2.1 terminology and data - national disability services · sydney, nsw 2000 funded by nsw ......

Workbook2.1PersonCentredPracticeAcrossCultures

TerminologyandData–AguidetounderstandingculturaldiversityanddisabilityJuly2016

futures UPFRONT

ThisworkbookhasbeendevelopedforNationalDisabilityServicesby:BarbelWinter,ManagingDirector,futuresUpfrontandMariaKatrivesis,ConsultantandTrainerFirstpublished(July2016)©futuresUpfrontFormoreinformationandforpermissiontoreproducepleasecontact:futuresUpfrontemail:[email protected]:www.futuresupfront.com.au ProducedbyNDSNSWLevel18,1CastlereaghStSydney,NSW2000FundedbyNSWDepartmentofFamilyandCommunityServices.©ThispublicationiscopyrightAllrightsreserved.ExceptasprovidedintheCopyrightAct1968(Commonwealth),nouseofthiswork,whichiswithintheexclusiverightofthecopyrightowners,[email protected]

AboutNationalDisabilityServicesNationalDisabilityServicesisthepeakbodyfornon-governmentdisabilityservices.Itspurposeistopromotequalityserviceprovisionandlifeopportunitiesforpeoplewithdisability.NDS’sAustralia-widemembershipincludesmorethan1000non-governmentorganisations,whichsupportpeoplewithallformsofdisability.NDSprovidesinformationandnetworkingopportunitiestoitsmembersandpolicyadvicetostate,territoryandfederalgovernments.

Table of Contents

1. Preface 21.1 Howtousethisworkbook? 21.2 Whatisthisworkbookabout? 31.3 Outcomes 31.4 Whoisthisworkbookfor? 31.5 Howlongwillittaketocomplete? 3

2. The Workbook 42.1 Introduction 42.2 Whoarewetalkingabout? 5

2.2.1 DisabilityDataandtheNDIS 52.2.2 CALDData 52.2.3 Languagedata 62.2.4 DisabilityandCALD 62.2.5 Disability,CALDandtheNDIS-aproblemwiththecurrentdefinition 7

3. Conclusion 10

Workbook2.1:TerminologyandData

©futuresUpfront|2016|PersonCentredPracticeAcrossCultures

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1. Preface

ThisworkbookispartofaseriesofresourcesforthedisabilityservicessectordesignedbyfuturesUpfrontforNDSwithfundingprovidedbytheNSWDepartmentofFamilyandCommunityServices;Ageing,DisabilityandHomeCare.

Theworkbooksinthisseriesare:

1.IndividualPractices–workingwithpeoplefromCALDbackgroundswithdisability

1.1Empathy–apracticetoconnectacrosscultures

1.2Activelistening–unconditionalpositiveregardacrosscultures

1.3Choicemaking–cross-culturaldifferencesandwhatcanwelearnfromthem

1.4ReflectivePractice–whydifferentpointsofviewmatter

1.5Workingeffectivelywithinterpreters

2.OrganisationalPractices–buildingaculturallyresponsiveorganisation

2.1Terminologyanddata–aguidetounderstandingculturaldiversityanddisability

2.2Makingthebusinesscase–whydiversityisgoodforbusiness

2.3Aculturallyresponsivepersoncentredorganisation–keyelements

2.4Leadingtowardsculturalresponsiveness–apracticalguideformanagers,teamleadersandcoaches

2.5Buildingadiverseworkforce–practicalstrategies

2.6Valuingbilingualworkers–strategiestorecruit,trainandretain

3.CommunityEngagement–workingalongsidediversecommunities

3.11Community@atime–culturallyresponsivecommunityengagementprinciplesandelements

3.2MakingLinks–networkingwithCALDCommunities

3.3Crossculturalstorybasedmarketing–1story@atime

Thisworkbookispartof‘OrganisationalPractices–buildingaculturallyresponsiveorganisation’.

1.1 How to use this workbook? Thisworkbookcanbeusedinmanydifferentways,including:

´ Asaself-pacedlearningprogrambyanindividual



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´ Asaself-pacedlearningprogramforagroup

´ Aspartofformaltrainingorganisedbyanorganisation

´ Aspartofcoachingandmentoring

Thisworkbookincludesexercisesandopportunitiesforreflections(whenworkingbyyourself)ordiscussions(whenworkingwithothers).

Thereisplentyofroominyourworkbooktotakenotesandmakecomments.

1.2 What is this workbook about? ThisworkbookisthefirststepinhelpingyouunderstandthedifferentwordsusedtodescribepeoplefromCALDbackgroundswithdisabilityandhowtheavailabledataonculturaldiversityisgatheredandconstructed.ItisthefoundationforWorkbook2.2Makingthebusinesscase

1.3 Outcomes Attheendoftheworkbookyouwill:

´ BeabletoidentifythedifferenttermsandwhattheymeaninrelationtopeoplefromCALDbackgroundswithdisability

´ Understandwhylanguageaswellasculturematterwhen‘counting’peoplefromCALDbackgroundswithdisability

1.4 Who is this workbook for? ´ PeopleinterestedinunderstandingmoreaboutpeoplefromCALD

backgroundswithdisability

´ Peopleintheorganisationinterestedinlookingforbusinessopportunities

´ PeoplewhowanttoconvincetheirorganisationtodomoreforpeoplefromCALDbackgroundswithdisability

´ Anyoneinterestedinmakingtheirorganisationmoreresponsivetothelocalcommunity.

1.5 How long will it take to complete? Thisworkbookshouldtakeabout30minutestocomplete.



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2. The Workbook

2.1 Introduction Belowwewillshowthatbetween20-25%ofallpeoplewithdisabilityarefromculturallyandlinguisticallydiverse(CALD)backgrounds.Inotherwords,acrossNSWbetween1in5to1in4peopleaccessingdisabilityservicesarefromaCALDbackground.

However,limiteddataavailablesuggeststhatcurrentlytherateofpeoplefromCALDbackgroundswithdisabilityaccessingdisabilityservicesisonlybetween5-10%.Thismeansthatbetween50-80%ofpeoplefromCALDbackgroundswithdisabilityaremissingoutonservices1.Whilethedataislimitedandreliesonsomeapproximations,itneverthelessclearthatthereisalargeuntappedmarketamongpeoplefromCALDbackgroundswithdisability.ServiceprovidersthatareabletomeettheculturalandlinguisticneedsofindividualsfromCALDcommunitieswillbewellplacedto.

ThegeographicdistributionofpeoplefromCALDbackgroundswithdisabilityisunevenacrossNSW,withtheSydneyregionbeinghometothelargestnumberofpeople.However,withthediversityofAustralia’spopulationincreasing,theproportionofpeoplefromCALDbackgroundssettlinginruralandregionalareasofNSWisalsoincreasing.

Reflection

Thinkingaboutthepeoplesupportedbytheorganisationyouworkfor.WhatdoyouthinkisthepercentageofpeoplefromCALDbackgroundswithdisability?Doyouthinkthisreflectsthediversityofthegeographicareayouworkin?

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1Dataconsultedinclude:NDIA-QuarterlyReport2014-15;AustralianInstituteofHealthandWelfare-DisabilitySupportServicesData,2014;ADHC–MDSdata2013-14(ithastobenotedthatADHCprovidedservices,incontrasttoADHCfundedservices,appeartobedeliveringequitableservices,withpeoplefromCALDbackgroundsmakingupalmost30%ofserviceusers);averylimitednumberofNGODisabilityServicesAnnualReport



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2.2 Who are we talking about? BeforestartingtoworkwiththedatainWorkbook2.2MakingtheBusinessCase,itisimportanttounderstandwhatthewordsandthedataactuallymeans.

2.2.1 DisabilityDataandtheNDIS

TheAustralianBureauofStatistics(ABS)SurveyonDisability,AgeingandCarersidentifiesthat18.5%peoplehavedisability(orapprox.4.2millionnationally)2.TheProductivityCommissionReport3identifiedthatabout10%ofallpeoplewithdisabilitywillbeeligibleforfundedsupportsundertheNationalDisabilityInsuranceScheme(or410,000peoplenationally).

About1in5peopleinAustraliahavedisability.About10%ofthesewillbeeligiblefortheNDIS.

2.2.2 CALDData

WhenlookingatCALDitisgenerallyagreedthatthetermCALDismadeupofatleasttwogroupsofpeople:

´ Peoplewhowerebornoverseasinanon-Englishspeakingcountry.(about1.2millionpeopleinNSW),generallyreferredtoasfirstgenerationmigrantsorrefuges;and

´ Thechildrenofthepeoplewhowereborntofirstgenerationmigrantsorrefuges,generallyreferredtoassecond-generationmigrantsorrefugees.(anadditional1.2millionpeopleinNSW).

Peoplewhowerebornoverseasinanon-Englishspeakingcountry:

Thisgroupisgenerallyreferredtoasfirstgenerationmigrantsorrefugees.Basedonthe2011ABSCensusdatathereare6.9millionpeoplelivinginNSW.About1.2millionpeopleinNSWwereborninanon-Englishspeakingcountry(approx.18%ofallpeople)

Peoplegenerallyreferredtoassecond-generationmigrantsorrefugees

Thisgroupismadeupofchildrenwhoseparent/s(eitheroneorboth)werebornoverseasinanon-Englishspeakingcountry.Therateofchildrenborntooverseas–bornmothersisabout2childrenperwoman.TherearesomenotableexceptionswithwomenfromChinesebackgroundhavingalowerbirthrate(1.5childrenperwoman),whilewomenfromLebanese

2ABS(2013):Disability,AgingandCarers,SummaryofFindingshttp://www.abs.gov.au/ausstats/[email protected]/mf/4430.03ProductivityCommission(2011)DisabilityCareandSupport,page160



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backgroundarehavingchildrenatasignificantlyhigherrate(3.3childrenperwoman)4.

Usingtheavailabledatawecouldsimplyaddanother1.2millionpeoplewhoareidentifiedassecondgenerationmigrantsorrefugeesinNSW.

ThereareotherswhoidentifyasbeingfromCALDbackground,whosegrandparents,orevenmoredistantfamilymembers,cametoAustraliafromothernon-Englishspeakingcountries.Censusdatacollectedonancestryidentifiesthatthereareover1.5millionpeoplewhosaythateitherbothoroneoftheirparentsarefromanon-Englishspeakingcountry.

Peoplewhoaresecondgenerationmigrantsorrefugesareimportanttoconsider,because,asyouwillseebelowinafewexamples,culture(notjustlanguage)playsanimportantinhowpeopleconnecttoandinteractwithsystems,servicesandpeople.

Basedonallthedataabove,itcanbesafelyassumedthatatleast25%ofpeoplelivinginNSWarefromaCALDbackground(or1in4people).

2.2.3 Languagedata

1.5millionpeopleinNSWspeakalanguageotherthanEnglishathome(LOTE),about1in5peopleinNSW.ThisinformationdoesnotsayanythingaboutwhetherthepersonwhospeaksLOTEathomespeaksanyEnglishatallorhowproficienttheyareinEnglish.TheCensuscapturesthatinformationaswellinanotherquestion.1.7millionpeopleansweredthequestionabouttheirlevelsofEnglishproficiencyinthe2011generalCensus.218,000orabout4%ofpeopleinNSWsaidtheydonotspeakEnglishwellornotatall.

2.2.4 DisabilityandCALD

Forourpurposeshere,weassumethattheincidenceofdisabilityamongCALDcommunitiesinAustraliaisapproximatelythesameasitisforthegeneralpopulation(i.e.1in5people).However,itisimportanttonotethattheNationalEthnicDisabilityAlliance(NEDA),usingarangeofdatasets,arguesthat:

”ThereisahigherprevalenceofimpairmentforpeopleborninanonEnglishspeakingcountryagedover45yearsofage,especiallyfor‘firstwave’nonEnglishspeakingmigrants,upto3timesthatoftheAustralianbornpopulation.”5

4ABS-AustralianSocialTrends(2008)4102.8HowmanychildrenhavewomeninAustraliahad?(http://www.abs.gov.au/AUSSTATS/[email protected]/Lookup/4102.0Chapter32020085NEDA(2010):PeoplefromNESBwithdisabilityinAustralia:Whatdoesthedatasay?http://www.neda.org.au/index.php/statistics



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2.2.5 Disability,CALDandtheNDIS-aproblemwiththecurrentdefinition

TheNationalDisabilityInsuranceAgency(NDIA),inlinewithsomeABSdefinitions,definesCALDasanyonewhosecountryofbirthisnotAustralia,theUK,theUSA,CanadaorSouthAfricaorwhoseprimarylanguagespokenathomeisnotEnglish.

However,focusingonlyoncountryofbirthandlanguagespokenathomedeniestheimportanceofcultureandthislimiteddefinitionessentiallyreducesthenumberofpeoplewithdisabilitycountedasbeingfromCALDbackgroundsbyabout50%.

TheDiversityandDisabilityAlliance(DDAlliance),isauser-leddisabilitysupportorganisation,runbyandforpeoplewithdisabilityfromdiversebackgroundswiththesupportoffamiliesandallies.Itisstrivingforaninclusive,diverseandjustsocietywherepeoplewithdisabilityhavevoice,choiceandcontrolovertheirlives.DDAllianceargue(inlinewithmanyothers)theimportanceofusingculture,aswellasthecountryofbirth(COB)andlanguagesspokenathome(LOTL)tocreateandprovideculturallyresponsivesystemsandsupportsforpeoplefromCALDbackgroundswithdisability.

Workbook Exercise

DDAlliancerecommendsthatthedatacurrentlycollectedonancestryshouldbecombinedwithotherdatatoprovidearicher,moreinclusivesourcetocapturethediversityofpeoplewithdisability.

Thinkingaboutthecasestudiesabove,andyourownexperiences,canyouidentifywhyculturemightbeimportanttoanindividual?

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ThefollowingcasestudiesaimtoillustratethepointmadebyDDAlliance:

Case studies6

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Diana is a young woman from Chinese background with physical disability. She was born in Australia and speaks fluent English and Mandarin and speaks both languages equally at home. She lives with her mother who came to Australia as an adult and speaks little English. Her father passed away a couple of years ago.

Diana made contact with a rehabilitation service to get some help with employment and specialist equipment. The first meeting with the case manager occurred at Diana’s home. The case manager spent some time gathering background information about Diana’s circumstances. Then she started advising Diana about the need to be more independent and that she should start to plan towards moving out of home. Throughout the conversation the case manager kept referring to Diana’s mum as ‘your carer’ and suggested that she would appreciate ‘having her own space’. Diana found the advice to be judgmental. She explained that taking care of one’s parents is very important in her upbringing and it is her duty to look after her mum, particularly when her father is no longer with them. She also told the case manager that her mum sees herself as a mother, not a carer.

Diana didn’t tell her mum what the case manager said for fear of upsetting her. She felt very negative about the meeting. A couple of days later she called the case manager and told her that she no longer required any service. This negative experience had a significant impact on her and made her cautious about asking for services.

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Sabar is 3 years old and has recently been diagnosed with developmental delay. Her professional parents migrated to Australia from Bangladesh 5 years ago. They decided to speak English with Sabar at home as they want to focus on helping her to talk. They feel this will help her language development, even though the speech pathologist said that maintaining her first language was important. The speech pathologist also recommended that they take her to the local playgroup so that she can play and learn with other children. However the family are reluctant as they do not want other families in the community to

6CasestudiesusedwiththepermissionofDDAlliance(www.ddalliance.org.au)



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Case studies6 know that Sabar has a developmental delay.

As Sabar was born in Australia and her parents indicate they speak English at home, Sabar would not be counted by the NDIA as being from a CALD background.

Forthepurposeshere,howdoyouthinkcultureimpactsonindividualsreceivingservicesfromanorganisationsuchastheoneyouareworkingfor?

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3. Conclusion

ThisworkbookaimedtoassistyouinunderstandingthedifferentsetsofdatacollectedinrelationtopeoplefromCALDbackgroundswithdisabilityandwhatthedatameans.

ThisworkbookprovidesthebasisforWorkbook2.2:Makingthebusinesscase.

Reflection

Whataresomeofthetakeawaymessagesfromthisworkbook?Aretherethingsyoudisagreewith?Wastheresomethingthatsurprisedyou?

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2.1 terminology and data - national disability services · sydney, nsw 2000 funded by nsw ......

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