�piece�of�research�provides�data�and�findings�relevant�to��multiple�ToRs.�In�these�instances,�the�reference�is�repeated�and�the�relevant�data�provided�in�relation�to�each�ToR.��

It�should�also�be�noted�that�Deakin�University�is�making�a�significant�contribution�to�the�skilling�of�professionals�in�the�area�of�disability�inclusion.�Though�this�a�feature�of�many�courses�and�programs,�it�is�a�particular�focus�of�the�Bachelor�of�Health�Sciences,�and�its�major�pathway�'People,�Society�and�Disability'.�This�major�pathway�comprises�six�under�graduate�units,�two�at�each�of�the�three�year�levels.�These�units�develop�skills�and�knowledge�in�relation�to�disability�and�practices�that�foster�inclusion.�In�the�past�several�years,�the�pathway�has�seen�a�significant�expansion�in�enrolments,�including�from�students�from�a�range�of�professional�areas�including�nursing,�psychology,�occupational�therapy,�education,�arts,�management,�social�work,�among�others.�This�is�a�positive�step�in�equipping�professionals�from�all�discipline�areas�to�have�the�skills�and�knowledge�to�include�people�with�disabilities�both�as�colleagues�(in�their�workplaces)�and�clients�(of�professional�services).�(For�further�information:�the�pathway�is�co�ordinated�by�Assoc�Professor�Erin�Wilson.)�

Further�information�can�be�obtained�from�AProf�Erin�Wilson�by�email:�[email protected]

� �

Page 2: InquiryintoSocialInclusionforVictorianswithaDisability … · 2014-09-15 · DeakinUniversityAProfErinWilson Page1of43 InquiryintoSocialInclusionforVictorianswithaDisability Submittedby:

Deakin�University���AProf�Erin�Wilson� � Page�2�of�43�

�a)�define�'social�inclusion'�for�Victorians�with�a�disability�

Related�points:��

3.2�How�should�'social�inclusion'�for�Victorians�with�a�disability�be�defined?�

3.3�What�is�the�difference�between�the�concepts�of�'social�inclusion'�and�'participation'�in�the�context�of�people�with�a�disability?�

3.4�What�does�social�inclusion�for�Victorians�with�a�disability�look�like�now?�

Jenkin,�E.�&�Wilson,�E.�(2009).�Inclusion:�making�it�happen.��Key�elements�for�disability�organisations�to�facilitate�inclusion.�Melbourne:�Scope�(Vic).�

Excerpts:�

This�research�project�looked�at�the�role�of�disability�organisations�in�working�together�with�people�with�a�disability,� families�and� communities� to� foster� inclusion�and� investigates�how�disability�organisations�can�enhance�their�function�in�facilitating�inclusion.���

Specifically,�the�project�aimed�to:�

1. Provide�clear�definitions�and�examples�of�what�is�meant�by�terms�associated�with�this�work�such�as�‘community’,�‘participation’,�and�‘inclusion’;�

2. Identify� the� key� factors,� enablers� and� barriers� (that� occurred� at� an� individual,� family,�community�and�organisational�level)�to�connecting�individualised�and�person�centred�work�with�inclusion;��

3. Identify� the� changes� or� outcomes� (that� occurred� at� an� individual,� family,� community� and�organisational�level)�as�a�result�of�a�selected�sample�of�this�work;�and�

4. Identify�the�key�organisational�tasks�or�ingredients�needed�to�enhance�this�work.�

The�research�involved�a�range�of�methods�including�reviewing�existing�literature�largely�from�the�fields�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�informants�currently�involved�in�inclusion�work�from�within�a�variety�of�service�types�(e.g.�day�services,�residential�services,�community�development�activity,�specialist�services�work).���

For�the�purposes�of�this�study,�inclusion�work�is�defined�in�the�following�way:�

Inclusion�work� involves�supporting�people�to�achieve,�do�and�be� in� life� in�the�ways�they�choose�and�identifying�and�removing�barriers�to�this�in�society,�services�and�individuals.�

This� research� proposes� three� Orientations� as� a� helpful� way� to� understand� the� ‘what’� of� inclusion�practice.��

Page 3: InquiryintoSocialInclusionforVictorianswithaDisability … · 2014-09-15 · DeakinUniversityAProfErinWilson Page1of43 InquiryintoSocialInclusionforVictorianswithaDisability Submittedby:

Deakin�University���AProf�Erin�Wilson� � Page�3�of�43�

Orientation�1:��Individual�person�centred�work�leads�to�inclusion.�

Inclusion�work�and�community�building�happen�in�direct�response�to�the�expressed�interests,�needs,�and�aspirations�of�specific�people�with�a�disability.�

Orientation�2:�Opportunities�are�created�in�community.�

Inclusion�work� and� community�building� require�workers� to�be�proactive� in� identifying,� creating� and�offering�opportunities�to�people�with�a�disability.�

Orientation�3:�Broad�level�community�change.�

Inclusion�and�community�building�focus�on�broader�structural�and�attitudinal�work.��

Inclusion�is�a�broad�scale�activity�that�requires�the�combined�focus�of�Orientations�1,�2�and�3�in�order�to�ensure�that�barriers�to�inclusion�are�removed�at�all�levels.�

The�study�presents�some�examples�of�how�different�agencies�have�structured�their�inclusion�work.�The�research�team�has�attempted�to�capture�commonalities�in�organisational�approach�and�have�identified�three�main�groupings:�

� Single�focus�work:�An�agency�organises�inclusion�work�around�individual�people�with�a�disability�and�their�families,�OR�around�a�single�field�of�activity�/�interest�(eg�recreation);�

� Broad� regional� work:� An� agency� organises� the� work� around� a� geographic� region,� or� a� set� of�broader�systemic�community�development�or�capacity�building�projects;�

� Service� redesign:� where� agencies� have� re�constructed� their� entire� organisation� in� order� to�provide�more�individualised�support�to�people�with�a�disability�or�focus�on�inclusion�in�different�ways.���

In�terms�of�personnel�requirements,�inclusion�work�involves�a�broad�range�of�job�roles�and�practitioners�need�to�be�generalists�across�these.��All�inclusion�work�is�underpinned�by�a�set�of�practice�principles�that�ensure�the�work�matches�its�purpose�and�is�ethical.��The�literature�of�community�development�is�helpful�in�delineating�the�skills�and�strategies�associated�with�inclusion�work.�

Draft�paper:��Wilson,�E.;�Campain,�R.;�Hagiliassis,�N.;�Caldwell,�M.;�McGillivrary,�J.;�Bink,�M.;�Graffam,�J.�(in�draft).�'The�1�in�4�project���measuring�social�exclusion.�An�outline�of�theory�and�method'�(Yet�to�be�submitted�for�publication)�

The�first�'1�in�4�Poll'�focused�on�social�inclusion.�To�this�end,�a�literature�review�was�conducted�to�investigate�the�concept�of�social�inclusion�and�how�to�operationalise�this�in�a�data�collection�method.�Researchers�are�currently�producing�several�publications�on�both�the�literature�review�and�development�of�method,�as�well�as�the�findings�in�relation�to�this�1�in�4�poll�on�social�inclusion.�A�short�explanation�(extract�from�draft�paper)�is�provided�below�to�discuss�the�concept�of�social�inclusion�as�it�was�adopted�for�the�1�in�4�poll.�

Page 4: InquiryintoSocialInclusionforVictorianswithaDisability … · 2014-09-15 · DeakinUniversityAProfErinWilson Page1of43 InquiryintoSocialInclusionforVictorianswithaDisability Submittedby:

Deakin�University���AProf�Erin�Wilson� � Page�4�of�43�

Excerpts:�

At�the�outset,��it�is�well�documented�that�there�is�little�agreement�about�the�definition�of�social�exclusion�(Hayes�et�al,�2008;�Saunders�et�al,�2007).�The�'working�definition'�proposed�by�Levitas�et�al�(2007:9),�and�highlighted�by�Australian�researchers�(Saunders�at�al�2007:12;�Hayes,�2008:5),�is�a�useful�starting�point:�

�'Social�exclusion�is�a�complex�and�multi�dimensional�process.�It�involves�the�lack�or�denial�of�resources,�rights,�goods�and�services,�and�the�inability�to�participate�in�the�normal�relationships�and�activities,�available�to�the�majority�of�people�in�society,�whether�in�economic,�social,�cultural�or�political�arenas.�It�affects�both�the�quality�of�life�if�individuals�and�the�equity�and�cohesion�of�society�as�a�whole�(Levitas�et�al.,�2007,�p.9�quoted�in�Saunders�et�al,�2007,�p.�12,�and�Hayes�et�al,�2008,�p.�5).�

In�a�similar�vein,�summarising�a�range�of�definitions�from�the�U.K.,�U.S.A.�and�Australia,�Hayes�states�that�key�characteristics�in�the�definitions�of�social�exclusion�‘involve�restriction�of�access�to�opportunities�and�limitations�of�the�capabilities�to�capitalize�on�these,�along�with�reference�to�the�social�and�economic�dimensions�of�exclusion’�(2008:�6).�This�set�of�ideas�is�again�repeated�by�Australian�researchers�Saunders�and�Wong�(2009)�who�argue�that�the�'social�exclusion�framework�shifts�the�focus�away�from�the�role�of�resource�constraints�(important�those�these�often�are)�onto�the�other�factors�that�can�prevent�people�from�participating�in�various�forms�of�social,�economic�and�political�activity’�(p.�11).�Saunders�and�colleagues�discuss�the�exploration�of�social�exclusion�as�identifying�the�'factors�that�restrict�people's�ability�to�acquire�the�items�and�participate�in�the�activities�that�are�widely�regarded�as�essential�for�full�membership�of�society'�(Saunders�et�al,�2007:2).�

This�definition�captures�three�elements�common�to�many�definitions:�

1. a�denial�of�a�set�of�resources�(goods,�services,�rights);��

2. a�lack�of�participation�in�a�range�of�norm�referenced�social,�economic�and�other�activities;�and�

3. the�notions�of�inter�connection�between�elements�of�social�exclusion,�and�the�implication�of�factors�that�prevent�social�inclusion.�

Each�of�these�elements�is�defined�variously�by�different�authors�and�researchers�in�different�countries�and�contexts.�

Denial�of�a�set�of�a�resources�

Various�definitions�of�social�exclusion�engage�with�concepts�of�poverty,�inadequate�income,�income�inequality,�impoverishment�(as�a�broader�notion),�consumption�and�deprivation.�Due�to�the�definitional�and�operational�issues�of�using�poverty�as�an�indicator�of�disadvantage,�the�related�notion�of�deprivation�has�been�utilised�in�this�arena�and�as�a�component�of�social�exclusion.�Deprivation�is�defined�as�‘an�enforced�lack�of�socially�perceived�necessities�(or�essentials)’�(Mack�and�Lansley,�1985:�35,�quoted�in�Saunders�et�al,�2007:�10),��and�is�linked�to�the�notion�of�'missing�out'�as�opposed�to�being��'left�out'�as�related�to�the�notion�of�social�exclusion�(Saunders�et�al,�2007,�vii).�The�first�step�in�defining�deprivation,�

Page 5: InquiryintoSocialInclusionforVictorianswithaDisability … · 2014-09-15 · DeakinUniversityAProfErinWilson Page1of43 InquiryintoSocialInclusionforVictorianswithaDisability Submittedby:

Deakin�University���AProf�Erin�Wilson� � Page�5�of�43�

as�explained�by�Saunders�et�al�(2007),�is�to�identify�'what�constitutes�essential�items���things�that�no�one�should�have�to�go�without�in�Australia�today'�(viii).�Following�this,�deprivation�is�'measured�by�identifying�those�who�do�not�have�and�cannot�afford'�the�essential�items�(Saunders�et�al,�2007:�ix).�This�captures�the�definitional�criteria�of�deprivation�that�those�who�do�not�have�the�items�lack�them�as�a�result�of�a�lack�of�resources��rather�than�choice(Saunders�et�al,�2007:10).�Saunders�et�al�(2007)�identify�ten�items�of�deprivation�(ie�identified�as�essential�and�linked�to�affordability)�ranked�most�highly�by�respondents.�These�are:�

o medical�treatment�if�needed�

o warm�clothes�and�beddding�if�it's�cold�

o a�substantial�daily�meal�

o able�to�buy�prescribed�medicines�

o dental�treatment�if�needed�

o a�decent�and�secure�home�

o school�activities�/outings�for�children�

o annual�dental�check�up�for�children�

o a�hobby�or�leisure�activity�for�children�

o a�roof�and�gutters�that�don't�leak�(Saunders�et�al,�2007:52).�

Lack�of�participation�in�a�range�of�norm�referenced�social,�economic�and�other�activities�

The�concept�of�participation�appears�to�be�common�across�a�range�of�definitions�of�social�exclusion.�Burchardt�et�al�(2002)�states�that�'An�individual�is�socially�excluded�if�he�or�she�does�not�participate�in�key�activities�in�the�society�in�which�he�or�she�lives'�(Burchardt,�Le�Grand�and�Piachaud,�2002,�p.30�quoted�in�Saunders�et�al�2007,�p.�13,�Hayes�et�al,�2008,�p.�5).��Building�on�this�definition,�Saunders�and�Wong�(2009)�align�social�exclusion�with�'being�denied�the�opportunity�to�participate�in�activities�that�are�commonplace�or�customary�in�society'�(Saunders�&�Wong,�2009:�12).�

Earlier�discussion�has�suggested�that�the�locus�of�'activities'�of�participation�is�varied,�given�it�is�based�on�those�customary�to�or�valued�by�society,�and�could�include�'economic,�social,�cultural�or�political�arenas'�as�identified�by�Levitas�et�al�(p.9�quoted�in�Saunders�et�al,�2007,�p.�12).��Different�authors�and�researchers�include�and�omit�different�arenas�of�participation�from�their�understanding�or�focus�on�social�exclusion.��For�example,�Burchardt�et�al�(2002)�in�the�CASE�definition�of�social�exclusion�include:�Production�(also�mentioned�above�as�having�relevance�to�definitions�of�poverty�and�deprivation)��participation�in�economically�or�socially�valued�activities;�Political�engagement���involvement�in�local�or�national�decision�making;�and�Social�interaction���integration�with�family,�friends�and�community.�The�PSE�Survey�included�a�somewhat�different,�though�overlapping�range�of�participation�arenas:�labour�

Page 6: InquiryintoSocialInclusionforVictorianswithaDisability … · 2014-09-15 · DeakinUniversityAProfErinWilson Page1of43 InquiryintoSocialInclusionforVictorianswithaDisability Submittedby:

Deakin�University���AProf�Erin�Wilson� � Page�6�of�43�

market��exclusion;�service�exclusion,�where�services�encompass�public�transport,�play�facilities�and�youth�clubs,�and�basic�services�inside�the�home�(gas,�electricity,�water,�telephone);�and�exclusion�from�social�relations�which�includes:�

� non�participation�in�common�activities�(defined�as�being�regarded�as�essential�by�a�majority�of�the�population);�

� the�extent�and�quality�of�social�networks;�

� support�available�in�normal�times�and�in�times�of�crisis;�

� disengagement�from�political�and�civic�activity;�and�

� confinement,�resulting�from�fear�of�crime,�disability�or�other�factors�(Hayes�et�al,�2008:�7,�Saunders�et�al,�2007;�Palmer,�MacInnes�and�Kenway,�2006;�Parekh�et�al,�2010).�

Many�of�these�topics�have�also�been�canvassed�in�Australian�Bureau�of�Statistics�general�population�surveying��including:�family�and�community�involvement,�crime�and�feelings�of�safety;�attendance�at�culture�and�leisure�venues;�sports�attendance�and�participation;�social�networks�and�social�participation;�as�well�as�participation�in�education�and�employment;�and�use�of�internet�technologies�(ABS,�GSS,�2010).�Data�in�relation�to�Australians�with�disability�is�available�in�relation�to�these�categories�in�a�compilation�report�by�the�ABS�(2011)�Social�Participation�of�People�with�a�Disability�2011,�which�collates�data�from�the�Survey�of�Disability,�Ageing�and�Carers��(ABS,�2009),�General�Social�Survey�(ABS�2006),�and�the�Time�Us�Survey�(ABS,�2006).�While�not�explicitly�reporting�on�social�exclusion,�the�overlap�of�conceptual�areas��is�notable,�and�has�been�used�to�inform�social�exclusion�research�(eg�Saunders�et�al,�2007).�

Three�arenas�of�participation�receiving�repeated�focus�in�social�exclusion�research��are�those�of�economic�participation�or�exclusion;�service�exclusion;�and�social�exclusion.�This�is�not�to�suggest�that�other�arenas�such�as�political�or�cultural�(or�indeed�other�arenas�of�life�such�as�spiritual�or�religious�participation)�do�not�warrant�equal�attention,�they�have�simply�not�received�it�to�date�within�the�context�of�explicit�social�exclusion�studies,�particularly�in�Australia.��

The�interconnection�between�elements�of�social�exclusion�

Many�authors�identify�the�role�of�society�in�creating�social�exclusion.�As�explained�by�Saunders�et�al,�'Unlike�the�focus�of�poverty�on�a�single�dimension�(lack�of�resources),�exclusion�is�a�multi�dimensional�concept,�designed�to�highlight�the�role�of�institutional�structures�and�community�attitudes�in�creating�the�barriers�that�lead�to�exclusion,�the�role�and�nature�of�voluntary�as�well�as�enforced�exclusion�or�withdrawal,�the�importance�of�relational�issues,�the�denial�of�social�rights,�and�the�importance�of�the�family�and�community�context�in�shaping�exclusion�at�the�individual�level'�(Saunders�et�al,�2007:12�13).�

Atkinson�(1998,�cited�in�Saunders�et�al,�2007:11)�argued�that�one�of�the�core�ideas�of�social�exclusion�is�that�of�agency,�'the�idea�that�people�are�excluded�by�choices�of�their�own,�or�by�the�acts�of�others'�(Saunders�et�al,�2007:11).�These�ideas�are�linked�to�Sen's�(2001)�analysis�of�social�exclusion�who�argues�that�a�core�feature�is�the�'relational�features�of�the�deprivation�of�capability'�(Sen,�2001:6,�quoted�in�

Page 7: InquiryintoSocialInclusionforVictorianswithaDisability … · 2014-09-15 · DeakinUniversityAProfErinWilson Page1of43 InquiryintoSocialInclusionforVictorianswithaDisability Submittedby:

Deakin�University���AProf�Erin�Wilson� � Page�7�of�43�

Saunders�et�al,�2007:11).�Amartya�Sen�has�explored�the�complexity�of�comparative�assessment�of�social�equality,�social�justice�and�quality�of�life�and�proposed�the�concept�of�'capabilities',�or�'what�people�are�actually�able�to�do�and�to�be'�(Nussbaum,�2003:�33).�Sen�recognises�great�diversity�in�the�human�condition�and�that�individuals�both�require�differing�levels�of�resources�as�well�as�have�'differing�abilities�to�convert�actual�resources�into�functioning'�(Nussbaum,�2003:�25).�An�often�cited�example�used�by�Sen�is�that�of�the�person�in�a�wheelchair�who�will�require�more�resources�for�mobility�than�a�person�who�is�not�similarly�impaired�in�order�to�achieve�the�same�ability�to�move�around�(Nussbaum�2003:�35).�He�argues�that�this�focus�highlights�the�barriers�preventing�the�actualising�of�resources�or�rights.�Sen's�concept�overlaps�with�that�of�human�rights,�in�that�he�sees�rights�as�being�enabled�or�present�only�'if�there�are�effective�measures�to�make�people�truly�capable...'�(Nussbaum,�2003:38).�This�places�responsibility�with�society�and�the�state�to�take�action�and�'to�think�from�the�start�about�what�obstacles�there�are�to�full�and�effective�empowerment�for�all�citizens,�and�to�devise�measures�that�address�these�obstacles'�(Nussbaum,�2003:�39).�This�set�of�understandings�has�significant�resonance�with�the�social�model�of�disability�that�now�underpins�the�United�Nations�Convention�on�the�Rights�of�Person�with�Disabilities.�As�argued�by�Navanethem�Pillay,�UN�High�Commissioner�for�Human�Rights,�'the�Convention�views�disability�as�a�‘pathology�of�society’,�that�is,�as�the�result�of�the�failure�of�societies�to�be�inclusive�and�to�accommodate�individual�differences'�(Office�of�the�Commissioner�for�Human�Rights�(2010)�Monitoring�the�Convention�on�the�Rights�of�Persons�with�Disabilities.�Guidance�for�Human�Rights�Monitors.�Professional�training�series�No.�17.�New�York�&�Geneva:�United�Nations,�p.�05.).�

This�literature�set�and�suite�of�concepts�underpinned�the�development�of�the�Deakin�University�and�Scope�'1�in�4�Poll'�on�Social�Inclusion.�The�poll�surveyed�adults�with�a�disability�in�Australia�in�regard�to�their�current�level�of�social�inclusion.�The�survey�drew�on�the�domains�of�the�Social�Inclusion�framework�used�by�Saunders�et�al�(2007�&�2008)�and�added�sub�domains�to�these,�as�follows:�

– Social�exclusion�(Disengagement)�e.g.�feel�part�of�the�community�

• Social�contact�

• Participation�

• Group�membership�

• Support�

• Feeling�valued�and�belonging�

• Outlook�(for�the�future)�

– Service�exclusion��e.g.�access�to�medical�services�

• Medical�

• Disability�

• Public�facilities��

– Economic�exclusion��e.g.�having�enough�money�to�get�by�on�

Page 8: InquiryintoSocialInclusionforVictorianswithaDisability … · 2014-09-15 · DeakinUniversityAProfErinWilson Page1of43 InquiryintoSocialInclusionforVictorianswithaDisability Submittedby:

Deakin�University���AProf�Erin�Wilson� � Page�8�of�43�

• Assets�

• Essential�elements��

Question�items�were�selected�and�adapted�from�a�range�of�published�sources�(over�80�items�identified�in�multiple�studies)�(Moore,�M.;�Hagiliassis,�N.;�McGillivray,�J.;��Wilson,�E.;�Campain,�R.;�Graffam,�J.�&�Bink,�M.�(2010).�Measuring�social�inclusion�of�people�with�a�disability�in�Australia:�the�first�national�1�in�4�poll.�45th�Annual�ASSID�Australasian�Conference,�Brisbane,�September�2010).��This�approach�did�not�include�a�reference�to�the�political�domain�of�social�inclusion,�as�this�had�been�previously�researched�by�Scope�in�a�previous�poll.�Future�polls�on�social�inclusion�would�rectify�this�exclusion.�

In�addition�to�items�relating�to�measuring�social�inclusion,�literature�was�reviewed�to�identified�the�known�barriers�to�social�inclusion�for�people�with�a�disability.�This�data�was�used�to�generate�a�further�survey�question�in�relation�to�the�things�that�would�most�improve�social�inclusion�if�they�were�changed.�Barriers�identified�included:��

� attitudes�of�others�

� physical�access�to�places�

� others�being�able�to�understand�the�way�I�communicate�

� transport�

� less�rules�and�red�tape�

� being�listened�to�

� feeling�safer��

� services�and�supports�

� money�

� better�health�

� housing�

� aids�and�equipment�

� options�to�do�what�is�desired��

� people�to�do�things�with�

� self�esteem/self�image�

� employment�

� accessible�information�(Moore,�M.;�Hagiliassis,�N.;�McGillivray,�J.;��Wilson,�E.;�Campain,�R.;�Graffam,�J.�&�Bink,�M.�(2010).�Measuring�social�inclusion�of�people�with�a�disability�in�Australia:�

Page 9: InquiryintoSocialInclusionforVictorianswithaDisability … · 2014-09-15 · DeakinUniversityAProfErinWilson Page1of43 InquiryintoSocialInclusionforVictorianswithaDisability Submittedby:

Deakin�University���AProf�Erin�Wilson� � Page�9�of�43�

the�first�national�1�in�4�poll.�45th�Annual�ASSID�Australasian�Conference,�Brisbane,�September�2010).��

Tan,�Boon�Siong�(2013)�What�are�the�negative�attitudes�experienced�by�people�with�disability�in�Australia,�and�do�they�differ�according�to�disability�type�or�severity�of�disability?�Honours�Thesis,�School�of�Health�and�Social�Development,�Deakin�University�(Supervised�by�AProf�E�Wilson�an�Dr�K�Murfitt).�

Excerpts:�

Background�

People�with�a�disability�in�Australia�have�identified�negative�societal�attitudes�as�the�most�prevalent�issue�affecting�community�inclusion�and�access�to�healthcare�and�services.�Developing�a�better�understanding�of�these�attitudes�is�critical�to�targeting�change�strategies�to�address�these�attitudinal�barriers.�

Aim�&�Research�Question(s)�

The�study�aimed�to�investigate�experiences�of�negative�attitude�as�reported�by�adults�with�a�disability�in�Australia.�The�study�sought�to�determine�(1)�what�negative�attitudes�are�experienced�by�adults�with�disability�within�Australia,�(2)�whether�negative�attitudes�experienced�by�people�with�disability�differ�according�to�disability�types,�and�(3)�whether�the�severity�of�disability�has�an�impact�on�perceived�negative�attitudes�experienced�by�people�with�disability.��

Participants�

A�total�of�539�adults�with�a�range�of�disabilities�responded�to�the�survey;�however�only�472�responses�were�analysed.�(NOTE:�this�included�39%�from�Victoria).�

Method�

The�current�research�was�part�of�a�larger�study�called�the�‘1�in�4�Poll’�which�was�developed�by�Deakin�and�Scope,and�investigated�negative�attitudes�experienced�by�people�with�disability.�Quantitative�methods�were�engaged�in�this�study.�Three�primary�statistical�analyses�were�conducted�comparing�the�independent�variables�(1)�disability�groups�and�(2)�severity�of�disability�against�the�negative�attitudes�reported�by�people�with�disability.�Factor�analysis�was�also�conducted�to�determine�whether�specific�factors�would�reveal�a�general�trend�in�which�certain�negative�attitudes�correlate�together.��

Discussion�

In�this�study,�lack�of�knowledge�about�disability�was�a�recurring�theme�identified�by�people�with�disability.�Factor�analysis�revealed�that�knowledge�as�a�factor�caused�the�greatest�degree�of�difficulties�to�people�with�disability.�Additionally,�four�of�the�seven�most�frequently�experienced�negative�attitude�items�were�related�to�the�factor�of�knowledge,�with�69%�or�more�of�people�with�disability�reporting�that�they�experienced�these�four�negative�attitudes�within�the�past�year�alone.�Over�84%�of�respondents�had�

Page 10: InquiryintoSocialInclusionforVictorianswithaDisability … · 2014-09-15 · DeakinUniversityAProfErinWilson Page1of43 InquiryintoSocialInclusionforVictorianswithaDisability Submittedby:

Deakin�University���AProf�Erin�Wilson� � Page�10�of�43�

experienced�negative�attitudes�in�relation�to�the�item�about�lack�of�knowledge�and�understanding�of�disability�over�the�past�year.�Furthermore,�lack�of�knowledge�and�understanding�of�a�person’s�disability�was�also�reported�to�cause�people�with�disability�the�greatest�degree�of�difficulty.�In�addition�within�the�knowledge�factor,�71%�of�respondents�experienced�great�difficulty�with�people�not�believing�the�extent�of�disability.�Additionally,�this�attitude�caused�the�second�greatest�impact�caused�to�people�with�disability,�behind�lack�of�knowledge�and�understanding.��Furthermore,�more�than�69%�of�people�with�disability�felt�that�the�public�did�not�know�how�to�behave�around�them�and�tended�not�to�listen�to�or�ignored�them.�Therefore,�lack�of�knowledge�and�awareness�of�disability�appears�to�be�causing�a�great�degree�of�difficulty�on�the�lives�of�people�with�disability.�This�resonates�with�past�studies�that�have�reported�that�the�lack�of�knowledge�has�been�found�to�result�in�fear�and�uncertainty�about�how�to�interact�and�engage�with�people�with�disability�(Deane,�2009;�Grewal�et�al.,�2002;�Hunt�&�Hunt,�2004;�Stanlland,�2009).��

Within�the�factor�of�competency,�the�current�study�found�that�people�with�disability�reportedly�experienced�relatively�high�frequencies�of�negative�attitudes�in�relation�to�capabilities.�Over�69%�of�respondents�reportedly�experienced�instances�where�people�treated�people�with�disability�as�less�intelligent�and�incapable�of�making�decisions.�These�two�negative�attitude�items�were�within�the�top�five�most�frequently�experienced�negative�attitude�items.�Furthermore�respondents�experienced�instances�where�people�treated�them�more�like�a�child�than�an�adult�and�that�the�public�assumed�that�they�couldn’t�think�or�talk�for�themselves.�The�notion�that�people�with�disability�are�less�capable�and�competent�undermines�people’s�ability�to�see�people�with�disability�as�autonomous�individuals;�suggesting�that�the�public�views�people�with�disability�as�needing�to�be�looked�after�and�unable�to�perform�tasks�or�make�decisions�as�compared�to�people�without�a�disability.�Similar�findings�were�noted�within�the�literature�(Grewal�et�al.,�2002;�Stanlland,�2009).��

Lastly�within�the�factor�of�hostility,�it�appears�that�negative�attitude�items�in�relation�to�bullying�and�violent�behaviours�were�relatively�low.�The�results�suggest�that�negative�attitudes�in�relation�to�bullying�and�violent�behaviours�were�not�as�commonly�experienced.��Hostility�as�a�factor�comprised�of�the�three�least�experienced�negative�attitude�items,�including�attitudes�in�relation�to�bullying�and�violent�behaviours�along�with�not�being�welcomed�in�the�public.�However,�despite�this�comparative�lower�frequency,�the�current�study�revealed�that�over�34%�and�almost�50%�of�respondents�still�reported�having�experienced�violent�and�bullying�behaviours�respectively,�indicating�that�there�is�still�a�sizeable�proportion�of�people�with�disability�(i.e.�one�in�three)�experiencing�prejudicial�behaviours�in�everyday�life.��

The�current�study�depicts�that�indeed�people�with�a�disability�frequently�experience�negative�attitudes.�Of�the�twenty�negative�attitude�items�tested�in�this�study,�seventeen�of�them�had�a�frequency�of�50%�or�higher�among�the�respondent�population.�This�translates�to�one�in�two�people�with�disability�reportedly�experiencing�negative�attitudes�at�least�once�in�the�past�year�alone.��

Negative�Attitudes�by�Disability�Group�The�majority�of�studies�to�date�have�evidenced�more�negative�attitudes�towards�people�with�intellectual�

Page 11: InquiryintoSocialInclusionforVictorianswithaDisability … · 2014-09-15 · DeakinUniversityAProfErinWilson Page1of43 InquiryintoSocialInclusionforVictorianswithaDisability Submittedby:

Deakin�University���AProf�Erin�Wilson� � Page�11�of�43�

disabilities�as�compared�to�those�with�physical�disabilities�(Caldwell,�2007;�Harasymiw�&�Horne,�1976;�Scior,�2011;�Stanlland,�2009;�Thompson�et�al.,�2011;�Tur�Kaspa,�Weisel�&�Most,�2000;�White�&�Clark,�2010).��However�relatively�few�studies�have�looked�into�comparing�negative�attitudes�between�disability�groups�outside�of�intellectual�and�physical.��The�current�study�expands�on�the�limited�studies�within�the�literature�by�recruiting�people�with�a�range�of�disabilities.�The�current�study�supports�the�evidence�in�relation�to�more�negative�attitudes�experienced�by�people�with�intellectual/learning�disabilities�compared�to�people�with�a�physical/diverse�disability,�and�adds�new�data�on�the�hierarchy�of�attitudes�towards�disability�including�sensory/speech�and�psychiatric�disability.�Additionally,�the�current�study�identifies�differences�in�types�of�attitudes�experienced�by�people�with�different�disabilities.�

Results�from�the�current�study�revealed�that�attitudes�overall�experienced�by�people�with�disability�were�negative;�however�there�were�differences�reported�across�different�disability�groups.�For�instance,�for�the�data�resulting�in�significant�differences,�people�with�an�intellectual/learning�disability�experienced�a�greater�degree�of�negative�attitudes�as�compared�to�people�with�physical/diverse�disability.�This�was�especially�apparent�in�relation�to�the�public’s�expectations�of�the�capabilities�of�people�with�disability�in�forming�relationships�and�in�being�treated�like�a�child.�Furthermore�it�seems�that�people�with�psychiatric�disability�also�experienced�greater�difficulty�from�negative�attitudes�in�relation�to�the�public’s�expectation�of�people�with�disability�forming�close�relationships�compared�to�people�with�physical/diverse�disability.�Similarly,�it�was�found�that�people�with�psychiatric�disability�experienced�more�difficulty�with�the�negative�attitudes�in�relation�to�the�public’s�belief�of�the�extent�of�disability�compared�to�people�with�physical/diverse�and�people�with�intellectual/learning.�Thus�it�may�seem�that�differences�in�negative�attitudes�experienced�by�people�with�varying�disability�may�be�dependent�on�the�negative�attitude�theme.��

Further�analysis�using�the�three�factors�of�competency,�knowledge�and�hostility,�found�that�only�under�the�factor�of�hostility�were�people�with�intellectual/learning�disability�and�people�with�psychiatric�disability�experiencing�more�difficulty�compared�to�other�disability�groups.�Further�analysis�revealed�that�people�with�sensory/speech�disability�had�experienced�significantly�more�difficulty�with�violent�and�bullying�behaviours�compared�to�people�with�an�intellectual/learning�and�people�with�psychiatric�disability.�However�the�same�was�not�found�within�the�factor�of�competency�and�knowledge,�indicating�that�regardless�of�disability�group,�people�experienced�negative�attitudes�in�relation�to�competency�and�knowledge�to�a�similar�degree,�and�these�attitudes�caused�the�greatest�degree�of�difficulty�to�people�with�disability.��

One�explanation�for�these�divergent�attitudes�towards�different�groups�of�disability�is�that�a�hierarchy�seems�to�exist�with�a�rank�ordering�of�the�most�accepted�to�least�accepted�disability�type�(Deal,�2006).�It�was�found,�as�proposed�by�Harasymiw�&�Horne�(19760,�that�an�impairment�that�conforms�most�closely�to�the�norms�set�by�society�would�be�more�accepted.��

A�related�explanation�for�this�hierarchy�of�disability�may�be�due�to�the�visibility�of�disability.�Grewal�et�al.�(2002)�suggest�that�people�may�be�more�immediately�aware�of�a�person�with�more�visible�disabilities�such�as�physical,�vision�and�communication�disabilities�and�be�more�willing�to�help�out.�However,�in�

Page 12: InquiryintoSocialInclusionforVictorianswithaDisability … · 2014-09-15 · DeakinUniversityAProfErinWilson Page1of43 InquiryintoSocialInclusionforVictorianswithaDisability Submittedby:

Deakin�University���AProf�Erin�Wilson� � Page�12�of�43�

relation�to�people�with�non�visible�disabilities,�such�as�intellectual/learning�disabilities�psychiatric�disabilities,�people�may�not�take�account�of�their�impairment�and�may�not�immediately�notice�that�these�people�have�a�disability�and�be�less�willing�to�lend�a�helping�hand�(Grewal�et�al.,�2002).�The�literature�suggests�that�when�no�clear�physical�symptoms�are�present,�the�public�are�often�sceptical�and�overtly�dismissive�and�will�question�the�veracity�and�reliability�of�the�person�with�an�invisible�disability�(Davis,�2005)�

Overall,�while�this�study�confirms�previous�studies�showing�attitudes�to�be�more�negative�towards�people�with�intellectual/learning�and�psychiatric�disabilities,�the�situation�appears�to�be�more�complex�than�this�finding�suggests.�Different�disability�groups�experience�higher�frequencies�and�greater�difficulty�in�relation�to�specific�attitude�items.�The�details�of�this�study�offer�some�specific�directions�for�attitude�change�programs�in�relation�to�each�group,�and�overall�suggest�that�such�activities�need�to�better�understand�the�differential�experience�of�attitudes�dependent�on�disability�type.�

Negative�Attitudes�by�Severity�of�Disability�The�current�study�is�only�one�of�a�small�number�of�studies�to�investigate�negative�attitudes�experienced�by�people�with�disability�according�to�multiple�different�severity�levels.�Of�the�studies�conducted,�results�indicate�that�people�with�greater�severity�of�disability�had�experienced�greater�negative�attitudes�than�compared�to�people�with�lesser�severity�(Hannon,�2009;�Scior,�2011).�The�current�study�investigated�negative�attitudes�experienced�across�multiple�levels�of�severity,�and�adds�new�data�to�this�field.�

The�current�study�demonstrated�that�significant�difference�existed�in�difficulties�caused�by�negative�attitudes�according�to�severity�level.�Across�all�negative�attitude�items,�people�with�a�mild�level�of�disability�had�experienced�significantly�less�difficulty�with�negative�attitudes�compared�to�people�with�profound,�severe�and�moderate�severity�level.�In�addition,�factor�analysis�revealed�significant�differences�between�severity�levels�along�the�three�factors�of�competence,�knowledge�and�hostility.�In�general,�people�with�a�greater�level�of�severity�experienced�more�negative�attitudes�across�all�factors�of�competency,�knowledge�and�hostility.�One�possible�explanation�is�that�when�a�person’s�functioning�or�biological�composition�does�not�fall�within�the�‘normal’�standards,�they�are�said�to�be�inferior�and�are�often�subjected�to�rejection�and�social�exclusion�within�society�(Hannon,�2009).�As�people�with�profound�disability�are�defined�as�requiring�assistance�with�one�or�more�core�activity�tasks�(ABS,�2009),�it�may�be�that�when�the�functioning�of�an�individual�falls�further�from�what�seems�to�fit�within�the�normal�standards�of�society,�they�tend�to�be�subjected�to�more�negative�societal�attitudes.�Thus�there�seems�to�be�differences�experienced�based�on�the�severity�of�disability�according�to�core�activity�limitations.�

b)�identify�the�nature�and�scale�of�relative�inclusion�(exclusion)�and�participation�of�Victorians�with�a�disability�in�the�economic,�social�and�civil�dimensions�of�society.�

Related�points:��

3.4�What�does�social�inclusion�for�Victorians�with�a�disability�look�like�now?�

4.1What�are�the�barriers�to�meaningful�social�inclusion�for�Victorians�with�a�disability?�

Page 13: InquiryintoSocialInclusionforVictorianswithaDisability … · 2014-09-15 · DeakinUniversityAProfErinWilson Page1of43 InquiryintoSocialInclusionforVictorianswithaDisability Submittedby:

Deakin�University���AProf�Erin�Wilson� � Page�13�of�43�

4.2�In�what�ways�for�Victorians�with�a�disability�participate�in�the�economic,�social�and�civil�dimensions�of�society?�

Layton,�N;�Colgan,�S;�Wilson,�E;��Moodie,�M�&�Carter,�R.�(2010).�The�Equipping�Inclusion�Studies:�Assistive�Technology�Use�and�Outcomes�in�Victoria.��Burwood:�School�of�Health�and�Social�Development�and�Deakin�Health�Economics,�Deakin�University.�

Excerpts:�

In� 2008,� the� Victorian� Aids� and� Equipment� Alliance� (AEAA)� was� awarded� research� funding� from� the�William�Buckland�Foundation�to�undertake�research�into�AT�provision�in�Victoria.�The�AEAA�funded�two�studies�conducted�by�two�teams�from�Deakin�University.��Study�1,�The�Equipment�Study,�focused�on�the�experience� of� 100� Victorian� adults� with� a� disability� using� AT� and� the� impact� of� this� in� their� lives.� In�particular,�the�study�sought�to�identify�the�range�of�AT�used,�the�life�domains�enabled�by�this�use,�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,�difficulty�and�satisfaction.��Study�2,�The�Economic�Study,�had�two�components:�1)�a�systematic�literature�review� of� the� economic� evaluation� of� AT� interventions;� and� 2)� an� economic� evaluation� of� the� cost�consequences�and�cost�utility�of�optimal�AT�interventions�based�on�data�from�Study�1�collected�from�the�sub�set�of�eight�individuals.��

Current�level�of�participation�in�life�areas�enabled�by�AT�

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)�were�populated�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�based�on�insufficient�AT.�

Constraints�on�participation�

Most� respondents� identified� difficulty� levels� of� ‘moderate’� to� ‘moderate� to� severe’� (3�4� on� a� 6� point�scale)� across� life�areas.� The�area�of� Personal� Life�evidenced� the�highest� level� of�difficulty� followed�by�Recreational�and�Leisure�Life,�and�Cultural�Life.���

The�100�survey�respondents�provided�a�detailed�set�of�qualitative�data�that�uniformly�spoke�to�levels�of�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,�participants�were�dissatisfied�with�their�participation�levels�in�more�than�a�third�(39%)�of�their�preferred� life� areas� and� activities,� with� some� activities� (5%)� evidencing� complete� restriction� of�participation.�

Page 14: InquiryintoSocialInclusionforVictorianswithaDisability … · 2014-09-15 · DeakinUniversityAProfErinWilson Page1of43 InquiryintoSocialInclusionforVictorianswithaDisability Submittedby:

Deakin�University���AProf�Erin�Wilson� � Page�14�of�43�

Increasing�outcomes�through�increased�provision�of�AT�Solutions�

Identification�of�AT�that�would�meet�individuals’�needs�

Overall,�74%�of�the�100�survey�respondents�identified�unmet�need�for�AT�solutions�to�achieve�their�life�aspirations.�These�desired�solutions�included�aids�and�equipment�(identified�by�70%�of�respondents�and�including�up�to�nine�additional�/�alternative�devices),�home�modifications�(46%�of�respondents),�environmental�modifications�in�the�community�(52%�of�respondents)�and�personal�care�(24%�of�respondents).�The�majority�of�respondents�appear�to�be�technically�eligible�for�Victorian�Aids�and�Equipment�Program�(VAEP)��subsidy�given�their�income�and�residential�arrangements.�

Increased�participation�

The�eight�case�study�participants�identified�an�increase�in�participation�rates�between�0%�and�28%,�with�an�average�increase�of�12%�as�a�result�of�the�hypothetical�provision�of�optimal�AT.�Survey�respondents�anticipated�that�the�provision�of�desired�AT�would�improve�participation�in�life�areas,�particularly�in�the�area�of�Personal�Life� (for�68%�of� respondents),� in�Social� Life� (48%),�and� in�Recreation�and�Leisure�Life�(38%).�

Increased�satisfaction�in�participation�

The�eight�case�study�participants�rated�their�anticipated�satisfaction�with�participation� levels�following�the�hypothetical�provision�of�optimal�AT.�Ratings�evidenced�a�significant�increase�in�satisfaction�ranging�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�optimal�AT�solution).�

Increased�health�related�quality�of�life�

Seven� of� the� eight� case� study� participants� re�rated� their� quality� of� life� following� the� hypothetical�provision�of�their�optimal�AT�solution.�All�except�one�participant�evidenced�increases�in�AQoL�score�with�four� showing� gains� of� 10%� or� more,� in� a� range� between� 4� �� 33%� improvement.� This� suggests� that�investment�in�AT�will�return�gains�in�quality�of�life.�

Cost�of�change�

Study�2�demonstrated� that� these� improvements�can�be�achieved�at�modest� cost� for�many�AT�clients.��The�incremental�cost�of�moving�to�an�optimal�package�of�care�was�small�for�half�of�the�participants�(less�than�$6,200);�moderate� for� two� ($11,116;� $14,370);� and�high� for� one�participant� ($29,534).� � In�other�words,�from�a�government�affordability�perspective,�the�change�to�an�optimal�package�of�AT�for�these�participants�did�not�entail�an�unrealistic�amount�of�additional�expenditure.�

Page 15: InquiryintoSocialInclusionforVictorianswithaDisability … · 2014-09-15 · DeakinUniversityAProfErinWilson Page1of43 InquiryintoSocialInclusionforVictorianswithaDisability Submittedby:

Deakin�University���AProf�Erin�Wilson� � Page�15�of�43�

c)�understand�the�impact�of�Victorian�government�services�and�initiatives�aimed�at�improving�inclusion�and�participation.�

Related�points:��

4.4�How�effective�have�awareness�campaigns�been�in�improving�social�inclusion�for�people�with�a�disability�in�Victoria?�

4.5�How�can�social�inclusion�and�the�participation�of�people�in�the�community�be�effectively�measured?�

4.6�What�tools�can�be�used�to�determine�if�there�have�been�improvements�or�changes�in�the�levels�of�social�inclusion�for�people�with�a�disability�over�time?�

6.1�How�effective�are�services�and�initiatives�designed�to�enhance�the�social�inclusion�of�Victorians�with�a�disability?�

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�attitude�change�of�community�members�towards�people�with�a�disability.� In�recognition�of�the�explicit�role�of�disability�awareness�programs�to�date�as�a�mechanism�of�attitude�change,�the�study�also�aimed�to�broadly�determine�the�extent�and�type�of�disability�awareness�programs�in�Victoria,�and�to�assess�the�outcomes� of� these.� Finally,� the� study� aimed� to� explore� possible�methods� for� better� determining� the�outcomes�of�such�programs�in�terms�of�their�effect�on�attitude�and�behaviour�change.�

Within�Victoria,� thirteen�programs�were� found�to�be�currently� conducting� formal�disability�awareness�programs.�This�included�the�programs�of�eleven�agencies�as�well�as�Scope’s�two�community�awareness�programs� that� are� each� designed� for� different� target� audiences.� Each� agency� is� a� not� for� profit�organisation�with�a�focus�on�disability.���

The�majority�of�programs�are�designed�for�general�community�groups�and�school�groups.��School�groups�consist�of�students�from�preparatory�to�year�twelve,�covering�all�levels�of�schooling.��Two�(15%)�of�the�programs�conducted�in�Victoria�are�aimed�at�specific�year�levels�in�schools.���

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�undertaking�courses�such�as�nursing�and�medicine.���

It�was�found�that�beyond�raising�general�awareness�about�people�with�disabilities�within�the�community,�most�organisations�did�not�clearly�articulate�the�specific�intended�outcomes�of�their�programs.��

Page 16: InquiryintoSocialInclusionforVictorianswithaDisability … · 2014-09-15 · DeakinUniversityAProfErinWilson Page1of43 InquiryintoSocialInclusionforVictorianswithaDisability Submittedby:

Deakin�University���AProf�Erin�Wilson� � Page�16�of�43�

In�the�absence�of�this�data,�researchers�of�this�project�postulated�a�series�of�outcomes�that�aimed�to�reflect�the�intentions�discussed�or�observed�within�programs.�Program�intentions�and�focus�were�then�assessed�against�this�framework,�via�the�mechanism�of�discussion�or�observation.��

As�discussed�above,�researchers�postulated�four�main�outcome�goals�that�an�awareness�program�may�work�towards.��These�intended�outcomes�are�as�follows:�

Table�1:�Disability�Awareness�Program�Outcome�Framework�

Outcome�level�

Outcome�theme� Outcome�description�

1.� General�awareness� Raising�general�awareness�that�there�are�people�in�the�community�who�have�disabilities.��Raising�disability�from�an�invisible�individual�issue�to�a�visible�community�issue.�

2.� Understanding�issues� Learning�what�the�needs,�issues�and�experiences�people�with�a�disability�may�have.�

3.� Attaining�specific�knowledge�and�skills�

Fostering�the�skills�to�address�the�needs�of�people�with�a�disability.��Gaining�the�knowledge�and�skills�to�identify�strategies�and�actions.��For�example�developing�communication�skills�or�understanding�of�communication�aids.�

4.� Taking�action� Individual�or�group�action�concerning�disability�issues,�shown�through�observed�behaviour�change,�policy�change�or�structural�change�

All�(100%)�of�the�disability�awareness�programs�analysed�in�this�study�involve�intended�outcomes�1�and�2:�that�is,�raising�general�awareness�of�disability;�and�learning�what�the�needs,�issues�and�experiences�people�with�a�disability�may�have.�

Most�(77%)�of�the�programs�appear�to�include�aspects�of�outcome�3:�developing�the�skills�to�address�the�needs�and�issues�people�with�a�disability�may�face.��These�programs�not�only�discuss�the�needs�and�issues�surrounding�people�with�disabilities,�but�also�how�to�address�these�needs�and�issues.��For�example,�some�of�the�programs�go�on�to�discuss�language,�what�words�can�be�offensive�and�what�words�are�more�appropriate�to�use�when�communicating�with�a�person�with�a�disability�or�when�discussing�disability�issues.��A�small�number�of�programs�discuss�ways�in�which�different�people�communicate�as�a�result�of�their�disability.��Through�these�programs,�participants�gain�knowledge�and�skills�that�would�enable�them�to�better�communicate�with�people�with�a�range�of�disabilities.��For�example�the�Victorian�Deaf�Society�teaches�a�few�basic�Auslan�(Australian�Sign�Language)�signs�throughout�their�awareness�

Page 17: InquiryintoSocialInclusionforVictorianswithaDisability … · 2014-09-15 · DeakinUniversityAProfErinWilson Page1of43 InquiryintoSocialInclusionforVictorianswithaDisability Submittedby:

Deakin�University���AProf�Erin�Wilson� � Page�17�of�43�

course.�Other�programs�provide�specific�strategies�for�interacting�or�working�with�people�with�a�disability.�

Three�programs�(23%)�were�identified�as�having�specific�behaviour�change�goals.��These�programs�specifically�name�behaviour�change�within�their�program�descriptions�and�plan�their�programs�accordingly.���The�Down�Syndrome�Association�of�Victoria�and�Latrobe�City�Rural�Access�awareness�programs�both�direct�their�programs�to�health�care�professionals�and�students.��These�programs�have�the�aim�of�encouraging�a�shift�away�from�a�pure�medical�focus�that�health�professionals�may�have�when�interacting�with�people�with�disabilities.��These�courses�encourage�health�staff�and�students�to�use�more�appropriate�language�with�patients�who�may�have�disabilities�as�well�as�their�families.��They�openly�encourage�behaviour�change�of�health�professionals�and�students�towards�people�with�disabilities,�aspiring�for�more�accessible�and�inclusive�health�services.���

Most�programs�have�a�general�long�term�goal�of�creating�a�more�inclusive�community�through�positive�behaviour�change�of�community�members�towards�all�people,�including�people�with�a�disability.��This�general�intention�makes�the�distinction�between�outcome�levels�3�and�4�somewhat�difficult.�However,�for�the�purposes�of�this�analysis,�outcome�level�4�is�understood�to�require�the�inclusion�of�enacting�behaviours�in�real�life�contexts�as�part�of�the�program,�or�deliberate�and�context�specific�planning�to�do�so.�With�this�definition�in�mind,�only�the�Scope�Young�Ambassador�(SYA)�program�(ie.�8%�of�all�programs)�evidences�activity�toward�outcome�level�4.�The�program�aims�for�positive�behaviour�change�towards�people�with�disabilities�among�the�participating�students.��The�program�intentionally�focuses�on�enacting�behaviours�through�various�learning�activities�that�require�specific�student�actions�in�real�life�contexts�(such�as�working�collaboratively�with�people�with�a�disability�in�a�service,�work,�or�project�setting).�Such�activities�have�also�resulted�in�some�structural�change�through�the�community�service�component�of�the�program.��For�example,�a�group�of�students�participating�in�the�SYA�program�created�a�‘beach�wheelchair�hire’�service�at�a�number�of�local�councils,�enabling�better�access�for�people�with�disabilities�to�Melbourne’s�beaches��

The�focus�on�attitude�change�through�collaborative�activity�between�people�with�and�without�a�disability�is�consistent�with�the�findings�from�the�literature,�previously�discussed,�that�highlights�this�approach�to�be�key�to�attitude�change.�

This�study�identifies�a�number�of�important�considerations�for�disability�awareness�programs,�in�terms�of�what�can�be�considered�to�bring�about�effective�attitude�change.�These�are�summarised�in�the�following�table.�

Table�2:�Key�program�ingredients�for�attitude�change�

1.� Contact� Direct�contact�between�program�participants�and�people�with�a�disability�is�likely�to�be�the�most�influential�form�of�attitude�change.�Features�of�direct�contact�should�include:��

� longevity�of�contact�(ie.�a�sustained�period�of�time);��

Page 18: InquiryintoSocialInclusionforVictorianswithaDisability … · 2014-09-15 · DeakinUniversityAProfErinWilson Page1of43 InquiryintoSocialInclusionforVictorianswithaDisability Submittedby:

Deakin�University���AProf�Erin�Wilson� � Page�18�of�43�

� the�ability/�time�to�get�to�know�each�other;��

� equal�status�of�people�with�and�without�a�disability;�and��

� a�focus�on�the�person�with�a�disability�as�connected�with�and�representative�of�other�people�with�a�disability;�

� mutual�work�on�shared�goal;�

� positive�shared�experiences.�

2.�� Longevity� Programs�that�are�longer�in�duration�rather�than�short,�one�off�activities�allow�time�for�attitude�change�to�build�incrementally.�

3.� Action� Programs�need�to�be�focused�on�behaviours�in�contexts�that�the�participant�has�control�over,�ie.�the�ability,�resources,�skills,�authority�to�enact.�That�is,�a�focus�on�actions�the�participant�can�do�in�their�everyday�context.�

4.�� Experience� Programs�need�to�be�personally�involving�and�experiential,�or�at�least,�complement�the�traditional�persuasive�message�approach�with�elements�of�this.�

Additionally,�there�is�some�evidence�to�suggest�that�some�groups�in�community�may�require�a�heightened�level�of�focus�than�others.�For�example,�people�over�25�years,�people�with�lower�levels�of�education,�and�people�without�previous�experience�of�disability,�are�all�likely�to�hold�more�negative�views�of�people�with�a�disability�(according�to�research�published�in�the�literature).�

At�present,�disability�awareness�programs�in�Victoria�appear�to�focus�on�what�is�described�in�this�research�as�the�first�and�second�levels�of�awareness:�making�people�with�a�disability�visible,�rather�than�invisible;�and�understanding�the�issues�facing�people�with�a�disability�(See�Table�1).���

Whilst�most�programs�include�a�focus�on�general�skills�development,�few�appear�to�focus�on�building�specific�skills�in�specific�contexts,�and�identifying�clear�action�or�behavioural�plans.��The�Disability�Awareness�Program�Outcome�Framework,�developed�by�researchers�here�(Table�1),�could�be�a�useful�framework�for�programs�to�review�their�aims�by.�This�needs�to�be�coupled�with�a�curriculum�and�delivery�strategy�consistent�with�the�key�program�ingredients�for�attitude�change,�listed�in�Table�2.�

Outcomes�framework�and�measurement�research,�Scope�and�Deakin�University�(summary�of�suite�of�research�activity)�

Summary:�

Page 19: InquiryintoSocialInclusionforVictorianswithaDisability … · 2014-09-15 · DeakinUniversityAProfErinWilson Page1of43 InquiryintoSocialInclusionforVictorianswithaDisability Submittedby:

Deakin�University���AProf�Erin�Wilson� � Page�19�of�43�

Researchers� from� Scope� and� Deakin� University� have� been�working� for� the� past� ten� years� on� the�development�of�an�outcomes� framework�relevant� to�capture�the�outcomes�of�services� to�support�the� desired� life� outcomes� for� people� with� disability.� This� work� has� generated� an� outcomes�framework,�initially�drawing�on�notions�of�citizenship,�and�tested�to�identify�its�ability�to�adequately�capture�a�full�range�of�life�outcomes�as�identified�by�the�UN�CRPD.�The�framework�is�below:�

Personal�Life:�� That� is,� in� the� area� of� health� and� function,� happiness,�wellbeing,�safety,�sense�of�independence�and�choice.�

Social�life:�� That�is,�in�the�area�of�friendship�and�relationship,�community�involvement�and�sense�of�belonging.�

Political�life:�� That�is,�in�the�area�of�having�a�say�about�things�that�affect�you�(eg�in�a�local�service�or�community�group,�about�your�area,�school,�funding�etc).�

Cultural�life:� �That�is,�being�involved�in�cultural�activities�(eg.�arts,�music,�theatre,�dance�at�any�level).�This�might�be�through�attending�activities�or�playing�an�active�part.�Or�being�part�of�your�own�cultural�group.�

Recreational�and�Leisure�life:�That�is,�being�involved�in�recreational�or�leisure�activities�at�any�level.�This�might�be�through�attending�activities,�playing�an�active�part�or�doing�what�you�enjoy.�

Economic�life:�� That�is�in�terms�of�your��finances,�employment�or�business.�

Educational�life:�� That�is,�any�aspect�of�your�education,�training,�personal�or�professional�development�

Spiritual�life:�� That�is,�any�aspect�of�your�religious�or�spiritual�activities.�

Your�Environment:�� That�is,�your��access�to�and�enjoyment�of�public�spaces�(eg�parks,�pools,�theatres,�shopping�centres,�public�transport�etc)�or�your�own�private�space�(eg.�your�home).�Making�environments�you�use�more�accessible�and�appropriate�(eg�playgroups,�kindergartens,�library,�etc).�

� (Wilson,� E.;� Hagiliassis,� N;� Nicola�Richmond,� K.� &� Mackay,� A.� (2007).� Measuring� the� outcomes� of�inclusive�communities.�42nd�ASSID�Conference,�Perth.;�Wilson,�E.;�Nicola�Richmond,�K.;��Hagiliassis,�N;��Campain,�R.&�Mackay,�A.,� (2008).�Defining�and�measuring� the�outcomes�of� inclusive� communities.�WA�National�Disability�Services�‘Living�in�the�West’�Conference,�Perth;�Wilson,�E.;�Nicola�Richmond,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�

Page 20: InquiryintoSocialInclusionforVictorianswithaDisability … · 2014-09-15 · DeakinUniversityAProfErinWilson Page1of43 InquiryintoSocialInclusionforVictorianswithaDisability Submittedby:

Deakin�University���AProf�Erin�Wilson� � Page�20�of�43�

engage.� International�Cerebral�Palsy�Conference�Sydney,�February�2009;�Wilson,�E.�&�Hagiliassis,�N.�(2012).� Measuring� outcomes� of� self� directed� services� and� supports.� National� Disability� Services,�'Preparing�for�the�new�world'�Conference,��Adelaide,�May�2012.)�

A�range�of�outcome�measurement�data�collection�tools�have�been�developed�and�trialed�including:�

� Outcomes�and�Impacts�Tool���(Wilson�&�Hagiliassis)���a�one�page�client�rating�of�the�impact�of�a�service�or�support�on�each�life�outcomes�area�ranging�from�very�negative�impact�to�very�positive�impact.�This�tool�has�been�used�to�evaluate�a�variety�of�funded�services�and�supports.�

� MOSS�(Measurement�of�Services�and�Supports)��(Wilson,�Hagiliassis,�Nicola�Richmond,�Mackay)���a�short�client�reported�data�collection�tool�to�evaluate�outcomes�of�a�goal�directed�service�or�support.�The�tool�is�supported�by�several�publications�including�a�Technical�Manual,�an�explanatory�Literature�Review,�a�Tool�Short�Form,�and�range�of�research�reports�in�which�the�tool�has�been�used�to�evaluate�outcomes�of�services.�

� The�Family�Coping�and�Capacity�Scale��(Hagiliassis,�Wilson,�and�McGrellis)���a�short�client�reported�scale�to�assess�the�impact�of�a�service�or�support�on�the�coping�and�capacity�elements�of�a�family,�specifically�designed�for�use�in�early�childhood�intervention�settings.�

� Individualised�Planning/Review�Tool�(Wilson�&�Campain)���a�tool�based�on�person�centred�planning�approach�to�capture�evaluation�data�in�relation�to�an�individual's�plan.�Publication�in�press�(Wilson,E.�&�Campain,�R.�(submitted)�Reflections�on�measuring�outcomes�of�individualised�plans�for�people�with�disability).�

Layton,�N;�Colgan,�S;�Wilson,�E;��Moodie,�M�&�Carter,�R.�(2010).�The�Equipping�Inclusion�Studies:�Assistive�Technology�Use�and�Outcomes�in�Victoria.��Burwood:�School�of�Health�and�Social�Development�and�Deakin�Health�Economics,�Deakin�University.�

Excerpts:�

Evaluative�comments�on�the�VAEP�and�other�government�AT�funding�programs:�

What�works�well�currently�in�the�VAEP��(Victorian�Aids�and�Equipment�Program)�

Forty�one�percent� (41%)�of�survey�respondents� identified�the�VAEP�as�their�main�source�of�funding�to�purchase�AT� (Assistive�Technology).� �Respondents� reported�that� their�AT� (provided�both�by�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�support�for�people�with�a�disability�and�contributes�to�their�life�outcomes.�

Problem�areas�with�the�VAEP��

Of�the�100�survey�respondents,�91%�are�theoretically�eligible�for�the�VAEP�program,�yet�30%�self�funded�their�AT.�Further,�73%�of�the� items� identified�as�required,� (but�remaining�unprovided),�by�participants�

Page 21: InquiryintoSocialInclusionforVictorianswithaDisability … · 2014-09-15 · DeakinUniversityAProfErinWilson Page1of43 InquiryintoSocialInclusionforVictorianswithaDisability Submittedby:

Deakin�University���AProf�Erin�Wilson� � Page�21�of�43�

are�eligible�for�VAEP�funding,�ie.�the�items�are�on�the�VAEP�Aids�and�Equipment�List.�This�suggests�that�people� with� disabilities� are� not� using� the� VAEP� to� the� full� extent� of� their� eligibility.� Qualitative� data�provides�a�range�of�reasons�for�this.�Some�participants�described�opting�out�of�the�VAEP�system�on�the�grounds�that�procedural�hurdles,�waiting�times�and�uncertain�outcomes�render�it�an�ineffective�option,�despite�then�experiencing�substantial�hardship�and�compromised�participation.�

Compared� to� current�market� costs,� VAEP� subsidy� rates� on� average� cover� 66%�or� less� of�AT� purchase�costs.�VAEP�subsidy�gaps�include�shortfalls�of�27%�for�walking�frames;�42%�for�manual�wheelchairs;�31%�for�beds,�35%�for�portable�ramps;�17%�for�mobile�hoists;�49%�for�pressure�care�equipment;�and�up�to�78%�for�home�modifications.�Respondents�report�significant�financial�stress�resulting�from�this� level�of�co�contribution�(ie�self�funding�the�‘gap’),�given�their�low�income�status.�

Respondents�identified�that�they�used�and�required�a�wide�range�of�equipment,�around�a�third�of�which�is�not�currently�eligible�for�VAEP�funding.�Overall,�respondents�reported�currently�using�386�devices�that�are�not�eligible�for�VAEP�subsidies,�32%�being�communication�aids�and�9%�being�mobility�items.��

In� terms� of� the�VAEP,� respondents� reported�high� levels� of� co�payment� and� financial� stress,� long�wait�times� for� equipment,� lack� of� maintenance� and� repair� of� funded� AT,� and� funding� guidelines� that�prohibited�updating�AT�requirements�based�on�changing�needs.��

The�lack�of�provision�of�AT�resulted�in�respondents�reporting�114�incidents�of�failure�to�achieve�results�in�the�sixteen�‘life�areas’�of�the�Quality�Framework�(Department�of�Human�Services�2007).�Of�these,�most�were� related� to� the� area�of� ‘moving� around’,� followed�by� ‘having� fun’,� ‘paying� for� things’,� ‘exercising�rights�and�responsibilities’�and�‘expressing�culture’.�This�suggests�that�the�lack�of�provision�of�AT�(related�to� inadequate�funding)�results� in�failure�to�attain� life�outcomes�matched�to�the�Victorian�Government�policy�goals.�

Other�funding�support�for�AT�

The�Victorian�Aids�and�Equipment�Program�is�the�primary�focus�of�this�report.�However,�evidence�from�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�government�and�other).��The�need�to�navigate�these�multiple�sources�in�order�to�gain�sufficient�funding�to�purchase�needed�AT�causes�both�significant�stress�for�respondents,�as�well�as�resulting�in�the�failure�of� equipment� provision� where� the� process� is� too� burdensome� or� other� factors� produce� this� failure.�There�is�a�need�to�co�ordinate�or�streamline�these�multiple�funding�programs�and�to�ensure�individuals�are�supported�to�access�their�full�entitlements.�

The� Equipment� Study� found� substantial� limitations� in� AT� provision,� which� act� as� a� barrier� to� the�achievement�of�participation�as�detailed�in�international,�national�and�state�disability�policies.�Some�138�instances�of�failure�to�achieve�rights�as�explicated�in�the�articles�of�UN�CRPD�were�identified.�Similarly,�114� incidents�were�classified�as�policy� failures� in� relation� to� the�Victorian�State�Disability�Plan�and� its�Quality�Framework.��

Page 22: InquiryintoSocialInclusionforVictorianswithaDisability … · 2014-09-15 · DeakinUniversityAProfErinWilson Page1of43 InquiryintoSocialInclusionforVictorianswithaDisability Submittedby:

Deakin�University���AProf�Erin�Wilson� � Page�22�of�43�

In�short,�governments�have�obligations� to�overcome�barriers�to�the�equal�citizenship�of�people�with�a�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�Rights�of�Persons�with�Disabilities.�

Is�the�AT�funding�system�effective?�

Combining� the� evidence� from� The� Equipping� Inclusion� Studies� suggests� that� the� effectiveness� of� the�current�system�of�AT�funding�provision�is�burdened�with�the�following�issues:�

1.�The�VAEP,�and�most�other�sources�of�AT� funding�across� jurisdictions,� is�a� subsidy�program.�Subsidy�programs� require� a� level� of� co�payment� from� recipients.� Compared� to� current�market� costs,� subsidy�rates�on�average�cover�less�than�66%�of�device�costs.��In�most�subsidy�programs,�the�level�of�subsidy�is�set�relative�to�the�affordability�and�feasibility�of�the�level�of�co�payment�in�relation�to�the�characteristics�of�the�recipient�group�(level�of�need,�ability�to�pay�etc).�In�many�instances,�subsidy�programs�include�a�‘safety�net’�provision� for� those�who� cannot�meet� the� level�of� co�payment,� or� for�whom� frequency�of�need�and�use�of�the�program�makes�the�cumulative�co�payment�level�too�onerous�or�unreachable.�

In�this�instance,�the�population�requiring�AT�provision�is�the�population�of�people�with�a�disability.�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�proportion�of�participation�poverty�amongst�this�group.�The�capacity�of�this�group�to�make�co�payments�for� AT� is� severely� limited.� Their� need� for� AT� is� substantial,�with�most� requiring� up� to� 13�devices� and�other�modifications�as�part�of�their�AT�solution.�This�suggests�co�payments�would�be�repeated.�Thus�the�VAEP,�and�other�programs,�are�operating�in�a�way�incompatible�with�their�target�recipient�group�to�the�extent�that�the�group�cannot�afford�to�participate�in�the�program.�

2.�The�VAEP�operates�within�strict�eligibility�criteria�in�relation�to�the�items�of�AT�deemed�to�be�eligible�(ie�a�list�of�approved�items�along�with�policy�excluding,�or�severely�restricting,�repeat�provision�even�if�needs�change).�The�Equipping�Inclusion�Studies�found�that�respondents�each�utilised�a�‘suite’�of�AT�that�was�inter�related�and�co�dependent�in�terms�of�effectiveness.�That�is,�items�functioned�as�a�package�and�were� required� to� be� used� together.� The� elements� of� an� AT� solution� comprised� equipment� devices,�environmental�modifications�and�personal�care.�Compounding�this� issue� is� the� focus�of�the�VAEP,�and�other� programs,� upon� the� device� or� piece� of� equipment,� with� limited� attention� to� environmental�modifications�or�personal�care.�There�is�currently�no�focus�on�the�overall�context�of�AT�in�the�person’s�life�across�these�three�dimensions�of�an�AT�solution.�The�effectiveness�of�AT�is�dependent�on�the�suite�of�AT�being�provided�together�though�no�attention�is�paid�to�this.��

Further,�there�was�a�high�demand�for�AT�that�was�not�currently�eligible�for�VAEP�funding.�This�included�‘generic’�items�such�as�mobile�phones�and�computer�applications.�In�all�instances,�the�generic�item�was�an�essential�part�of�a�highly�customised�AT�solution�that�produced�desired�life�outcomes.�Currently�only�those� items� deemed� eligible� are� subsidised.� This� problem� is� underlined� by� the� narrow� scope� of� AT�

Page 23: InquiryintoSocialInclusionforVictorianswithaDisability … · 2014-09-15 · DeakinUniversityAProfErinWilson Page1of43 InquiryintoSocialInclusionforVictorianswithaDisability Submittedby:

Deakin�University���AProf�Erin�Wilson� � Page�23�of�43�

included�in�the�VAEP.�The�2010�Aids�and�Equipment�List�of�VAEP�was�found�to�hold�eligible�only�13%�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�device�types�that�support�mobility,�communication,�and�other�categories�within�the�VAEP�funding�scope,�as�well� as� other�needed� items.� This�program� response� is� unlikely� to� achieve�effective�outcomes� from�such�ad�hoc�and�piecemeal�investment.�

3.� Limited� or� partial� eligibility� for� funding� schemes� and� the� high� burden� of� co�payment� propels�applicants�into�a�search�for�‘fit’�into�multiple�other�funding�programs.�In�this�environment,�the�onus�is�on�disadvantaged�individuals�(case�by�case)�to�seek�out�other�funding�sources�for�AT��(including�those�also�managed�by�the�Department�in�charge�of�the�VAEP).�There�are�significant�negative�impacts�of�this�both�for�the�individual�and�for�the�service�system.�As�a�result�of�this�complex�system,�paid�disability,�welfare�and� medical� staff� are� spending� significant� time� away� from� other� core� service� delivery� to� seek� out�funding�sources�for�clients�(Pate�&�Horn�2006).�Respondents�in�Study�1�also�report�significant�difficulty�and�time�spent�undertaking�this�search�for�alternate�sources.��Time�delays�resulting�from�the�search�for�‘gap’�funds�means�that�there�are�lengthy�delays�of�AT�being�approved,�ordered,�delivered�and�installed�or�used.�These�delays�affect�the�appropriateness�of�AT�actually�delivered,�as�the�intervening�time�period�(in�some�cases�more�than�a�year:�Wilson,�Wong,�Goodridge�2006),�has�led�to�changes�in�individual�need,�as�well�as�increased�social�and�health�deterioration�(and�the�flow�on�effects�and�costs�of�these).�Further,�the�requirement�to�meet�multiple�(and�sometimes�conflicting)�requirements�of�various�funding�sources�from�different� jurisdictions,�can�place�unnecessary� limits�on�the�allowed�use�of�AT�across� life�domains�(eg.�funding�guidelines�prohibit�use�of�AT�in�different�venues�or�for�different�activities).�Finally,�multiple�sources�of�funding�result�in�a�lack�of�clear�responsibility�for�repairs�and�maintenance�with�the�individual�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�families�and�children.�The�central�question�is�whether�the�interventions�are�of�assistance�to�families�and�children.�Put� simply�–�are�early� childhood� interventions� leading� to�positive�outcomes� for� families�and�children?��

Page 24: InquiryintoSocialInclusionforVictorianswithaDisability … · 2014-09-15 · DeakinUniversityAProfErinWilson Page1of43 InquiryintoSocialInclusionforVictorianswithaDisability Submittedby:

Deakin�University���AProf�Erin�Wilson� � Page�24�of�43�

The�specific�research�questions,�along�with�a�set�of�sub�questions�or�topic�areas�are:�

1. What� are� the� outcomes� experienced� by� children� and� families� resulting� from� ECI� services� in� the�Southern�Region�of�Scope?�The�research�sought�to�identify�and�analyse:�� the�sorts�of�outcomes�aspired�to�by�families,�� the�level�of�achievement�and�types�of�outcomes�achieved�for�families�and�children,�� the�extent�to�which�service�providers�and�families�feel�that�needs�have�been�met,�� the�level�of�satisfaction�parents�have�with�services�received,�and�� the�enablers�and�barriers�to�outcomes.�

�2. What�is�the�extent�of�family�centred�practice�in�use�within�ECI�services�provided�by�Scope�Southern�

region?�

The�research�sought�to�identify�and�analyse:�� how�therapists�understand�‘family�centred�practice’,�

� how�parents�rate�the�extent�of�family�centred�practice,�� the�level�of�parent�involvement�in�Family�Service�and�Support�Plan�development,�� the�extent�of�therapists’�familiarity�with�Family�Service�and�Support�plans.�

�3. What�are�the�elements�and�practices�of�supporting�transdisciplinary�practice�in�the�region?�

�The�research�sought�to�identify�and�analyse:�

� the�degree�and�type�of�transdisciplinary�work�undertaken�by�the�therapist,�� the�resourcing�and�support�of�transdisciplinary�work,�� the�confidence,�experiences�and�preferences�of�therapists�working�in�transdisciplinary�practice.�

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�relationships�between�children,�families�and�community.�General�themes�emphasize�the�importance�of�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�based�on�the�recognition�of�human�rights.�

Researchers� collected� data� on� a� range� of� key� domains� at� a� number� of� time� intervals� commencing� in�November�2006�through�to�December�2009.�Overall,�eight�main�methods�of�data�collection�were�used�including;��

� a�yearly�parent�survey�(with�68�parent�respondents�between�2006�and�2008),��� analysis�of�Family�Service�and�Support�Plans�(FSSPs)�(26�plans�in�total),��

Page 25: InquiryintoSocialInclusionforVictorianswithaDisability … · 2014-09-15 · DeakinUniversityAProfErinWilson Page1of43 InquiryintoSocialInclusionforVictorianswithaDisability Submittedby:

Deakin�University���AProf�Erin�Wilson� � Page�25�of�43�

� an�Outcome�and�Process�document�attached�to�the�Family�Service�and�Support�Plan�(3�in�total),��� a�yearly�therapist�survey�(with�24�therapist�responses�between�2006�and�2008�in�total),��� a�record�of�manual�usage�(26�responses�in�2007�and�2008�in�total),��� individual�therapist�interviews�(6)�and�focus�groups�(3)�in�2007�and�2008,�and��� parent�interviews�(7�participants�in�total�between�2007�and�2008).�

Key�findings:�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�relatedness�of�child�and�family�outcomes�in�that�positive�outcomes�for�one�will�have�positive�outcomes�for� the� other.� The� literature� also� offers� little� consistency� in� terms� of� identifying� outcome� areas� or�methods�of�measurement.�

Outcomes�for�children�were�assessed�in�terms�of�the�type�of�goals� identified�(or�outcomes�aspired�to)�within�Family�Service�and�Support�Plans�and�the�level�of�achievement�of�these.�Outcomes�or�goals�were�classified�in�relation�to�the�categories�of�function/activity,�participation�and�environment�(as�defined�by�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)�Outcome�Statements�(Moore�and�Sargood,�2005)�that�propose�outcomes�of�service�delivery�for�children� and� families� (as� well� as� communities)� in� the� areas� of� functioning� (understood� as� both�knowledge�and�skills),�and�participation�(which�includes�involvement�with�others,�attitudes,�support�and�coping).��

In�terms�of�findings,�a�clear�majority�of�outcome�goals�for�children�(an�average�of�78%�across�2007�and�2008)� related�to� function/activity� (e.g.� ‘to�sit� independently�and�safely’).�The�remainder�of�goals�were�focused�on�achievements�relating�to�participation�and�environment.�This�emphasis�on�function�was�also�reflected� in� the�analysis�using�relating�to� life�areas�(Wilson,�2006),�which�evidenced�the�prevalence�of�goals�relating�to�personal�life�(and�average�of�72%).�The�focus�on�function�may�suggest�the�application�of�a�medical�model�of� intervention�rather�than�a�social�model.�This� is�not�surprising�given�the�age�of�the�children� (0�4� years),� as�parents� are� likely� to�be� concerned�about�maximising� the�motor� and� cognitive�skills�of�their�child� in�the�early�stages�of�human�development.�While�not�explicit,�arguably,�there� is�an�implied� element� of� participation� in� that� the� development� of�motor� and� cognitive� skills�may� assist� in�greater�life�participation.��

In�term�of�levels�of�achievement�of�outcomes�for�children,�across�2007�and�2008�just�over�50%�of�goals�were� judged� by� therapists� and� parents� as� either� ‘achieved’� or� ‘ongoing� �� progressing� well’.�Approximately�a�third�were�‘ongoing���continuing’.�However,�the�level�of�success�in�achieving�goals�is�not�easily�interpreted�from�this�data.�This�quantitative�analysis�of�achievement�would�suggest�a�mixture�of�significant� success� and� an� uncertain� level� of� achievement� given� the� ongoing� need� to�work� at� certain�goals.�Given�most�of�the�goals�were�related�to�cognitive�or�motor�development,�this�suggests�many�of�these�goals�will�require�a�long�term�focus�and�continuous�intervention�as�progress�is�made.�By�contrast,�some�goals�are�framed�as�short�term�and�therefore�are�more�likely�to�be�achieved.�Also,�no�information�

Page 26: InquiryintoSocialInclusionforVictorianswithaDisability … · 2014-09-15 · DeakinUniversityAProfErinWilson Page1of43 InquiryintoSocialInclusionforVictorianswithaDisability Submittedby:

Deakin�University���AProf�Erin�Wilson� � Page�26�of�43�

is�available�with�regard�to�the�degree�of�disability�and�the�anticipated�timeframe�for�success.�Such�issues�suggest�that�caution�must�be�exercised�in�determining�the�success�or�not�of�a�service�based�on�statistical�criteria.�The�use�of�interview�data�evidences�the�overwhelmingly�positive�view�of�parents�and�therapists�in�regard�to�outcomes�achievement�for�children.��

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,�willingness�to�recommend�the�service�to�others,�and�an�assessment�of�the�extent�to�which�their�needs�were�met�by�the�service.�As�with�the�results�for�children,�outcomes�for�families�were�positive�in�relation�to�the�measuring�of�nine� life�domains�and�the�twelve� items�relating�to�parenting�capacity.�On�average�across�2007�and�2008,�approximately� two�thirds�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�overwhelming�majority�regarding�the�service�as�having�a�very�positive�or�positive� impact�on�parenting�capacity.�

Similarly,�an�average�of�82%�of�parents�in�2007�and�2008�rated�the�service�as�meeting�most�or�all�their�needs,�and�an�average�of�96%�of�parents�in�both�years�were�‘mostly’�or�‘very’�satisfied�with�the�service.�Consistent�with�this,�an�average�89%�of�parents�would�‘definitely’�or�‘probably’�recommend�the�service�to�others.�Despite�these�positive�results,�the�study�reports�concerns�in�the�literature�in�regard�to�the�use�of�satisfaction�measures�as�proxy�indicators�for�outcomes�achievement.�

It�can� therefore�be�concluded� that,�generally,� the�service�has�provided�positive�outcomes� for�children�and� families.� Despite� this,� parents� also� identified� areas� for� improvement� in� service� delivery� by�identifying�both�enablers�and�barriers�to�positive�outcomes.�

In� interviews,� parent� surveys� and� in� reviews� of� Family� Service� and� Support� Plans� in� 2007� and� 2008,�therapists�and�parents�were�asked�to�identify�the�enablers�and�barriers�to�outcomes.�The�enablers�and�barriers� to� positive� outcomes� identified� by� families� are� broadly� consistent� with� those� identified� by�therapists.�The�major�enabler�to�achieving�positive�outcomes�appears� to�be�adequate� resources� �� this�includes�the�provision�of�competent�and�committed�therapists�to�work�empathetically�with�children�and�families�with�ongoing,�regular�therapeutic�intervention�and�family�support.�Families�also�highlighted�the�need� for� access� to� equipment� to� support� the� child,� and� the� provision� of� guidance,� instruction� and�associated�activities.�All�of�this�requires�time,�which�families�recognised�as�a�barrier�to�outcomes,�as�they�attempted�to�juggle�the�various�demands�in�their�lives,�while�therapists�were�also�restricted�by�time�due�to� the� various� demands� of� their� work� loads.� As� a� result,� other� barriers� identified� were� insufficient�therapy�provision�and�lack�of�money�and�resources.�

It�should�be�emphasised�that�overwhelmingly�families�praised�the�skill,�empathy�and�dedication�of�the�therapists.�Many�of�them�expressed�the�way�in�which�they�felt�therapists�had�gone�out�of�their�way�to�

Page 27: InquiryintoSocialInclusionforVictorianswithaDisability … · 2014-09-15 · DeakinUniversityAProfErinWilson Page1of43 InquiryintoSocialInclusionforVictorianswithaDisability Submittedby:

Deakin�University���AProf�Erin�Wilson� � Page�27�of�43�

support�families�and�had�demonstrated�their�commitment�to�working�and�collaborating�alongside�family�members.� Where� families� had� concerns,� they� felt� that� service� budgetary� limitations� hampered� the�extent�of�the�work�that�could�be�done�and�that�this�was�not�a�fault�of�the�service�or�individual�therapists�but�was�systematic�throughout�the�public�sector.�Funding�issues�impact�all�of�the�enablers�and�barriers�mentioned�above.�More�adequate�funding�targeting�these�key�areas�could�work�towards�more�enabling�practices�and�better�outcomes.�

Wilson,�E.�&�Campain,�R.�(submitted���under�review)�Reflections�on�measuring�outcomes�of�individualised�plans�for�people�with�disability.�

Excerpts:�

This� paper� offers� a� discussion� of� a� project� to�measure� the� outcomes� of� individualised� planning� for� a�small�group�of�adults�with�intellectual�disabilities�in�Victoria.�The�paper�provides�reflective�commentary�on�an�outcome�measurement�process�that�involved�the�use�of�individual�plans�and�the�development�of�an�Individualised�Planning/Review�tool�to�assess�goals�and�outcomes.�Analysis�is�provided�for�the�range�of�goals�and�outcomes�aspired�to,�the�levels�of�repeated�or�ongoing�goals,�and�the�measurement�of�their�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�effectiveness�of�supports�provided.�

Results�and�Discussion��

i) Level�of�goal�achievement��

Overall,�results�in�all�sections�of�individuals’�plans�were�positive,�with�a�high�degree�of�achievement�(an�average�of� 70.7%�of� items� of� importance� achieved�within�each�plan),� and� adequacy� of� frequency� (an�average�65.1%�rated�as�adequate�within�each�plan).�This�is�similar�to�the�findings�of�Wigham�et�al�(2008),�who�found�a�high�degree�of�goals�met,�including�80%�of�leisure�related�goals�met,�66%�of�social�network�goals�met,�and�73%�of�independence�and�skills�goals�met.���

Analysis�of�the�negative�responses�(i.e.�‘no’�in�regard�to�does�it�happen�or�adequate�frequency)�identifies�that,�in�the�main,�negative�responses�were�related�to�elements�that�represented�complex�change�actions�(43%�of�negative�responses)�involving�long�term�change�(e.g.�finding�own�place�to�live),�lifestyle�change�(e.g.�changing�eating�and�exercise�habits),�or�involving�activity�across�multiple�services�and�supports�(e.g.�organising�and�funding�health�professionals).�

ii) Breadth�of�goals/outcomes�aspired�to��

As�well�as�the�extent�of�goal�attainment,�we�were�interested�to�explore�questions�about�the�breadth�of�the�plan�coverage.�Were�services�limiting�the�goals�included�in�plans,�or�were�they�reflecting�the�‘whole�of�life’�interests,�needs�and�aspirations�of�the�individual?�To�this�end,�we�decided�to�analyse�the�elements�of�the�plan�deductively,�using�two�life�domain�and�outcome�frameworks,�anticipating�that�a�person�centred�plan�would�likely�reflect�elements�across�a�wide�range�of�life�areas.�The�DHS�Quality�

Page 28: InquiryintoSocialInclusionforVictorianswithaDisability … · 2014-09-15 · DeakinUniversityAProfErinWilson Page1of43 InquiryintoSocialInclusionforVictorianswithaDisability Submittedby:

Deakin�University���AProf�Erin�Wilson� � Page�28�of�43�

Framework�(Department�of�Human�Services,�2007)�and�the�Outcomes�Framework�(Wilson,�2006)�were�selected�for�this�project.�The�Outcomes�Framework�developed�by�Wilson�(2006;�Wilson�&�Campain,�2011)�attempts�to�capture�life�experience�and�aspiration�by�identifying�nine�areas�of�life:�personal,�social,�political,�economic,�educational,�recreation�and�leisure,�cultural,�spiritual,�and�environmental.��

Analysis�against�the�first�outcomes�framework�(Wilson,�2006;�Wilson�&�Campain,�2011),�shows�a�breadth�of�outcome�focus�within�plans�across�the�four�years�of�data�collection�(table�4).�However,�elements�were�strongly�clustered�into�three�main�areas:�personal�well�being�(average�of�28.6%�of�elements�clustered�here);�social�life�(21.8%);�recreational�and�leisure�life�(21.8%).�As�the�most�commonly�referenced�area,�personal�wellbeing�was�further�analysed�to�identify�the�main�themes�within�it.�The�major�theme�in�this�area�was�that�of�health�and�fitness�(26.5%�of�elements),�followed�by�the�development�of�lifeskills�such�as�cooking,�using�money,�literacy,�and�phone�skills�(18.1%).�Other�themes�included�support�with�transport,�acquiring�accommodation,�learning�to�drive,�developing�psycho�social�skills�(assertiveness,�anger�management),�mental�and�emotional�health,�and�exercising�independence�and�choice.�A�smaller�proportion�of�goals�were�clustered�in�the�areas�of�educational�life�(10.9%)�and�economic�life�(9.4%).�The�life�domains�relating�to�political�life�and�spiritual�life�received�little�attention�in�any�of�the�four�years�of�plans�available�for�the�nine�participants�

A�similar�clustering�was�evident�using�the�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);�‘Building�relationships’�(16.5%);�‘Looking�after�self’�(11.1%);�‘Being�part�of�community’�(9.7%);�and�‘Always� learning’� (9.6%).� Again,� a� wide� spread� of� actions� and� elements� was� apparent.� However,� few�elements�were�clustered�in�the�areas�of�‘Exercising�rights/responsibilities’�and�‘Choosing�supports’.�

This�analysis�offers�some�guidance�around�the�areas�of�life�which�services�must�provide�supports�within,�which�speaks�to�the�range�of�professional�skills�and�knowledge�required�of�staff�working�in�this�service�context.� Though� there� is� a� need� to� be� cautious� in� our� conclusions� given� that� this� research� focused�specifically�on�a�community�group�of�young�adults�with� intellectual�disability,�the�data�above�suggests�that� services�and� their� staff� can�anticipate�a�substantial� focus� in� the�areas�of� supporting� relationships�and�social�activities,�as�well�as�personal�life�needs�such�as�those�relating�to�supporting�health�and�fitness�goals,�the�further�development�of�a�wide�range�of�life�skills�(cooking,�banking,�independent�travel),�and�developing�psycho�social�skills�such�as�coping�with�anger,�being�assertive�etc.��

i) Levels�of�repeated�or�ongoing�goals��

Six� (6)�participants�provided�plans�and�or� review�documents� in�more�than�a�single�year,� thus�allowing�comparison� of� goals� listed� from� year� to� year.� A� high� proportion� of� goals/actions� listed� in� plans�were�repetitive�of�previously�identified�goals/actions.�An�average�of�81%�of�subsequent�year�goals,�across�the�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�difficult�to�achieve�with�a�longer�time�frame�required�(e.g.�‘find�suitable�housing’�or�‘holiday�to�QLD’).�In�other� cases,� goal� framing� had� ongoing� relevance� in� a� person’s� life� (e.g.� ‘continued� involvement�with�

Page 29: InquiryintoSocialInclusionforVictorianswithaDisability … · 2014-09-15 · DeakinUniversityAProfErinWilson Page1of43 InquiryintoSocialInclusionforVictorianswithaDisability Submittedby:

Deakin�University���AProf�Erin�Wilson� � Page�29�of�43�

hockey�club’�or� ‘healthy�food�/�cooking’).� In�a�smaller�number�of� instances,�goals�were�repeated�even�though�they�appeared�practical,�short�term�and�more�easily�completed�(e.g.�‘learn�self�defense’).��

This�analysis�leads�to�a�critical�engagement�with�notions�of�‘achievement’�and�‘completion’.�It�suggests�that� evaluating� outcomes� based� on� goal� completion�has� its� limitations� in� relation� to� individual� plans.�Plans�are� likely� to�continue�to� identify�and�re�affirm� themes�of� importance� in�people’s� lives� that�have�long�term�stability.�This�would�seem�appropriate�unless�we�are�to�shift�the�focus�of�attainment�to�the�level�of� tasks� (e.g.�purchase�new�hockey�uniform)�related�to�goals,�which� focuses�attention�on�service�outputs�not�outcomes�of�these,�though�these�are�easier�to�apply�completion�measures�to.�

d)�identify�examples�of�good�practice�on�inclusion�and�participation�driven�by�local�government�and�the�community�sector.�

Related�points:��

6.3�Are�there�examples�of�good�practice�in�advancing�social�inclusion�and�participation�driven�by�local�government�and�the�community�sector?�

Jenkin,�E.�&�Wilson,�E.�(2009).�Inclusion:�making�it�happen.��Key�elements�for�disability�organisations�to�facilitate�inclusion.�Melbourne:�Scope�(Vic).�

Summary:�

Thirteen� (13)� case� studies� of� successful� inclusion� practice� are� presented� from� interview� data.� Case�studies�are�organised�according�to�the�Orientations�to�inclusion�work�discussed�above�in�relation�to�TOR�a).� The�majority� of� interviewees�provided� case� studies� relating� to�Orientation�One� (Individual� person�centred�work�leads�to�inclusion:�Inclusion�work�and�community�building�happen�in�direct�response�to�the�expressed� interests,�needs,�and�aspirations�of�specific�people�with�a�disability).�There� is�a�significantly�lesser� emphasis� on� supporting� the� community�with� social� change� and� inclusive�practice� (Orientations�two�and�three).��This�is�a�point�for�further�reflection�and�discussion.�

� �

Page 30: InquiryintoSocialInclusionforVictorianswithaDisability … · 2014-09-15 · DeakinUniversityAProfErinWilson Page1of43 InquiryintoSocialInclusionforVictorianswithaDisability Submittedby:

Deakin�University���AProf�Erin�Wilson� � Page�30�of�43�

e)�assess�how�the�Disability�Act�2006�has�impacted�on�the�social�inclusion�of�people�with�a�disability�with�respect�to�Victorian�government�services.�

Related�points:��

5.1�To�what�extent�have�the�inclusion�and�participation�of�Victorians�with�a�disability�been�advanced�following�the�introduction�of�the�Disability�Act�2006�(Vic)?�

5.2�What�impact�has�the�Disability�Act�2006�(Vic)�had�on�the�social�inclusion�of�people�with�a�disability�with�respect�to�Victorian�government�services?�

Phillips,�L.,�Wilson,�L.�&�Wilson,�E.�(2010).�Assessing�behaviour�support�plans�for�people�with�intellectual�disability�before�and�after�the�Victorian�Disability�Act�2006,�Journal�of�Intellectual�and�Developmental�Disability,�35(1),�1�5.��

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�disability�and�challenging�behaviour�when�restrictive�interventions�are�warranted.��This�study�sought�to�elucidate� the� extent� to� which� behaviour� support� plans� are� inclusive� of� best� practice� criteria,� with� a�comparison�made�prior�to�and�following�proclamation�of�the�Act.�

This�study�found�that�for�some�best�practice�criteria,�there�was�a�significant�increase�in�their�inclusion�in�behaviour� support� plans� following� proclamation� of� the� Act.� � In� contrast,� other� criteria� contained�ambiguous�or�partial�descriptions�only,�and�they�remained�inadequately�included.��The�findings�suggest�variability�in�the�degree�to�which�specific�best�practice�criteria�before�and�after�the�Act’s�proclamation�are�contained�within�behaviour�support�plans.��On�average,�post�Act�plans�contained�only�52�per�cent�of�best�practice�criteria.�

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�training�initiative�focused�on�behaviour�support�and�intervention.�The�results�of�this�study�indicate�that�disability� support� staff� are� ill� equipped� to� undertake� the� complex� assessments,� planning� and�implementation�associated�with�behaviour�support�strategies,�despite�the� legislative�framework�which�guides�and�directs�this�intervention.�

f)�recommend�ways�to�increase�social�inclusion�including�the�roles�of�and�collaboration�between�local,�state�and�federal�governments,�the�community�sector,�individuals�with�a�disability�and�their�carers?�

Related�points:��

3.1�What�needs�to�happen�to�ensure�that�people's�individual�disability�and�experience�are�accounted�for�in�efforts�to�increase�their�social�inclusion?�

Page 31: InquiryintoSocialInclusionforVictorianswithaDisability … · 2014-09-15 · DeakinUniversityAProfErinWilson Page1of43 InquiryintoSocialInclusionforVictorianswithaDisability Submittedby:

Deakin�University���AProf�Erin�Wilson� � Page�31�of�43�

4.3�What�do�you�see�as�the�emerging�issues�for�Victorians�with�a�disability�over�the�next�20�years�and�how�might�these�influence�their�social�inclusion?�

8.1�What�needs�to�happen�to�improve�the�social�inclusion�of�Victorians�with�a�disability�into�the�future?�

Jenkin,�E.�&�Wilson,�E.�(2009).�Inclusion:�making�it�happen.��Key�elements�for�disability�organisations�to�facilitate�inclusion.�Melbourne:�Scope�(Vic).�

Excerpts:�

Findings�identified�the�enablers�and�barriers�to�inclusion,�which�can�act�as�a�guide�to�increase�inclusion.�All�interviewees�were�asked�to�identify�the�factors�that�affected�the�outcomes�of�their�inclusion�practice�example�or�inclusion�work�generally.��In�each�section,�factors�are�identified�in�relation�to�the�individual�(i.e.� the� person� with� a� disability);� the� staff� and� organisation;� and� the� community.� � � Finally,� data� is�presented�that� reflects� interviewees’� identification�of�key� factors� to� influence� the� success�of� inclusion�work.�

Enablers�for�inclusion�work�identified�at�the�level�of�each�stakeholder�group�

Individual�and�family� Staff�and�Organisation� Community�

� Trust�

� Expressed�choice,�interest�

� Determination�&�commitment�

� Resources�

� Role�&�relationship�with�family,�agency�&�inclusion�worker�

� Flexibility�

� Reconceptualising�organisation’s�role�

� Relationships�

� Organisational�support�&�skill�sharing�

� People�with�a�disability�in�control�

� Staff�

� Resources�

� Promoting�good�practice�

� Time�and�patience�

� Joint�focus�

� Attitude,�commitment� and�personalities�

� Disability�specific�communities�

� Flexibility�

� Legislation�and�public�awareness�

� Partnership�

� Leadership�

Challenges�for�or�barriers�to�inclusion�work�identified�at�the�level�of�each�stakeholder�group�

Individual�and�family� Staff�and�Organisation� Community�

� Fear�and�lack�of�confidence�

� Communication�

� Staff�

� Resources�and�time�

� Attitude�and�lack�of�awareness�

Page 32: InquiryintoSocialInclusionforVictorianswithaDisability … · 2014-09-15 · DeakinUniversityAProfErinWilson Page1of43 InquiryintoSocialInclusionforVictorianswithaDisability Submittedby:

Deakin�University���AProf�Erin�Wilson� � Page�32�of�43�

� Age,�health�&�disability�

� Informal�and�formal�support�

� Access�and�infrastructure�

� Safety�

� Finances�

� Personality�

� Organising�the�work��

� System�and�organisational�issues��

� Resources�

Current�issues�with�practice�

� Inclusion�as�community�tourism,�with�a�focus�on�being�'present'�rather�than�participating�in�community�/�life�activities;�

� A�de�valuing�of�communities�of�peers�with�disabilities;�

� Inclusion�work�is�ad�hoc�and�not�systematically�supported�in�organisations;�

� Lack�of�focus�on�resources�and�targeted�work�to�overcome�barriers;�

� The�silo�effect�that�prevents�coordinated�work�across�different�disability�services�and�supports.�

What�needs�to�change�–�new�understandings�and�approaches�

� Inclusion�is�both�personal�and�social�change;�

� People�are�part�of�multiple�communities�–�all�are�important;�

� The�work�is�both�large�scale�and�skilled;�

� Inclusion�is�all�staff’s�responsibility�and�needs�to�be�organisationally�embedded;�

� Inclusion�work�requires�flexibility;�

� Inclusion�relies�on�collaboration,�partnerships�and�co�ordination;�

� Strategic�planning�is�needed�to�manage�the�breadth�of�inclusion�work.�

Implications:�

A�systemic,�consistent�approach�to�inclusion�work�is�urgently�required.�Inclusion�work�must�be�explicitly�planned,�resourced�and�staffed.�

For�government�departments�

Page 33: InquiryintoSocialInclusionforVictorianswithaDisability … · 2014-09-15 · DeakinUniversityAProfErinWilson Page1of43 InquiryintoSocialInclusionforVictorianswithaDisability Submittedby:

Deakin�University���AProf�Erin�Wilson� � Page�33�of�43�

� Identify� the� current� resources,� areas� of� practice,� and� gaps� in� both� by� mapping� current�investment�committed�to�each�of�the�three�Orientations�of�inclusion�work;�

� Inclusion�requires�identified�investment�that�is�long�term�and�based�on�identified�areas�of�need;�

� Clarify�the�practice�of�inclusion�work;�

� Actively�develop�cross�sector�collaboration�in�inclusion�work.�

For�organisations�

� Inclusion� work� is� core� business� for� disability� agencies� and� must� be� explicitly� present� in�organisational�mission,�strategies,�staffing�and�resourcing;�

� Resource�all�staff�to�undertake�inclusion�work;�

� Develop�organisational�systems�and�processes�that�are�designed�to�be�responsive�to�individual�contexts;�

� Explicitly�require�and�resource�the�connection�of�person�centred�planning�and�inclusion�work;�

� Identify�explicit�leadership�and�collaborative�roles�for�people�with�disabilities�and�their�families.�

For�Practitioners�

� Reflection�on�practice�is�critical�to�successful�inclusion�work;�

� Be� continually� aware� of� power� differences� when�working� with� people� with� a� disability,� their�families�and�communities;�

� Identify�and�address�structural�barriers�collaboratively;�

� Allow�sufficient�time�to�facilitate�inclusion�work;�

� Adjust�your�strategies�and�approaches�based�on�changing�contexts.�

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:�

In�order�for�disability�awareness�and�attitude�change�programs�to�refine�and�implement�key�elements�identified�in�this�study,�they�will�require�sufficient�resourcing�which�is�unlikely�to�be�immediately�available�to�them.�The�elements�identified�above�require�a�level�of�customisation�of�programs�to�specific�audiences�and�contexts,�as�well�as�extended�delivery,�and�the�high�level�involvement�of�people�with�a�

Page 34: InquiryintoSocialInclusionforVictorianswithaDisability … · 2014-09-15 · DeakinUniversityAProfErinWilson Page1of43 InquiryintoSocialInclusionforVictorianswithaDisability Submittedby:

Deakin�University���AProf�Erin�Wilson� � Page�34�of�43�

disability.�Such�ingredients�require�the�active�support�of�government�and�non�government�funding�programs.�

The�research�summarised�in�this�report�also�suggests�that�there�is�a�need�to�expand�beyond�the�traditional�focus�of�disability�awareness�programs.�Attitude�and�behaviour�change�is�influenced�by�aspects�of�the�context�and�of�the�broader�attitudes�endorsed�within�this�context.�This�requires�targeted�work�within�the�specific�contexts�in�which�disability�awareness�programs�are�delivered,�ie.�schools,�universities,�workplaces,�local�government�and�community�groups.��This�work�would�involve:�

� Work�to�develop�the�policy�and�regulatory�environment�of�these�contexts�to�ensure�these�support�the� desired� attitudes� focused� on� by� awareness� programs.� Ensuring� that� policies� and� structural�practices�‘line�up’�or�are�consistent�with�desired�attitudes�and�behaviours�is�likely�to�increase�these�positive�behaviours;�

� Work�to�address�the�barriers�to�action�within�specific�contexts,�identified�by�participants,�to�enable�participants� to� enact� behaviours� (that� is,� have� the� skills,� opportunities� and� resources)� and� be�rewarded�(rather�than�disadvantaged)�with�positive�benefits�when�they�do�act�in�this�way.��

This�kind�of�work�is�often�undertaken�by�community�development�or�inclusion�workers,�though�is�not�well�identified�by�organisations�as�a�task�of�attitude�and�social�change.�This�work�needs�to�be�understood�as�complementary�even�necessary�to�that�of�disability�awareness�programs�and�could�be�undertaken�as�an�expansion�of�these�programs�or�by�other�staff�or�organisations,�so�long�as�the�work�is�linked�and�co�ordinated.�

Layton,�N;�Colgan,�S;�Wilson,�E;��Moodie,�M�&�Carter,�R.�(2010).�The�Equipping�Inclusion�Studies:�Assistive�Technology�Use�and�Outcomes�in�Victoria.��Burwood:�School�of�Health�and�Social�Development�and�Deakin�Health�Economics,�Deakin�University.�

Excerpts:�

Ingredients�of�an�effective�AT�funding�system:�

A�focus�on�Assistive�Technology�solutions�

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,�and�episodes�of�care),�and�that�the�effectiveness�of�these�is�achieved�or�maximised�when�used�together.� In� this�context,�a�piece�by�piece�approach�to�the�assessment�and� funding�of�AT�makes�little�sense.��Government�funding�of�AT�would�be�more�effective�if�it�moved�to�a�focus�on�the�provision�of�an�‘AT�solution’�as:����

‘an�individually�tailored�combination�of�hard�(actual�devices)�and�soft�(assessment,�trial�and�other�human�factors)�assistive�technologies,�environmental�interventions�and�paid�and/or�unpaid�care’�(Assistive�Technology�Collaboration�n.d).�

Page 35: InquiryintoSocialInclusionforVictorianswithaDisability … · 2014-09-15 · DeakinUniversityAProfErinWilson Page1of43 InquiryintoSocialInclusionforVictorianswithaDisability Submittedby:

Deakin�University���AProf�Erin�Wilson� � Page�35�of�43�

Such� a� focus� allows� solutions� to� be� tailored� to� individual� needs,� aspirations� and� context,� and� the� co�dependency�of�each�element�of�AT�to�be�planned�for�and�provided.��

‘Fit�for�purpose’�and�‘fit�for�time’�

An�understanding�of�the�dynamic�and�evolving�nature�of�AT�solutions�for�those� living�with�disability� is�also�essential�to�attain�solutions�that�are�both�‘fit�for�purpose’�and�‘fit�for�time’.�Substantial�data�from�these�studies�spoke�to�the�incremental�nature�of�change�related�to�age,�to�adjustment,�to�impairment�or�disease�progression,�life�stage,�and�changing�roles�and�responsibilities�within�the�family�and�community.�Life� changes� require� responsive� AT� funding� which� offers� more� than� once�per�lifetime� home�modifications,�or�seven�yearly�AT�replacement.�

The�‘best�fit’�or�most�effective�solution�is�shown�to� include�a�diverse�range�of�customised�and�generic�devices�used�inter�dependently.�The�VAEP�funds�only�a�very�small�proportion�of�needed�items�based�on�an�extremely�narrow�listing�of�eligible�devices.�The�mix�of�mainstream�and�disability�specific�AT�devices�in�use,�and�the�virtually�complete� lack�of� funding� for�mainstream�devices�even�when� 'fit� for�purpose',�points� to�major� �potential� � cost�efficiencies�as�well�as� support� for�mass�market� industries� to�continue�investment�in�inclusive�design�solutions�with�wide�applications.�

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�above�criteria,�and/or�through�annual�individual�budget�allocations�(that�can�be�used�to�purchase�self�prioritised�suites�of�items).�

Efficient�systems�

The�government�budget�for�AT�needs�to�be�sufficient�to�achieve�government�policy�directed�outcomes.�The�means�of� improving� the�current� system�may� include�a�high� level�of� co�ordination�within�VAEP� to�gain� funds� from�appropriate�parts� of� the� overall� health,� aged� care� and�disability� systems.� Substantial�elements�of�AT�cost�have�been�shown�to�be�carried�by�funders�other�than�the�VAEP,�therefore�a�health�sector� perspective� is� required� to� realign� funding� across� and� beyond� current� funding� silos,� maximise�efficient�delivery�of�AT�solutions�and�minimise�downstream�costs.�

An�efficient�funding�program�would�ensure�a�co�ordinated�and�streamlined�response,�able�to�integrate�'pieces'�of�AT�solutions�and�their�funding.�This�kind�of�coordination�requires�a�single�point�of�entry�to�'case�co�ordinators',�who�are�able�to�access�pockets�of�funds�(for�example�work�based�and�education�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,�this�kind�of�coordination�requires�leadership�to�work�with�different�jurisdictions�to�achieve�funding�contributions�to�be�merged�for�the�purchase�of�AT�solutions�that�can�be�used�in�different� life�domains�(related�to�different�jurisdictional�boundaries)���for�example�the�approved�use�of�a�wheelchair�for�work�and�home.�

Page 36: InquiryintoSocialInclusionforVictorianswithaDisability … · 2014-09-15 · DeakinUniversityAProfErinWilson Page1of43 InquiryintoSocialInclusionforVictorianswithaDisability Submittedby:

Deakin�University���AProf�Erin�Wilson� � Page�36�of�43�

Affordability�

AT�is�the�corner�stone�to�efficient�use�of�government�spending�on�disability,�and�has�been�demonstrated�to� underpin� the� achievement� of� life� outcomes.� The� provision� of� AT� is� critical� if� government� policy� in�regard�to�the�inclusion�of�people�with�a�disability�is�to�be�achieved.��The�VAEP�is�established�as�a�subsidy�program�to�facilitate�this.��

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�than�the�actual�cost�of�the�items�subsidised.�This�significant�‘gap’� is�too�great� in�many�cases�to�enable�the�recipient�to�find�funds�to�purchase�the� item.� � In�addition,�recipients�usually�require�multiple� items�and�elements�to�produce�an�effective�solution.�This�multiplies�the�burden�of�cost�to�individuals.�Finally,�the� recipient� cohort� of� the� VAEP,� in� particular� people�with� disabilities,� experiences� extreme� financial�disadvantage�and�is� least�able�to�afford�a�co�payment�contribution�to�meet�the�‘gap’�between�subsidy�and�actual�cost�of�item�or�to�self�fund�multiple�items.�

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.�In�short,�demand�exceeds�the�program’s�capacity.�

Given�the�level�and�nature�of�multiple�disadvantage�experienced�by�many�people�with�a�disability,�this�population�can�be�considered�a�special�needs�or�‘equity’�group�requiring�additional�support�to�equalise�the� life� chances� of� this� group� in� relation� to� other� Australians.� � To� achieve� this,� governments� must�increase�their�guaranteed�share�in�the�cost�of�provision�of�AT�to�this�disadvantaged�group.�This�suggests�that�other�mechanisms�are�required�to�achieve�guaranteed�funding�where�eligibility�is�established.��

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� co�payments� for� identified� groups� (eg� by� source� of�main� income,� level� of�annual� income,� or� various� equity� characteristics� including� existing� participation� restrictions)� or� in�identified�situations�(eg�by�total�extent�of�co�payment�per�annum).�

Overall,� there� is�a�strong�case�for� increasing�the�budget�for�AT�subsidy�for�people�with�a�disability.�An�increase�in�budget�appears�necessary�to�the�achievement�of�a�wide�range�of�policy�goals�for�people�with�disabilities.�An�increased�budget�recognises�the�nature�and�extent�of�economic�and�social�disadvantage�of�this�group.�Expenditure�is�justified�in�order�to�reduce�the�equity�gap�across�a�range�of�outcome�areas.�

Conclusion��

The�Equipping�Inclusion�Studies�show�that�the�provision�of�assistive�technology�results�in�a�wide�range�of�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�experience�significant� levels�of�financial�and�social�disadvantage,� it� falls�to�governments�to�adequately�support�them�to�overcome�barriers�to�their�full�participation�in�and�contribution�to�society.�This�support�includes� the� provision� of� AT� solutions.� The� provision� of� AT� solutions� to� people� with� disabilities� is� of�

Page 37: InquiryintoSocialInclusionforVictorianswithaDisability … · 2014-09-15 · DeakinUniversityAProfErinWilson Page1of43 InquiryintoSocialInclusionforVictorianswithaDisability Submittedby:

Deakin�University���AProf�Erin�Wilson� � Page�37�of�43�

critical� importance� in� making� a� difference� to� the� lives� of� individuals,� as� well� as� to� the� record� of�achievement�of�Australian�governments�in�upholding�the�rights�of�persons�with�disabilities.�

Wilson,�E.�&�Campain,�R.�(unpublished),�Above�and�Beyond:�exploring�outcomes�and�practices�of�Scope�Southern�Early�Childhood�Intervention�Services�2006�2009,�Melbourne:�Scope�(Vic).�

Excerpts:�

Issues�affecting�outcomes�and�inclusion���the�story�behind�the�results�

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�therapists�who�identify�the�complexity�of�their�circumstances.�In�some�situations�families�present�with�complex�problems�in�their�lives�including�housing�and�income�support�needs,�physical�and�mental�health�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�contemplating�suicide.�In�this�context,�therapists�require�a�wider�skill�set�not�just�within�the�discipline�of�the� ECI� field� but� also� related� to� counselling,� social� work� and� other� fields,� as� well� as� substantial�knowledge�of�other�services�and�referral�networks.��

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�travel�across�a�large�region,�and�limited�hours�per�client.�The�workload�model�of�eighty�percent�billable�hours�has�significant�negative�consequences�including�forcing�therapists�to�restrict�necessary�elements�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�care�providers�and�early�childhood�education�services;�co�ordination�of�all�the�services�delivered�to�the�family;� involvement� in� professional� development;� and� time� spent� in� transdisciplinary� practice� related�issues.� �All� this� is�undertaken� in�the�knowledge�that�there� is�an� immediate�window�of�time�where�the�child�requires�intensive�support�to�achieve�maximum�developmental�benefit.�For�families�and�therapists,�there�is�often�an�experience�of�ongoing�struggle�to�stay�afloat�with�both�parties�feeling�that�resources�and� supports� are� inadequate� and� barely� enough� to� prevent� people� from� drowning.� As� one� therapist�stated;�‘You�always�feel�like�you’re�treading�water’�(Therapist�07).�

Considerations�for�service�delivery�

1. Meeting�the�complex�needs�of� families:�The�study�makes�clear� that�the�needs�of� families�are�complex�and�frequently�crisis�driven,�and�that�early�childhood�intervention�staff�needs�skills�and�knowledge� well� beyond� therapeutic� disciplines� to� address� these.� To� adequately� meet� these�needs,�services�require�specific�resources�to�support�early�childhood�intervention�staff�such�as�

Page 38: InquiryintoSocialInclusionforVictorianswithaDisability … · 2014-09-15 · DeakinUniversityAProfErinWilson Page1of43 InquiryintoSocialInclusionforVictorianswithaDisability Submittedby:

Deakin�University���AProf�Erin�Wilson� � Page�38�of�43�

identified�social�work,�counselling,�and/or�community�work�personnel�with�expertise�in�the�area�of�working�with�‘at�risk’�families.�While�it�could�be�argued�that�such�resources�are�or�should�be�located�elsewhere� in�the�broader�service�system,� this�study�shows�therapists�unable�to�access�these� resources� sufficiently,� and� the�barriers�of� time�and�knowledge� that� function� to�hamper�this�access.�Co�location�of�such�resources�within�ECI�services�would�overcome�these�barriers.�

2. Transdisciplinary�practice:�While�transdiscplinary�practice�is�a�stated�element�of�early�childhood�intervention�endorsed�by�the�Victorian�State�Government�(Early�Years�Service,�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,� identifying�what� is� realistic�and�appropriate,�given�the�resources�available� to�support�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,�in�this�service�at�least,�for�a�focus�on�collaborative�practice�and�knowledge�sharing�rather�than�role�release.��

3. Managing�workload,�funding�and�quality�service:�The�staffing�model�used�in�the�Southern�ECI�Service� requires� staff� to�be�able� to� ‘bill’�eighty�percent�of� their� 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�developing�resources�or�strategies,�time�spent�in�upskilling,�and�information�searches�related�to�the�client,�is�also�‘billed’�against�the�client’s�funded�total�hours�of�service�delivery.�Respondents�in�this�study�raised�many�concerns�with�this�approach,�not� least�the�impact�on�clients�and�the�impacts�on�the�overall�quality�of�service.�Given�that�therapists�are�restricted�in�how�much�time�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�developing�a�customised�resource,�or�researching�the�latest�evidence�in�relation�to�a�proposed�technique).� Overall,� this� approach� to� the� management� of� service� delivery� runs� counter� to�achieving�the�best�quality�service�possible,�and�results�in�a�rationed�and�‘pared�down’�service.�

Similarly,�the�structure�of�‘billable�hours’�with�the�target�of�eighty�percent�of�a�staff�member’s�time� billable� to� clients,� also� undermines� interprofessional� and� collaborative� work,� as� well� as�ongoing�professional�development.�This�study�repeatedly�identified�examples�of�these�activities�being� restricted� or� denied� due� to� the� requirement� to� spend� paid�work� hours� in� the� delivery�services,�without�adequate�allocation�of� time�to�the�professional�needs�of� staff�as�part�of� this�service�delivery�role.��

4. Recognising�and�affirming�work�to�achieve�outcomes�for�families�and�children�that�go�beyond�‘functioning’.�

While�this�study�found�that�goals�documented�as�part�of�Family�Service�and�Support�Plans�were�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�

Page 39: InquiryintoSocialInclusionforVictorianswithaDisability … · 2014-09-15 · DeakinUniversityAProfErinWilson Page1of43 InquiryintoSocialInclusionforVictorianswithaDisability Submittedby:

Deakin�University���AProf�Erin�Wilson� � Page�39�of�43�

area�of�family�life,�wellbeing,�mental�health,�finances,�and�social�participation,�among�others.��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.�While�there�is�an�argument�to�suggest�that�such�priorities�and�goal�areas�are�too�personal�and�sensitive� to� be� formally� documented,� and� that� to� do� so� would� breach� trust� and� privacy� of�families,�greater�valuing�and�recognition�of�this�work�is�required�within�services.��

Conclusion���commentary�

Unfortunately� there� is� not� sufficient� time� to� undertake� a� detailed� synthesis� or� analysis� of� the� data�presented�above.�However,�a� range�of�concluding�comments�can�be�made� in�relation�to�the� learnings�from�this�suite�of�work:�

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�definition�of�this�concept�to�include�whole�of�life�areas�and�rights.�The�phrase�'social�inclusion'�is�often�a�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'�across�all�domains�of�life.�This�is�rarely�translated�into�program�and�funding�policy,�where�frequently�the�understanding�of�what�is�allowable�to�fund�in�relation�to�this�concept,�is�extremely�narrow.�This�severely�limits� the� opportunities� of� people�with� disabilities� to� achieve� social� inclusion� in� its� fullest� and,� some�would�argue,�any�extent.�

2.�The�research�above�identifies�many�facilitators�of�and�barriers�to�social�inclusion.�While�some�barriers�(indeed�a�substantial�proportion)�relate�to�identifiable�resources,�another�major�chunk�relate�to�broader�social� and� structural� change� issues,� including� attitudes� to� disability.� These� structural� issues,� including�level�of�income,�are�not�currently�well�addressed�in�any�Victorian�policy�or�well�funded.�Indeed,�current�programs�that�address�such�structural�and�community�development�activities,�are�under�threat�within�a�funding�and�program�regime�that� focuses�on� individualised�funding,� to� the�exclusion�of� the� important�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� for�profit�businesses,�and�as�people�with�disability�seek�to�access�generic�(non�disability)�services�and�facilities�(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�pitted�against�arguments�of�business�profitability.�This�is�a�major�road�block�for�inclusion,�and�much�of�the� advances� to� date�may� stall� at� this� point.� Appropriate� responses� to� this� include� legislative� reform�across�a�range�of�areas�(building,�retail,�health�services,�aged�care�etc)�as�well�as�what�has�traditionally�been�funded�community�development�activity�that�contributes�to�policy�and�program�design�based�on�collective�needs.�

Page 40: InquiryintoSocialInclusionforVictorianswithaDisability … · 2014-09-15 · DeakinUniversityAProfErinWilson Page1of43 InquiryintoSocialInclusionforVictorianswithaDisability Submittedby:

Deakin�University���AProf�Erin�Wilson� � Page�40�of�43�

References�

Australian� Bureau� of� Statistics.� (2010)� ‘4159.0� �� General� Social� Survey:� Summary� Results’,�Commonwealth� of� Australia.,� http://www.abs.gov.au/ausstats/[email protected]/cat/4159.0� (viewed� 3�April,�2013).�

Australian� Bureau� of� Statistics.� (2011)� ‘4439.0� �� Social� Participation� of� People� with� a� Disability’,�Commonwealth� of� Australia,� http://www.abs.gov.au/ausstats/[email protected]/mf/4439.0� (viewed� 27�June�2012).�

Davis,�2005,�'Invisible�Disability',�Ethics,�vol.�116,�no.�1,�pp.�153�213.�

Deane,�K2009,�Shut�Out:�The�Experience�of�People�with�Disabilities�and�Their�Families�in�Australia,�Australian�Government�

Department�of�Human�Services.�(2007)�‘Understanding�the�Quality�Framework�for�Disability�Services�in�Victoria,� A� resource� guide� for� disability� service� providers� (2007).�http://www.dhs.vic.gov.au/disability/improving_supports�(viewed�12�Aug�2008).�

Early�Years�Services�Branch,�Department�of�Human�Services�(2005),�Early�Childhood�Intervention�Services:�Program�Framework,�(managed�by�Department�of�Education�and�Early�Childhood�Development�as�of�Aug�27�2007).��http://www.eduweb.vic.gov.au/edulibrary/public/earlychildhood/intervention/framework2005.pdf�(viewed�December�22,�2009).�

Grewal,�I,�Joy,�S,�Lewis,�J,�Swales,�K�&�Woodfield,�K�2002,�''Disabled�for�life?'�attitudes�towards,�and�expereinces�of,�disability�in�Britain:�A�Report�of�Research�Carried�out�by�the�National�Centre�for�Social�Research�on�Behalf�of�the�Deportment�for�Work�and�Pensions�',�pp.�1�271.�

Hannon,�F2010,�Literature�Review�on�Attitudes�Towards�Disability,�by,�vol.�9.National�Disability�Authority�

Harasymiw,�S�&�Horne,�M�1976,�'Teacher�Attitudes�Toward�Handicapped�Children�and�Regular�Class�Integration�',�Journal�of�Special�Education,�vol.�10,�no.�4,�pp.�303�44.�

Hayes,� A.� and� Gray,� M.� (2008)� ‘Social� Inclusion:� A� policy� platform� for� those� who� live� particularly�challenging�lives.�Family�Matters,�78,�4�9.�

Hunt,�CS�&�Brandon,�H�2004,�'Changing�Attitudes�Toward�People�with�Disabilities:�Experimenting�with�an�Educational�Intervention',�Journal�of�Managerial�Issues,�vol.�16,�no.�2,�pp.�266�80.�

ISO9999.�(2007).�Assistive�products�for�persons�with�disability�—�Classification�and�terminology:�ISO�

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).�

Jenkin,�E.�&�Wilson,�E.�(2009).�Inclusion:�making�it�happen.��Key�elements�for�disability�organisations�to�facilitate�inclusion.�Melbourne:�Scope�(Vic).�

Page 41: InquiryintoSocialInclusionforVictorianswithaDisability … · 2014-09-15 · DeakinUniversityAProfErinWilson Page1of43 InquiryintoSocialInclusionforVictorianswithaDisability Submittedby:

Deakin�University���AProf�Erin�Wilson� � Page�41�of�43�

Layton,�N;�Colgan,�S;�Wilson,�E;��Moodie,�M�&�Carter,�R.�(2010).�The�Equipping�Inclusion�Studies:�Assistive�Technology�Use�and�Outcomes�in�Victoria.��Burwood:�School�of�Health�and�Social�Development�and�Deakin�Health�Economics,�Deakin�University.�

Moore,� T.� and� Sargood,� S.� (2005),� Starting� With� the� End� in� Mind:� Outcome� Statements� for� Early�Childhood� Intervention� Services,� August� 2005,� Early� Childhood� Intervention� Australia� (Victoria�Chapter),�Melbourne.�

Nussbaum,� M.� C.� (2003).� 'Capabilities� as� fundamental� entitlements:� Sen� and� social� justice',� Feminist�Economics,�9,�(2�3),�33�59.�

Office� of� the� Commissioner� for� Human� Rights.� (2010)�Monitoring� the� Convention� on� the� Rights� of�Persons�with�Disabilities.�Guidance�for�Human�Rights�Monitors.�Professional�Training�Series�No.�17,�United�Nations,�New�York�and�Geneva.�

Palmer,�G.,�MacInnes,�T.�and�Kenway,�P.�(2006)�‘Monitoring�poverty�and�social�exclusion�2006’,�Joseph�Rowntree�Foundation,�U.K.�

Parekh,�A.,�MacInnes,�T.�and�Kenway,�P.�(2010)�‘Monitoring�poverty�and�social�exclusion�2010’,�Joseph�Rowntree�Foundation,�U.K.��

Pate,�A.�&�Horn,�M.� (2006).�Aids�and�Equipment�for�Victorians�with�disabilities�–�entitlement�or�hand�out?�A�Position�Paper.�Recommendations�for�an�effective�Victorian�Aids�and�Equipment�Program�for�the�21st�century.�Melbourne:�Melbourne�CityMission.�

Phillips,�L.,�Wilson,�L.�&�Wilson,�E.�(2010).�Assessing�behaviour�support�plans�for�people�with�intellectual�disability�before�and�after�the�Victorian�Disability�Act�2006,�Journal�of�Intellectual�and�Developmental�Disability,�35(1),�1�5.��

Saunders,�P.,�Naidoo,�Y.�and�Griffiths,�M.�(2007)�‘Towards�New�Indicators�of�Disadvantage:�Deprivation�and�Social�Exclusion�in�Australia’,�Social�Policy�Research�Centre:�Sydney.�

�Saunders,�P.,�Naidoo,�Y.�and�Griffiths,�M.�(2008)�‘Left�out�and�missing�out:�Disability�and�disadvantage’,�Social�Policy�Research�Centre:�Sydney.�

�Saunders,�P.�and�Wong,�M.� (2009).�Still�doing� it� tough:�an�update�on�deprivation�and�social�exclusion�among�welfare�service�clients,�Sydney:�Social�Policy�Research�Centre.�

Scior,�K�2011,�'Public�awareness,�attitudes�and�beliefs�regarding�intellectual�disability:�A�systematic�review',�Research�In�Developmental�Disabilities,�vol.�32,�no.�6,�pp.�2164�82.�

Stanlland,�L2009,�Public�Perceptions�of�Disabled�People:�Evidence�from�the�British�Social�Attitudes�Survey�2009�Office�of�Disability�Issues�.�

Tan,�Boon�Siong�(2013)�What�are�the�negative�attitudes�experienced�by�people�with�disability�in�Australia,�and�do�they�differ�according�to�disability�type�or�severity�of�disability?�Honours�Thesis,�School�of�Health�and�Social�Development,�Deakin�University�(Supervised�by�AProf�E�Wilson�an�Dr�K�Murfitt).�

Page 42: InquiryintoSocialInclusionforVictorianswithaDisability … · 2014-09-15 · DeakinUniversityAProfErinWilson Page1of43 InquiryintoSocialInclusionforVictorianswithaDisability Submittedby:

Deakin�University���AProf�Erin�Wilson� � Page�42�of�43�

Thompson,�D,�Fisher,�K,�Purcal,�C,�Deeming,�C�&�Sawrikar,�P.2011,�Community�Attitudes�to�People�with�Disability:�Scoping�Project�by�Australian�Government�Department�of�Families,�Community�Services�and�Indigenous�Affairs.�

White,�AE�&�Clark,�LL�2010,�'Overcoming�ignorance�and�stigma�relating�to�intellectual�disability�in�healthcare:�a�potential�solution',�Journal�Of�Nursing�Management,�vol.�18,�no.�2,�pp.�166�72.�

Wigham,�S.,�Robertson,� J.,� Emerson,�E.,�Hatton,�C.,� Elliott,� J.,�McIntosh,�B.,� Swift,�P.,�Krinjen�Kemp,�E.,�Towers,�C.,�Romeo,�R.,�Knapp,�M.,�Sanderson,�H.,�Routledge,�M.,�Oakes,�P.�&� Joyce,�T.� (2008).�‘Reported� goal� setting� and� benefits� of� person� centred� planning� for� people� with� intellectual�disabilities’:�Journal�of�Intellectual�Disabilities,�12,�2,�143�152.�

Wilson,� E.� (2006),� Defining� and� measuring� the� outcomes� of� inclusive� community� for� people� with�disability,�their�families�and�the�communities�with�whom�they�engage,�in�C�Bigby,�C�Fyffe�and�J�Mansell�(Eds),�From�Ideology�to�reality:�current�issues�in�implementation�of�intellectual�disability�policy,� Proceedings� of� the� Roundtable� on� Intellectual� Disability� Policy,� La� Trobe� University,�Bundoora�

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.�

Wilson,�E.�&�Campain,�R.�(submitted���under�review)�Reflections�on�measuring�outcomes�of�individualised�plans�for�people�with�disability.�

Wilson,�E.�&�Hagiliassis,�N.�(2012).�Measuring�outcomes�of�self�directed�services�and�supports.�National�Disability�Services,�'Preparing�for�the�new�world'�Conference,��Adelaide,�May�2012.�

Wilson,�E.;�Hagiliassis,�N;�Nicola�Richmond,�K.�&�Mackay,�A.�(2007).�Measuring�the�outcomes�of�inclusive�communities.�42nd�ASSID�Conference,�Perth.;��

Wilson,�E.;�Nicola�Richmond,�K.;��Hagiliassis,�N;��Campain,�R.&�Mackay,�A.,�(2008).�Defining�and�measuring�the�outcomes�of�inclusive�communities.�WA�National�Disability�Services�‘Living�in�the�West’�Conference,�Perth;��

Wilson,�E.;�Nicola�Richmond,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�engage.�International�Cerebral�Palsy�Conference�Sydney,�February�2009;��

Wilson,�E.,�Wong,�J.,�&�Goodridge,�J.�(2006).�Too�little�too�late:�Wait�times�and�cost�burden�for�people�with�a�disability�in�seeking�equipment�funding�in�Victoria.�Melbourne:�Scope�(Vic).�

World� Health� Organization� (WHO)� (2001),� International� Classification� of� Functioning,� Disability� and�Health�(ICF),�World�Health�Organisation,�Geneva,�Switzerland.�

Page 43: InquiryintoSocialInclusionforVictorianswithaDisability … · 2014-09-15 · DeakinUniversityAProfErinWilson Page1of43 InquiryintoSocialInclusionforVictorianswithaDisability Submittedby:

Deakin�University���AProf�Erin�Wilson� � Page�43�of�43�