Making Mental Health Policy Inclusive of People with Intellectual Disability

ISBN‐10:0‐7334‐3749‐4ISBN‐13:978‐0‐7334‐3749‐6EAN:9780733437496

ContactDepartmentofDevelopmentalDisabilityNeuropsychiatrySchoolofPsychiatry|UNSWMedicine34BotanyStreet,UNSWSydneyNSW2052AUSTRALIA

P +61299319160E dddn@unsw.edu.auW 3dn.unsw.edu.au@3DN_UNSW

Reportpreparedby:

DrAngelaDew,SeniorResearchFellow1

AssociateProfessorLeanneDowse,ChairIDBS,ProjectLead1

MsUlrikaAthanassiou,ResearchAssistant1

ProfessorJulianTrollor,ChairIDMH,ChiefInvestigator2

DrSimoneReppermund,SeniorResearchFellow2

1IntellectualDisabilityandBehaviourSupport(IDBS)Program,SchoolofSocialSciences,ArtsandSocialSciences,UNSWSydney

2IntellectualDisabilityMentalHealth(IDMH),DepartmentofDevelopmentalDisabilityNeuropsychiatry(3DN),SchoolofPsychiatry,UNSWSydney

TheprojectisfundedbyanNHMRCPartnershipforBetterHealthGrant:ImprovingtheMentalHealthOutcomesofPeoplewithIntellectualDisabilityAPP1056128.

Moredetailsabouttheprojectcanbefoundhere:https://3dn.unsw.edu.au/project/national‐health‐medical‐research‐council‐partnerships‐better‐health‐project‐improving‐mental

Table of Contents ExecutiveSummary.......................................................................................................................................................1

ProjectOverview........................................................................................................................................................1

KeyFindings.................................................................................................................................................................1

RecommendationsArising.....................................................................................................................................2

1.ContextoftheReport...........................................................................................................................................3

1.1NationalHealthandMedicalResearchCouncil(NHMRC)Grant2014‐18...........................3

1.2.AboutthisReport..........................................................................................................................................3

2.Background..............................................................................................................................................................4

2.1.IntellectualDisabilityandMentalHealth...........................................................................................4

2.1.1Definitions.....................................................................................................................................................4

2.1.2Prevalence.....................................................................................................................................................4

2.2Definingpolicyanditsimportance.........................................................................................................5

2.3IntellectualDisabilityMentalHealthPolicy.......................................................................................6

3.Methods.....................................................................................................................................................................7

3.1.Identifyandcollectpolicydocuments.................................................................................................7

3.2.Developananalysisframework..............................................................................................................8

3.3.Qualitativecontentanalysis.....................................................................................................................8

3.4.Governance......................................................................................................................................................9

4.Results.......................................................................................................................................................................9

4.1Disabilitylegislationandpolicy............................................................................................................11

4.1.1DisabilityLegislation..............................................................................................................................11

4.1.2DisabilityPolicy........................................................................................................................................11

4.2MentalHealthandHealthlegislationandpolicy...........................................................................15

4.2.1.Mentalhealthlegislation.....................................................................................................................15

4.2.2Mentalhealthandhealthpolicy........................................................................................................17

4.3Applyingthepolicyanalysisframework...........................................................................................23

4.3.1Context.........................................................................................................................................................23

4.3.2Actors/Stakeholders..............................................................................................................................24

4.3.3Process.........................................................................................................................................................25

4.3.4Content.........................................................................................................................................................27

4.4PolicyCaseStudy:NewSouthWales.................................................................................................35

5.Discussion..............................................................................................................................................................39

6.InclusiveIntellectualDisabilityMentalHealthPolicy........................................................................41

6.1Context.............................................................................................................................................................43

6.2Stakeholders..................................................................................................................................................43

6.3Process.............................................................................................................................................................44

6.4Content.............................................................................................................................................................44

7.Conclusion.............................................................................................................................................................45

References..................................................................................................................................................................47

AppendixAPartnershipTeam..........................................................................................................................51

AppendixBPolicyAnalysisFramework.......................................................................................................53

Figures Figure1RelevantAustralianLegislationandCommonwealthPolicy.................................................10Figure2Modelforhealthpolicyanalysis(fromWaltandGilson,1994,p.354).............................23Figure3MappingofNSWLegislationandPolicy..........................................................................................36Figure4InclusiveIntellectualDisabilityMentalHealthPolicy...............................................................42

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Executive Summary It isestimatedthat1–2%ofAustralianshavean intellectualdisabilitywith57%oftheseestimatedtohaveamentaldisorder.ThisreportaddressesoneaimofaNationalHealthandMedical Research Council ‘Partnerships for Better Health’ Grant: Improving theMentalHealth Outcomes of People with Intellectual Disability, funded from 2015 to 2018, andfocussing on the inclusion of peoplewith intellectual disability inmental health policy inAustralia.

ProjectOverview

In order to address the individual, structural and social concerns that result from poorrecognition and response to mental illness among people with intellectual disability, theprojectreportedheremapsthecurrentpolicylandscapeinrelationtointellectualdisabilitymentalhealth. It takes as itsprimary formof evidencepolicydocuments across the threekey policy domains of health, mental health and disability. Sixty one AustralianCommonwealth,StateandTerritorymentalhealthandhealthandfivekeyCommonwealthdisability policy documents were analysed to determine the extent to which the specificneedsofpeoplewithintellectualdisabilitywhoalsohavementalill‐healtharerepresented.An analysis framework was developed to identify the strengths/facilitators andgaps/barriers in eachpolicy document related to the inclusionof peoplewith intellectualdisability.Thirtyeightdocumentswerementalhealthspecificpolicyandrelateddocuments.Twenty threedocumentswere general health policy and relateddocuments that includedmention of mental health. Nineteen of the documents included mention of people with‘intellectual disability’ and/or associated terms, of these 16 were mental health specificdocuments.

KeyFindings

Overallthereisalackofrecognitionofpeoplewithintellectualdisabilityasagroupathighriskofexperiencingmentalill‐healthincurrenthealth,mentalhealthanddisabilitypolicyinAustralia. The key weaknesses identified in the policy documents related to the lack ofexplicit identification or inclusion of peoplewith intellectual disability as a group at highriskofmentalill‐healthandagenerallackofrecognitionoftheirspecificneedsforexpertise,modifications and adaptations in order to bewell supported inmental health and healthservices.Fivegeneralstrengthscommontothementalhealthandhealthpolicydocumentsanalysedwereidentifiedwhichpotentiallyprovidethefoundationsforgreaterrecognitionand inclusion of peoplewith intellectual disability andmental illness including: a values‐based approach, recognition of diversity, a life‐course approach, focus on workforcedevelopment, and building in service outcome checks and balances such as monitoring,evaluationandresearch.

Two documents provided positive exemplars of inclusion of the mental health of peoplewithintellectualdisabilityinpolicy. TheNewSouthWalesLivingWell,AStrategicPlanfor.MentalHealth inNSW and the Victorian BecauseMentalHealthMatters both identify theneedfordedicatedstrategiestoensureappropriateandaccessibleservicesforthisgroup.

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RecommendationsArising

Thevaluesunderpinningallpolicydocumentsindicateaconsistentplatformofrights‐based,consumer and strengths focussed principles. These provide a foundation to enable policythatisinclusiveofthespecificrequirementsandneedsofpeoplewithintellectualdisabilityandmentalillness.Thereportpointstoaclearneedforacomprehensivepolicyframeworkwhich recognises people with intellectual disability as a group at high risk of mental ill‐health,thatisinclusiveoftheirspecificneedsandinlinewithAustralia’sobligationsundertheUNCRPD.

In designing inclusive intellectual disabilitymental health policy two key principleswereidentifiedfromthereview.First,thereisaneedforacomprehensiveunderstandingofthecontextwithinwhichpolicyisdevelopedinlinewiththeUNCRPD,consistentwiththeNDISandmental health sector interface principles, built on the evidence of the incidence andprevalence of mental illness among people with intellectual disability, and taking as itsstartingpointasharedsetofvaluesacrossthementalhealthanddisabilitysectors.Second,the inclusion of key stakeholders including people with intellectual disability who havemental illnessand their familyandcarersalongwithpolicymakers,disabilityandmentalhealth providers and professionals, and the broader community is key to tailoring theprocessofdeveloping inclusivepolicyandcontent to theneedsofpeoplewith intellectualdisabilityandmentalillness.

The development of inclusive policy requires a human rights framework which engageswhole of government, cross‐sector approaches and includes workforce training andprofessionaldevelopmentthatrecognisestheneedforspecialistinputfrombothdisabilityand mental health sectors. Policy content must be informed by a sound evidence baseregardingthementalhealthneedsofpeoplewithintellectualdisability,beinclusiveofthediversityofissuesarisingacrossthelifecourse,includemeasurableactionsandtargets,anddetailstrategiesforinclusiveandaccessibleservices.

A knowledge translation approach is required to ensure that policy is informed by bestevidence and practice and, that end users are engaged throughout the policy process. Aninclusiveapproachtothedevelopmentandimplementationofintellectualdisabilitymentalhealthpolicywilladdressthecurrent lackofattention,ashighlightedinthisreport,totheimportantareaofhowtobestmeetthementalhealthneedsofindividualswithintellectualdisability.

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1.ContextoftheReport

1.1NationalHealthandMedicalResearchCouncil(NHMRC)Grant2014‐18

Inordertoaddressthepoorinclusionofpeoplewithintellectualdisabilityinmentalhealthpolicy and practice in Australia, a team of investigators and partner organisations (seeAppendixAforfulllistofpartnershipmembers)receivedfundingfromtheNationalHealthandMedical Research Council (NHMRC) to collaboratewith keymental health, disability,education, justice and consumer agencies. The Improving theMentalHealthOutcomes ofPeoplewith IntellectualDisability project is a translational research program conductedfrom2015‐2018whichhasfourmainaims:

Aim1: Createanannualised linkageof administrativeminimumdatasetsofpartnerorganisationstoenableadetailedexaminationofmentalhealthprofilesandserviceutilisation, patterns of cross‐sector service provision including specific gaps, theimpact of recent service initiatives for people with intellectual disabilities, and toenable comprehensive development of intellectual disabilitymental health servicesinNSW.

Aim2:AnalyseCommonwealthandStateandTerritorymentalhealthpolicytodetermine the current representation of peoplewith intellectual disabilitiesand to establish strategieswhichwill enhance intellectual disabilitymentalhealthpolicy.

Aim 3: Engage with stakeholders including consumers and support persons(including familyandnon‐familycarers), to inform improvedrecognitionofmentalillhealth,accessibilityofmentalhealthservicesandmentalhealthpolicyforpeoplewithintellectualdisabilitiesacrossthelifespan.

Aim4:Progresstomaturityapartnershipwhichdevelopsandappliesanevidence‐basedapproachtointellectualdisabilitymentalhealthservicedevelopment,policyandreformacrossthelifespan.

1.2.AboutthisReport

ThisreportaddressesAim2oftheImprovingtheMentalHealthOutcomesofPeoplewithIntellectualDisabilityproject.ThereportpresentsaninterrogationofAustralianCommonwealth,StateandTerritorymentalhealth,healthanddisabilitypolicydocumentstodeterminetheextenttowhichthespecificneedsofpeoplewithintellectualdisabilitywhoalsohavementalill‐healtharerepresented

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Thereportaddressesthefollowingresearchquestions:

1. What is the current representation of people with intellectual disability in mentalhealthpolicy,whatfactorshavegivenrisetothecurrentlevelofrepresentation,andwhatpotentialimpactsdoesthishaveonservicedelivery?

2. What research, advocacy and policy development strategies could enhance therepresentationofpeoplewithintellectualdisabilityinmentalhealthpolicy?

2.Background2.1.IntellectualDisabilityandMentalHealth

2.1.1Definitions

Intellectual disability (also known as Intellectual Developmental Disorder) is a conditioninvolving impairment of general mental abilities that is first apparent during thedevelopmentalperiod(i.e.,beforetheageof18),and impactssignificantlyontheperson’sadaptivefunctioning.Thediagnosisisusuallybasedonstandardisedassessmentofdeficitsin adaptive functioning, intellectual abilities or both.The severity of intellectual disabilitycan usually be described as mild, moderate, severe or profound (American PsychiatricAssociation,2013,p.33).

Mental illness describes a clinically significant disturbance of mood or thought that canaffectbehaviourandcausedistressforthepersonorthosearoundthem.Mentalillnessmayimpacttheperson’sabilitytofunctionnormallyandcaninterferewithaperson’scognitive,emotional and social abilities (Department of Developmental Disability Neuropsychiatry,2014,p.42).OneinfiveAustralianswillsufferamentalillnessinanygivenyear(AustralianGovernment Department of Health and Ageing, 2007). Psychosocial disability is the termused todescribe theexperienceofpeoplewith impairmentsandparticipationrestrictionsrelatedtomentalillness(UNCRPD,2006).

2.1.2Prevalence

Reported prevalence rates of intellectual disability range from 1 – 2% of the population(ABS,2014;Mauliketal.,2011)with57%ofpeoplewithintellectualdisabilityestimatedtohave a mental illness (ABS, 2010; Trollor, 2014). Health surveys have revealed thatcomparedtothegeneralpopulation,peoplewithintellectualdisabilityexperienceverypoor

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health status, characterisedbyhighermortality (Bittles et al. 2002;Patja et al. 2000) andelevatedratesofcommonmentaldisorderssuchasschizophrenia(Borthwick‐Duffy1994),affectiveandanxietydisorders(Cooper1997;Cooper&Holland2007;Strydometal.2007,2009), anddementia that are2‐3 timeshigher than thegeneralpopulation (Cooperet al.,2007;Einfeldetal.,2006,2011;Smileyetal.,2007;Emerson&Hatton,2007).Peoplewithintellectual disability with schizophrenia experience early onset of the disease,underscoringaspecificvulnerabilitytomentalillnessandtheimportanceoftimelyaccesstopsychiatricservices(Morganetal.2008).

Peoplewith intellectual disability in Australia are aminority groupwho experience poormentalhealthstatus,majorbarriersinaccesstomentalhealthservicesandtreatments,andan impoverishedservicesystemcharacterisedbypoorcross‐sectorcoordinationandpoorpreparedness of staff to meet mental health support needs (Trollor, 2014; Evans et al.,2012).Australianintellectualdisabilitymentalhealthpolicyandservicestandardsfallshortof its obligations under the UN Convention on the Rights of Persons with Disabilities(UNCRPD)and lagsbehind leading international standards in intellectual disabilityhealthpolicyandservices.Inareviewoftheliteraturerelatedtothestateofmentalhealthservicesforpeoplewith intellectualdisability inAustralia,Evansetal., (2012,p.1102)stated that“IntheareaofIDmentalhealth,Australia’spoliciesremainvague,andmentalhealthtargetsareilldefined”.AustraliaisnotaloneinthisregardwithChaplinandTaggart(2012)intheUnited Kingdom (UK) and Gough and Morris (2012) in Canada also identifying that themental health needs of people with intellectual disability were not well recognised orreflectedinpolicy.

2.2Definingpolicyanditsimportance

Publicpolicyrepresents“whatgovernmentsdo,why,andwithwhatconsequences”(Fenna,2004, p. 2). Governments set broad strategic policy directions that have implications forsociety as a whole. While on face value defining what policy is seems a relativelystraightforwardexercise, theways inwhich issuesmoveonto thepolicyagendahasbeenrecognised as a process ofmediation and contestation (Hoppe, 1999). For some, policy isseenas theendproductofasuccessionofstepsdeliberately takentoreachanauthoriseddecision(Althaus,Bridgman&Davis,2007).Othersunderstandpolicytoemergeasaresultofacollectiveprocesswherebyparticipantsnegotiatewithoneanotheronbehalfofvariousorganisations and interest groups to identify and pursue goals (Colebatch, Hoppe &Noordegraaf,2010).Ineitherinterpretation,policymakingisacomplexinterplaybetweenfacts(what ‘is’)andvalues(what ‘oughttobe’).Theselessdefinitiveconceptualisationsofpolicyareimportantbecausetheyallowforanunderstandingthatbehindpolicyformationthere are a range of social and structural processes (van Toorn and Dowse 2014). Thisrecognition of complexity helps to account for why some issues are taken up as policyprioritiesandothersremainlessprominent.

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In Australia, policy is made by governments at the Commonwealth and State/Territorylevels. Policies are implemented at various levels:micro (individual),meso (user groups)andmacro (whole population). These three layers are equally important in interrogatingpolicyresponsestoanygivenissue,sincetheyprovideaframeworkforunderstandingtheindividual,structuralandsocialdimensionsofactionsdesignedtoaddressaparticularissue.InexaminingAustralia’scurrentcapacitytoaddressthementalhealthneedsofpeoplewithintellectualdisabilitythesedimensionspointtothreedifferentbutinterconnectedconcerns:

I. The significant personal impact that un‐addressed mental ill‐health has onindividualswithintellectualdisabilityandtheirfamiliesandcarers;

II. The complex structural position of intellectual disabilitymental health as a policyissue that spans multiple policy domains – including health, mental health anddisability,and

III. Thesocial responsibility toaddress issueswhichparticularly impactononeof themost vulnerable and marginalised groups in our community and significantlyimpingeontheirhumanrights.

Inordertoaddressthesethreeinterconnectedconcerns,theprojectreportedheremapsthecurrent policy landscape in relation to intellectual disabilitymental health. It takes as itsprimary formofevidencepolicydocumentsacrossthethreekeypolicydomainsofhealth,mentalhealthanddisability.Indescribinghealthpolicy,Cheug,MirzaeiandLeeder(2010,p.406)refertopolicyas“…aplanthatsteersthedirectionofinvestmentandactiondesignedtoalleviatesuffering, improvehealthcareorprevent illness. It canbemanifestedas laws,bureaucratic edicts, practice guidelines, or more vaguely, simply as guiding principles.”Policyforpeoplewithintellectualdisabilityandmental ill‐healthisthereforeconsideredamajordriverofpractice such that the inclusionorexclusionof the concernsof thisgroupandrelatedissuesdeterminesallocationoffundingandhenceservicedeliverypriorities.

2.3IntellectualDisabilityMentalHealthPolicy

Thebenefitsofa strongpolicy framework in theareaof intellectualdisabilityandmentalhealth are exemplified by the UK in the policy documentsValuingPeople(Department ofHealth UK, 2001) and ValuingPeopleNow (Department of Health UK, 2009). These UKdocuments highlight the need for national service frameworks to enhance theunderstanding and appropriate treatment of the mental health needs of people withintellectualdisabilityacrossthedisability,mentalhealthandmainstreamservicesectors.

Australia’s poor record in the area is identified in theFourthNationalMentalHealthPlanwhich recognises that thosewith intellectual disability and comorbidmental disorder are“overlookedandaccesstoappropriatetreatmentforbothdisabilitiesislimited”

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(Department of Health & Ageing 2009, p.70). The Fourth National Mental Health Planhighlights the urgent need to addressmental disorders in this group, and to do so in aninclusive manner (see Priority Areas 1 and 2) (Department of Health & Ageing, 2009).However, themismatch between the expectations outlined in policy and the readiness ofcurrentlyavailableservicestoadoptthisapproachmakesamoredetailedevaluationofthementalhealthpolicyframeworkveryimportant.

3.Methods

Inordertoundertakethepolicyanalysisathreestepprocesswasundertakenasfollows.

3.1.Identifyandcollectpolicydocuments

Purposiveandsnowballingsamplingtechniqueswereusedto:

I. Identify key Australian Commonwealth disability legislation and policy documents.Documents were found via searches of the Australian Commonwealth Department ofSocial Services, and National Disability Insurance Scheme and additional documentsidentifiedbyprojectpartnerinvestigators.

II. IdentifybroadstrategicAustralianCommonwealthandState/Territorymentalhealthandhealth legislation and policy documents withmention of mental health (see Table 3).Documentswere found via searches of Australian Commonwealth and State/TerritoryDepartment of Health websites, and additional policy documents were identified byprojectpartnerinvestigators.

Broadstrategicpolicydocumentscameinmanyguiseswithsomedocumentsidentifiedwitha ‘policy’ label,while otherswere called ‘frameworks’, ‘strategic plans’ or ‘strategies’.Weincludeddocumentswithalltheselabelsthatwereaccessibleonkeygovernmentwebsites.

Wetookinclusiononthewebsiteasendorsementbytherelevantgovernmentdepartment.Inclusioncriteriaformentalhealthandhealthdocuments:

Availableonline;

Mentalhealthpolicydocuments;

Generalhealthpolicydocumentswhichincludedmentalhealth;

Spanningyears2005‐2015.

Intheinterestoffocusingonbroadstrategicpolicydirections,operationalplans,protocolsand guidelines related to implementation at departmental or organisational levels wereexcluded.

AlldocumentsweredownloadedandsavedasPDFs.DetailsofeachdocumentwereenteredintoanExcelspreadsheetgroupedbyjurisdiction.Oncelocated,eachdocumentwas

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searched using the following key words: mental health, mental illness, mental disorder,mentaldisease; intellectualdisability, intellectual impairment, learningdisability, learningdisorder, cognitive impairment, disability; vulnerable populations, special populations,complex needs. The presence or absence of these key words was recorded on thespreadsheet.

3.2.Developananalysisframework

Acodinganalysisframework(seeAppendixB)wasdevelopedtoaddresstheobjectiveandkeyresearchquestionsforAim2.Theanalysisframeworkcombinedelementsfrom:

I. TheWorldHealthOrganization(WHO)Checklist forEvaluatingaMentalHealthPlan(WHO,2007)including:

Processissues–howpolicyisdevelopedandwithwhoseinput;

Operationalissues–timeframes,indicators,targets,activities;

Content issues – coordination and management, financing, legislation/humanrights, organisation of services, promotion, prevention and rehabilitation,medication, advocacy, quality improvement, information, human resourcesdevelopmentandtraining,intra‐andinter‐sectorialcollaboration,feasibility.

II. WaltandGilson’s(1994)PolicyAnalysisFrameworkincorporating1:

Context;

Content;

Process;

Actors(individualsandgroups).

III. Factorsidentifiedbytheprojectpartnerinvestigators.

3.3.Qualitativecontentanalysis

Two team members were involved in the analysis of the policy documents. Each teammember independentlyanalysedonedocumentandthencomparedcodingdecisions.Onlyminordifferenceswere identifiedand theanalysis frameworkwas revised toclarify thesepoints of difference. Subsequentdocumentswere analysedbyoneorother teammemberusing the revised analysis framework. Analysis was an iterative process with minoradjustments to the framework based on specific issues identified during analysis ofparticulardocuments.

1SeeFigure1WaltandGilsonPolicyAnalysisFrameworkpage23

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Analysisfocussedonidentifyingthestrengths/facilitatorsandgaps/barriersineachpolicydocument related to the inclusion of people with intellectual disability in mentalhealth/health policy. Analysis included: the language used to refer to peoplewithmentalillness, strategies for ensuring input of people with intellectual disability, familymembers/carersandserviceproviders inpolicydevelopment,andstrategiesproposedforensuring mental health services were accessible and responsive to the specific needs ofpeoplewithintellectualdisabilityandfamilymembers/carers.Asitbecameevidentthatthemajority ofmental health andhealthpolicydocuments included limited or nomentionofpeoplewithintellectualdisability,particularattentionwaspaidtoomissions‐whatwasnotincluded was determined to be as important at what was included. This review wasconducted in a rapidly changing environment in the disability, mental health and healthsectorswithnewpolicyconstantlyemerging.Thereportrepresents thereforea ‘snapshot’intime.

3.4.Governance

Project group meetings were held regularly during the document finding and analysisphases. The meetings included project partner investigators with a special interest inmental health, health and disability policy. The meetings provided opportunities forpartners to question the policy document inclusion criteria and analysis approaches,contributetotheanalysisframework,andprovideinformationaboutadditionalpoliciestoinclude in analysis. In this way, the project group members acted as a sounding board,checking mechanism, and quality control for the project team. A draft of the report wascirculatedtoprojectgroupmembersandchangesmadebasedonfeedback.

4.Results

Documents gatheredweremapped to develop a representation of the current frameworkfor intellectual disabilitymental health policy as shown in figure 1. Figure 1 provides anoverview of Australian Commonwealth and State/Territory disability and mental healthlegislation and included Commonwealth disability, mental health and health policydocuments. The disability andmental health legislation and policy documents are framedwithintheinternationalUnitedNationsConventionontheRightsofPeoplewithDisabilitiestowhichAustraliaisasignatory.

Inordertosettheoverallcontextofpolicyforpeoplewithdisabilityandmorespecificallypeoplewithintellectualdisability,analysiswasundertakentoidentifythekeyoverarchingdisabilitypolicysettingsinrelationtothisgroup.

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Figure1RelevantAustralianLegislationandCommonwealthPolicy

UNITED NATIONS CONVENTION ON THE RIGHTS OF PEOPLE WITH DISABILITIES 2006; Ratified by Australia in 2008

DISABILITY LEGISLATION Commonwealth

Disability Services Act, 1986 Disability Discrimination Act, 1992

National Disability Insurance Scheme Act, 2013 State/Territory

Disability Services legislation Anti-discrimination legislation

Guardianship legislation NDIS related legislation

MENTAL HEALTH LEGISLATION Commonwealth

Disability Discrimination Act, 1992

State/Territory Mental Health Acts

Anti-discrimination legislation

HEALTH LEGISLATION Commonwealth

National Health Act, 1953 63 other pieces of legislation

INCLUDED COMMONWEALTH HEALTH DOCUMENTS

COAGNationalHealthReformAgreement,2011

NationalWomen’sHealthPolicy,2010 BuildingontheStrengthofAustralian

Males,2010 TheNationalDrugStrategy,2010‐2015 NationalAboriginalandTorresStrait

IslanderHealthPlan,2013‐2023

INCLUDED COMMONWEALTH DISABILITY DOCUMENTS

ShutOutReport,2009 NationalDisabilityAgreement,2009 NationalDisabilityStrategy,2010‐2020 ProductivityCommissionReport:

DisabilityCareandSupport,2011 NationalDisabilityInsuranceScheme,

2013

COMMONWEALTH MENTAL HEALTH POLICY NationalMentalHealthPolicy,2008 MentalHealthStatementofRightsand

Responsibilities1991(updated2012)

INCLUDED MENTAL HEALTH DOCUMENTS LiFEFrameworkofSuicidePreventionin

Australia,2007 FrameworkforImplementationofNational

MentalHealthPlan2003‐2008inMulticulturalAustralia

COAGNationalActionPlanonMentalHealth2006‐2011

4thNationalMentalHealthPlan,2009‐2014 e‐MentalHealthStrategyforAustralia,2012 NationalAboriginalandTorresStraitIslander

SuicidePreventionStrategy,2013 NationalReviewofMentalHealthProgramsand

Services,2015 COAGRoadmapforNationalMentalHealth

Reform,2012‐2022

4.1Disabilitylegislationandpolicy

Over the past six years the fragmentation and lack of access to disability supportsthroughoutAustraliahavebeenhighlighted in twokeyreports,ShutOut:TheexperienceofpeoplewithdisabilitiesandtheirfamiliesinAustralia,2009and theProductivityCommissionReport:DisabilityCareandSupport,2011.Resulting from these reports were theNationalDisabilityAgreement (NDA), theNationalDisabilityStrategy (NDS) and,most recently, theNationalDisabilityInsuranceScheme (NDIS).Together, theNDA,NDSandNDIShave led tosignificantchangesinthewaydisabilityservicesandsupportsareplannedanddeliveredtopeoplewithdisability including thosewith intellectualdisabilityandmental illness.Thesechanges are embedded in legislation and policy at Commonwealth and State/Territorylevels.

4.1.1DisabilityLegislation ThreekeypiecesofCommonwealth legislationunderpindisabilitypolicyandpracticeatanationallevelandwithintheStatesandTerritories.TheDisabilityServicesAct,1986 (DSA) aims to assist persons with disabilities to receiveservices necessary to enable them to work towards full participation as members of thecommunity.TheActisfocussedonde‐institutionalisingsegregatedservices,increasingtherange of service options available to peoplewith disability, and fostering the inclusion ofpeoplewithdisability inwidercommunity life.TwelvedisabilityservicestandardsoutlinetheGovernment’sexpectationsaroundservicequalityandoutcomes.Subsequentto,andinlinewith,theCommonwealthAct,allStatesandTerritoriespasseddisabilitylegislation.The DisabilityDiscriminationAct 1992 (DDA) provides protection against discriminationbasedondisability andpromotes equal opportunity andaccess forpeoplewithdisability.TheDDAcoversdiscriminationinthefollowingareasoflife:employment,education,accesstopremisesusedbythepublic,provisionofgoods,servicesandfacilities,accommodation,purchase of land, activities of clubs and associations, sport, and administration ofCommonwealth Government laws and programs. Subsequent to, and in line with, theCommonwealthAct,allStatesandTerritoriespassedanti‐discriminationlegislation.The NationalDisability Insurance SchemeAct, 2013 (NDIS) sets out the principles underwhichtheNDISwilloperateincluding:howapersonbecomesanNDISparticipant,planning,fundingofreasonableandnecessarysupports,registrationofproviders,thegovernanceoftheNationalDisabilityInsuranceAgency,andtheprocessesforinternalandexternalreviewofdecisionsmadeundertheAct.TheNDIS isan insurancemodelproviding individualisedsupportforeligiblepeoplewithpermanentandsignificantdisability.

4.1.2DisabilityPolicy

Five key Commonwealth disability reports and policy documentswere analysedwith theobjective of identifying the overarching context of current policy settings in relation todisability.Analysisspecificallyaddressedtheframingof intellectualdisabilitywithinthesedocuments.

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While none are specific to people with intellectual disability, all documents includereferencetothisgroup. Additionally,thedocumentswerescannedforattentiontomentalhealthgenerallyand forattention tomental ill‐healthofpeoplewith intellectualdisabilityspecifically.Overall,thesekeydocumentsincludedmentionofbothpeoplewithintellectualdisabilityandpeoplewithmental ill‐health.Therewasonly limitedattentiongiven to thementalill‐healthofpeoplewithintellectualdisability.

I. ShutOut:Theexperienceofpeoplewithdisabilitiesandtheir families inAustralia,2009.

TheShutOutreportwaspreparedattherequestoftheCommonwealthgovernmentbytheNationalPeoplewithDisabilitiesandCarerCounciltoinformthedevelopmentofaNationalDisabilityStrategy. In compiling the report, the authors held forums in metropolitan andregional areas across Australia attended by more than 2,500 people. The authors alsoreceivedmore than750written submissions from individuals, organisations, peak bodiesandgovernment,ofwhich9%identifiedintellectualdisabilityasagroupofconcern.

ThemainmessagescontainedintheShutOutreportrelatetothestrugglesexperiencedbypeoplewithdisabilityandtheircarerstoaccesstheservicesandsupportstheyneeded.Thereport authors identified the need for access barriers to be removed so people withdisabilityandtheircarerscouldleadthelivestheydesired.

There is littlementionofmental illness in the reportalthoughanumberofmentalhealthorganisations were listed as contributors. On page 33, it is noted that there was “littleawarenessof thementalhealthneedsofpeoplewith intellectualdisability,particularlyastheyage”.Addressingmentalill‐healthofpeoplewithintellectualdisabilityisdescribedas“apressingissueforfutureplanning”.ThisreportinformedthedevelopmentoftheNationalDisabilityStrategy–atenyearplanfordisabilityservicesinAustraliadescribedbelow.

II. NationalDisabilityAgreement(NDA),2009.

The NDA delineates clear roles and responsibilities for Commonwealth and State andTerritorygovernmentsaroundtheprovisionofservicestopeoplewithdisability.TheNDAprovides, for the first time in Australia, nationally agreed objectives and outcomes forpeople with disability, families and carers to have an “enhanced quality of life andparticipateasvaluedmembersofthecommunity”(p.3).

Under the agreement, the Commonwealth have responsibility for income support andemploymentservicesandtheStates/Territoriesforaccommodation,respiteandcommunitysupport services. A set of performance indicators and benchmarks are identified to guideimplementationoftheagreement.TheNDAshouldbereadinconjunctionwiththeNationalHealthReformAgreement. The NDA remains in place until the full roll out of the NDISscheduledfor2020.

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III. NationalDisabilityStrategy(NDS),2010‐2020

InformedbytheShutOutreport,theaimoftheNDSistoensurethatpeoplewithdisabilityhaveopportunitiestofullyparticipateintheeconomic,socialandculturallifeofthenation.TheNDS outlines a cohesive approach, in line with the UNCRPD, across governments inmainstreamanddisability specific areas of public policy. To achieve a cohesive approach,thestrategyidentifiesthatcoordinatedplanningisrequiredacrossallportfoliosandareasofgovernment.TheNDSadoptsthesocialmodelofdisabilitywhereby“attitudes,structuresandpracticesaredisablingandcanpreventpeople fromenjoyingeconomicparticipation”(p.16).

TheNDS covers six policy areas: inclusive and accessible communities; rights protection,justice and legislation; economic security; personal and community support; learning andskills; health and wellbeing. The NDS addresses the interests of people with a range ofimpairmentsincludingintellectualdisabilityandpsychosocialdisability.Thespecificneedsofpeoplewith intellectualdisabilityarementioned in thesectiononhealthandwellbeingwithastatementthattheyareadisadvantagedgroupwithcomparativelypoorhealthstatus.For example, peoplewith intellectual disabilitymay have a 20 year lower life expectancythanthegeneralpopulation.TheNDShighlightstheneedtoincludeissuesspecifictopeoplewith disabilities, including mental ill‐health, within key public health strategies withparticular reference to the 4th NationalMental Health Plan. In relation to people withintellectualdisability,onpage62of theNDS it is stated: “Psychiatricdisordersareamongtheconditionsthatarefrequentlynotwelldiagnosedormanagedinpeoplewithintellectualdisability”.

People with intellectual disability are also discussed in the section on rights protection,justice and legislation citing evidence that peoplewith intellectual disability are 10 timesmore likely to have experienced abuse than non‐disabled people, and people withintellectual disability are overrepresented both as victims and offenders in the criminaljusticesystem.

Implementationplans,governancestructuresincludingannualreportstoCOAG,stakeholderengagement through advisory groups, and monitoring and reporting mechanisms areincludedintheNDStoensureaccountabilityacrosseachofthesixpolicyareas.

IV. ProductivityCommissionReport:DisabilityCareandSupport,2011

Following on from the issues raised in theShutOut report and implementation problemsrelatedtoalackofresourcingoftheNDS,theAustraliangovernmentaskedtheProductivityCommissiontoconductan inquiry into theneedforandfeasibilityofa longtermnationaldisabilitycareandsupportscheme.TheCommissionheard23daysoftestimonyinformalhearings and received nearly 1,100 submissions from people with disability, familymembers/carers,serviceproviders,governmentandbusiness.TheCommissionproposedanational disability insurance scheme whereby all Australians with significant andpermanent disability would get long term care and support. The Commission advocatedthreetiersofsupportwithTier3providingthemostintensivesupportfor410,000people;Tier 2 providing information website referral services and community engagement for 4millionpeoplewithdisabilityand800,000carers,andTier1encapsulatingsocial

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participationfortheentireAustralianpopulation.

Thereportidentifiesandvalidatestheneedforbothpeoplewithintellectualdisabilityandpeople with mental illness to be included in the proposed national disability insurancescheme. Both groups are discussed throughout the report. The report recommended thatthere should be “full coverage” (p. 62, Vol 1), for people with intellectual disability andcoverageforcommunity(asdistinctfromspecialistmentalhealth)supportsforpeoplewithmental illness(p.188,Vol1).Thereportalso identifiedthatsomepeoplewithintellectualdisabilityhavemental ill‐healthwithspecificreferencetotheNSWCouncil forIntellectualDisabilitysubmissionthatstatedtherewasa“lackofexpertiseinthementalhealthsectorindealingwithpeoplewithintellectualdisabilitywhoalsohadmentalillness”(p.190‐191,Vol1).

V. NationalDisabilityInsuranceScheme,2013

ThereleaseoftheProductivityCommission’sreportwasfollowedbyanationalgrassrootscampaign ‘Every Australian Counts’ that mobilised 150,000 people to advocate for theadoptionoftherecommendationsofthereport.TheCommonwealthgovernmentlegislatedtointroducetheNationalDisabilityInsuranceScheme(NDIS)commencing1July,2013.Thescheme was initially introduced in seven trial sites involving 19,817 participants. It isanticipatedthatwhentheschemeisfullyoperationalin2020,itwillprovidefundedsupportpackagesto460,000individualTier3participants.UndertheNDIS,everyAustralianbornwithoracquiringadisabilitybeforetheageof65andwhose disability is permanent and significantly affects their functional capacity will becovered. The NDIS includes people with intellectual, physical, sensory and psychosocialdisability.AccordingtotheNDISwebsite, theschemeheraldsanentirelynewapproachtodisabilityservicesthat:

isbuiltaroundtheneedsandthepotentialoftheindividual;

seestheindividualasalife‐longinvestment,ratherthanayear‐to‐yearunitofcost;

replacesthewelfaremodelofdisabilityserviceswithaninsurancemodel.

The2014‐2015annualreportofthebodythatadministerstheNDIS,theNationalDisabilityInsurance Agency (NDIA), identified that 25% of current NDIS participants had anintellectual disability and 6% a psychosocial disability. As only the primary disability isreported therearenodatashowing thepercentagesofparticipantswithdualdiagnosisofintellectual andpsychosocialdisability.TheMentalHealthCoordinatingCouncil reportontheexperiencesofpeoplewithpsychosocialdisabilityintheHunter,NewSouthWalesNDIStrial site identified 1,090 NDIS participants with a primary diagnosis of psychosocialdisability who also had an approved plan (Mental Health Coordinating Council, 2015).Within the NSW trial site context the large residential centres of Morisset, Stockton andKanangracurrentlyaccommodate662peoplewithcomplexsupportneeds includingthosewith intellectual disability and mental illness. The MHCC report highlights that therelocation of these people to community settings will require specific advocacy andsupporteddecisionmaking(MentalHealthCoordinatingCouncil,2015).In order to ensure input fromNDIS users, familymembers, professionals, academics andadvocates,theNDIAsetupanumberofreferencegroupsaroundspecificissues.Thegroups

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include an Intellectual Disability Reference Group and a Mental Health Sector ReferenceGroup.TheIntellectualDisabilityReferenceGroupistaskedwithadvisingon(amongothermatters): equity of access to the NDIS, a definition of intellectual disability, and decisionmakingforpeoplewithcompleximpairment(NDIAAnnualReport2014‐2015).TheMentalHealth Sector Reference Group has direct links to the National Mental Health ConsumerForum. The Mental Health Sector Reference Group is tasked with advising on theprogressiveintegrationofpsychosocialdisabilityintotheNDISandeffortstoreconcileoneofthekeyeligibilitycriteriaoftheNDIS‐permanentdisability‐withthefocusinthementalhealthsectoronrecovery(NDIAAnnualReport2014‐2015).Oneofmany challenges facedby theNDIA is to ensure that health andothermainstreamservicesfulfiltheiruniversalserviceobligationstopeoplewithdisability.Tothisend,asetofprinciplestodeterminethefuturefundinganddeliveryresponsibilitiesof theNDISandotherservicesystemswasreleased in2013andrevisedat theendof2015.UnderpinningtheseprinciplesistherightofpeoplewithdisabilitiestoaccesstheservicesavailabletoallAustralians. Mental health was identified as one of 11 service systems included in theprinciples. Under the principles, the health system maintains responsibility for clinicalmentalhealthservicesandresidentialin‐patienttreatmentorrehabilitation.Thehealthandcommunityservicessystemhasresponsibility forsupportsrelatingtoco‐morbiditywithamentalhealthissuewheretheco‐morbidityisclearlytheresponsibilityofthatsystem(e.g.,treatment foradrugand/oralcohol issue).TheNDIS is identifiedashavingresponsibilityfor non‐clinical supports focussed on a person’s functional ability that will enable thepersonwithmentalillnesstoparticipateincommunity,socialandeconomiclife(Principlesto Determine the Responsibilities of the NDIS and Other Service Systems, 2013, revisedNovember2015).

Together,thesefivekeynationaldisabilitydocumentsprovideacomprehensiveframeworkofthecurrentlandscapeinAustraliainrelationtopeoplewithdisability.TheNDISclearlyapplies to people with intellectual disability and those with mental illness andacknowledgesdualdiagnosis.

4.2MentalHealthandHealthlegislationandpolicy

4.2.1.Mentalhealthlegislation

Inrecognitionof the importanceof legislation topolicydevelopmentand implementation,mental health legislation for all States/Territory was accessed (see Table 1 for a list oflegislationbyjurisdiction).Thelegislationinalljurisdictionsusesaconsistentdefinitionofmentalillnessinlinewiththatprovidedearlierinthisreport(p.9).

Jurisdictionallegislationtypicallyincludesprovisionsrelatedtotheassessment,treatment,care,rehabilitationandprotectionofpeoplewithmentalillness.Allthelegislationreferstotheneedfortreatmentpracticestobetheleastrestrictiveandinformedbyhumanrights

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principles. All jurisdictions include information about monitoring bodies such as reviewtribunals, community or official visitors, and chief psychiatrist roles. Voluntary andinvoluntary treatment in both in‐patient and community settings is covered by mostjurisdictions(theQueenslandandVictorianlegislationonlycoverinvoluntarytreatment).

Alljurisdictions’legislationincludedmentionofpeoplewithintellectualdisabilitywhomayalso have amental illness. TheQueensland, Victorian, Tasmanian andWesternAustralianlegislationusedtheterm‘intellectualdisability’,theamendedNSWlegislationusedtheterm‘intellectualdisabilityordevelopmentaldisability’,theSouthAustralianlegislationusedtheterm ‘developmental disability of the mind’, the ACT legislation used the term ‘mentalimpairment’ and the Northern Territory legislation referred to ‘complex cognitiveimpairment’definedas thosewhoare ‘intellectually impaired,neurologically impairedorhave an acquired brain injury and behavioural disturbance (aggressive or irresponsiblebehaviour)’.

In all legislation, intellectual disability and associated terms are included in the list ofconditions that, of themselves, should not be taken to indicate a mental illness. Othermentionsof intellectualdisabilityandassociated termsrelate to forensicpartsof theActsincludingfitnesstopleadandtheneedforadditionalsupport.

Table1MentalHealthLegislation

Jurisdiction

Act

AustralianCapitalTerritory(ACT)

MentalHealth(Treatment&Care)Act1994(amended2013)

NewSouthWales(NSW) MentalHealthAct2007No.8(amended31/8/15)

MentalHealthCommissionAct2012

NorthernTerritory MentalHealthandRelatedServicesAct2014

Queensland MentalHealthAct2000(currentasat1July2014)

SouthAustralia MentalHealthAct2009

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Tasmania MentalHealthAct2013

Victoria MentalHealthAct2014

WesternAustralia MentalHealthAct1996(versionasat3/11/14)

4.2.2Mentalhealthandhealthpolicy

Sixty one mental health and health policy and associated documents met the inclusioncriteria.Table2providesdetailsofthe11keyoverarchingmentalhealthpolicydocument/sidentifiedfortheCommonwealthandeachState/Territory.

Table2KeyMentalHealthPolicyDocuments

Jurisdiction Keymentalhealthpolicydocuments

(N=11)

Federal NationalMentalHealthPolicy,2008;

FourthNationalMentalHealthPlan:AnAgendaforCollaborativeGovernmentinMentalHealth,2009‐2014;

MentalHealthStatementofRightsandResponsibilities,2012

RoadmapforNationalMentalHealthReform,2012‐2022(COAG).

ACT BuildingaStrongFoundation:Aframeworkforpromotingmentalhealthandwell‐beingintheACT,2009‐2014.

NSW NSW:ANewDirectionforMentalHealth,2006‐2011.

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NorthernTerritory MissingasMentalHealthpolicydocumentwasnotavailableonline.

Queensland QueenslandPlanforMentalHealth,2007‐2017.

SouthAustralia SouthAustralia’sMentalHealthandWellbeingPolicy,2010‐2015.

Tasmania TasmaniaMentalHealthStrategicPlan,2006‐2011–Partnerstowardsrecovery.

Victoria BecauseMentalHealthMatters:Victorianmentalhealthreformstrategy,2009‐2019.

WesternAustralia MentalHealth2020:Makingitpersonalandeverybody’sbusiness:ReformingWesternAustralia’smentalhealthsystem,2010‐2020.

Fifty other associated policy documents were identified. Table 3 (pages 24‐26) providesinformationonalldocumentsincludedintheanalysis.Insummary:

37ofthe61werementalhealthspecificpolicyandrelateddocuments.Theother24weregeneralhealthpolicyand relateddocuments that includedmentionofmentalhealth;

19 of the 61 documents included a mention of people with ‘intellectual disability’and/or associated terms; 15 of the 19 mentions were in mental health specificdocuments;

46 documents used the broad term ‘disability’ with 16 of these documents alsoincludingspecificmentionofpeoplewithintellectualdisability.Theterm‘disability’wasmostfrequentlyusedassociatedwiththedisablingeffectsof livingwithmentalill‐healthorchronicdisease;

30documentsusedtheterm‘complexneeds’associatedwitheithermentalill‐healthor chronic health conditions. None used it specifically in relation to people withintellectualdisability;

2 documents made single references to ‘special populations’. Neither documentprovidedadefinition forwhowas includedunder this term.Both thesedocumentsmentioned intellectual disability although not related to the ‘special population’references;

2 documents included mention of ‘vulnerable populations’ – 1 in relation toAboriginalandTorresStraitIslanderpeopleswithdisabilityandtheotherinrelationtopeoplewithchronicdisease.

Table3IncludedMentalHealthandHealthPolicyDocumentsDocumentID

POLICY/DOCUMENTTITLE(N=61) Year/s MentionofID

C COMMONWEALTH(n=15)

MENTALHEALTHDOCUMENTS

C1 FrameworkfortheimplementationoftheNationalMentalHealthPlaninMulticulturalAustralia 2003–2008 YesC2 CouncilofAustralianGovernments(COAG)NationalActionPlanonMentalHealth 2006‐2011 YesC3 TheLivingIsForEveryone(LIFE)Framework(nationalframeworkforsuicideprevention) 2007 NoC4 NationalMentalHealthPolicy 2008 NoC5 FourthNationalMentalHealthPlan:AnAgendaforCollaborativeGovernmentinMentalHealth 2009‐2014 YesC6 E‐mentalhealthstrategyforAustralia 2012 NoC7 COAGRoadmapforNationalMentalHealthReform 2012‐2022 YesC8 MentalHealthStatementofRightsandResponsibilities1991 Updated2012 YesC9 NationalAboriginalandTorresStraitIslanderSuicidePreventionStrategy 2013 NoC10 NationalReviewofMentalHealthProgrammesandServices 2015 Yes HEALTHDOCUMENTS(includedmentalhealth) C11 BuildingontheStrengthsofAustralianMales 2010 NoC12 NationalWomen’sHealthPolicy 2010 NoC13 TheNationalDrugStrategy 2010‐2015 NoC14 COAGNationalHealthReformAgreement 2011 NoC15 NationalAboriginalandTorresStraitIslanderHealthPlan:ClosingtheGap 2013‐2023 YesNSW NEWSOUTHWALES(NSW)(n =10)

MENTALHEALTHDOCUMENTS NSW1 NSWAboriginalMentalHealthandWellBeingPolicy 2006‐2010 NoNSW2 MulticulturalMentalHealthPlan 2008‐2012 YesNSW3 SafeStartStrategicPolicy 2009 NoNSW4 NSWSuicidePreventionStrategy 2010‐2015 YesNSW5 NSWSchool‐LinkStrategyandActionPlan 2014‐2017 NoNSW6 NSWLivingWell,AStrategicPlanforMentalHealthinNSW 2014‐2024 Yes

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HEALTHDOCUMENTS(includedmentalhealth) NSW7 Women’sHealthPlan 2009‐2011 YesNSW8 Men’sHealthPlan 2009‐2012 NoNSW9 YouthHealthPolicy:HealthyBodies,HealthyMinds,VibrantFutures 2011‐2016 YesNSW10 NSWAboriginalHealthPlan 2013‐2023 NoVIC VICTORIA(VIC)(n=9) MENTALHEALTHDOCUMENTS VIC1 Victorianstrategyforsafetyandqualityinpublicmentalhealthservices 2004‐2008 NoVIC2 Caringtogether:AnactionplanforcarerinvolvementinVictorianpublicmentalhealthservices 2006 NoVIC3 Nextsteps:Victoria'ssuicidepreventionforwardactionplan 2006 NoVIC4 CulturaldiversityplanforVictoria'sspecialistmentalhealthservices 2006‐2010 NoVIC5 Planningframeworkforpublicruralmentalhealthservices 2007 NoVIC6 Shapingthefuture:TheVictorianmentalhealthworkforcestrategyFinalreport 2009 NoVIC7 BecauseMentalHealthMatters–VictorianMentalHealthReformStrategy 2009‐2019 Yes HEALTHDOCUMENTS(includedmentalhealth) VIC8 VictorianHealthPrioritiesFramework:MetropolitanHealthPlan 2012‐2022 NoVIC9 KoolinBalit:VictorianGovernmentStrategicDirectionsforAboriginalHealth 2012‐2022 YesQSLD QUEENSLAND(QSLD)(n=5) MENTALHEALTHDOCUMENTS QSLD1 TheQueenslandGovernmentSuicidePreventionStrategy 2003‐2008 NoQSLD2 QueenslandPlanforMentalHealth 2007‐2017 YesQSLD3 ImprovingMentalHealthandWellbeing.QueenslandMentalHealth,DrugandAlcohol.StrategicPlan 2014‐2019 Yes HEALTHDOCUMENTS(includedmentalhealth) QSLD4 MakingTracksTowardsClosingtheGapinHealthOutcomesforIndigenousQueenslandersby2033:Policyand

AccountabilityFramework2010 No

QSLD5 QueenslandYouthStrategy‐ConnectingYoungQueenslanders 2013 NoWA WESTERNAUSTRALIA(WA)(n=5) MENTALHEALTHDOCUMENTS WA1 WASuicidePreventionStrategy 2009–2013 NoWA2 MentalHealth2020:MakingitPersonalandEverybody’sBusiness 2010‐2020 NoWA3 ConsultationDraft:TheWAMentalHealth,AlcoholandOtherDrugServicesPlan 2015‐2025 Yes

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HEALTHDOCUMENTS(includedmentalhealth) WA4 WAWomen’sHealthStrategy 2013‐2017 NoWA5 WAAboriginalHealthandWellbeingFramework 2015‐2030 NoSA SOUTHAUSTRALIA(SA)(n=7) MENTALHEALTHDOCUMENTS SA1 SA’sMentalHealthandWellbeingPolicy 2010‐2015 NoSA2 SASuicidePreventionStrategy 2012‐2016 No HEALTHDOCUMENTS(includedmentalhealth) SA3 SA’sHealthCarePlan 2007‐2016 NoSA4 SAWomen’sHealthActionPlan 2010‐2011 NoSA5 TheAboriginalHealthCarePlan 2010‐2016 NoSA6 HealthPolicyforOlderPeople 2010‐2016 NoSA7 SAAlcoholandotherDrugstrategy 2011‐2016 NoTAS TASMANIA(n=4) MENTALHEALTHDOCUMENTS TAS1 MentalHealthStrategicPlan 2006‐2011 NoTAS2 BuildingtheFoundationsforMentalHealthandWellbeing:Astrategicframeworkandactionplanfor

implementingpromotion,preventionandearlyintervention(PPEI)approachesinTasmania2009 Yes

TAS3 Tasmania’sSuicidePreventionStrategy:Astrategicframeworkandactionplan 2010‐2014 No HEALTHDOCUMENTS(includedmentalhealth) TAS4 Alcohol,TobaccoandOtherDrugServices:Afiveyearplan 2008‐13 NoNT NORTHERNTERRITORY(NT)(n=2) MENTALHEALTHDOCUMENTS NT1 NTSuicidePreventionStrategicActionPlan 2014‐2018 No HEALTHDOCUMENTS(includedmentalhealth) NT2 NTHealthStrategicPlan 2014‐2017 NoACT AUSTRALIANCAPITALTERRITORY(ACT)(n=4) MENTALHEALTHDOCUMENTS ACT1 BuildingaStrongFoundation:AFrameworkforPromotingMentalHealthandWell‐beingintheACT 2009‐2014 No

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ACT2 Managingtheriskofsuicide:Asuicidepreventionstrategy 2009‐2014 Yes HEALTHDOCUMENTS(includedmentalhealth) ACT3 Improvingwomen’saccesstohealthcareservicesandinformation 2010‐2015 NoACT4 ACTPrimaryHealthCareStrategy 2011‐2014 No

4.3Applyingthepolicyanalysisframework

ThemodelofhealthpolicyanalysisdevelopedbyWalt andGilson (1994) takes intoaccount the context, actors, process and content involved in policy development.AlongwithmatchingelementsfromtheWHOChecklistforEvaluatingaMentalHealthPlan,theWaltandGilsonmodelwasusedtoguidethisanalysisofmentalhealthandhealth policy in Australia. Figure 2 provides a diagrammatic representation ofWaltandGilson’sanalysismodel.

Context

Content Process

Figure2Modelforhealthpolicyanalysis(fromWaltandGilson,1994,p.354).

4.3.1Context

Thecontext inwhichpolicyisdevelopedandanalysedinvolvesamacroapproachtoidentify the contextual factors underpinning governmental policy decisions. In theearly part of the twentieth century, Australian mental health policy and serviceprovision was focussed on specialist health care largely provided in psychiatrichospitals.Communityservicesforpeoplewithmentalillnesswerelimitedandsocietalattitudeswerebestcharacterisedas“outofsightoutofmind”.

From the 1970s onwards a shift occurred such that community‐based careincreasinglybecamethepreferredoption(Rosen,2006).Ittookmanyyearshowever

Actors asindividuals

asmembersofgroups

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forpublicfundingtoshiftfromhospitaltocommunitywitharesultinglackofsupportfor people with mental illness living in the community (Rosen, 2006; Whiteford &Buckingham, 2005). Consumer and advocacy groups along with mental healthproviders led a sustained campaign to shift community and political attitudes tocommunitysupportforpeoplewithmentalill‐health(Rosen,2006).Themostrecentmentalhealthpolicydocuments(2005‐2015)reportedonherereflect thischangeincontext such that the focus is onprevention, early interventionand recoverywithinthe community. A concurrent shift has occurred in the disability policy and serviceprovision context with a focus on inclusion, early intervention and person‐centredsupportwithinthecommunity(COAGNationalDisabilityStrategy,2011).

Thisanalysisofthementalhealthandhealthpolicydocumentswasfocussedonhowpeoplewith intellectual disabilitywere represented in and alignedwith the overallcontextofindividualpolicydocuments.Therewasnoovertalignmentbetweenmentalhealth and intellectual disability contexts.Mental health policy documents reflectedhumanrightsprincipleshoweveronlythreedocuments(C8,NSW6,WA2),specificallymentioned the UNCRPD despite the convention’s inclusion of people with mentalillness in Article 1: “People with disabilities include those who have long‐termphysical, mental, intellectual or sensory impairments which in interaction withvariousbarriersmayhindertheirfullandeffectiveparticipationinsocietyonanequalbasiswithothers”(UNCRPDOptionalProtocolp.,5).

4.3.2Actors/Stakeholders

In keeping with the Actor component of Walt and Gilson’s model, Colbatch (2009)suggestedafocusonstakeholders’inputintopolicycontentbyapplyingthefollowingquestionsaboutpolicydevelopment:

Whowrotethepolicy?

Whoinformedwhatwaswritteninthepolicy?

Whoisthepolicywrittenfor?

Policy development involves a range of stakeholders2with a vested interest in thepolicy and its implementation. Government ministers, bureaucrats, interest groups,consumers,academics,serviceprovidersandprofessionalsandthegeneralpublicallhave an interest in public policy. How these stakeholders are engaged in the policymakingprocess,atwhatpointtheirinvolvementissought,therepresentativenessof

2Thetermstakeholders(ratherthanactors)inusedthroughoutthisreportasitisthecurrenttermusedinAustralianpolicydiscourse.

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thoseconsultedandhoworwhethertheirviewsarereflected intheresultingpolicyareallimportantquestions(Colbatch,2009).

The majority (n= 36) of policy documents (C1, C3, C7, C11, C13, C14, C15, NSW1,NSW2,NSW3,NSW4,NSW6,NSW9,NSW10,VIC1,VIC4,VIC5,VIC7,VIC8,VIC9,QSLD1,QSLD2,QSLD3,WA1,WA2,WA5,SA2,SA4,TAS1,TAS2,TAS3,TAS4,NT1,ACT1,ACT2,ACT3,ACT4)identifiedaconsultationprocessinvolvingstakeholdergroupstoinformthe policy development. Involvement strategies included: appointed stakeholderadvisorygroups,communityconsultationswithindividualsandorganisations,writtensubmissions,expert forums, intergovernmental feedback.Themajorityofdocumentsthatmentionedstakeholder involvement inpolicydevelopmentprovidedonlybroadconsultationinformationwithlimiteddetailaboutthetimeframesforconsultationorthenumbersorrolesofthoseinvolved.

Twenty four documents had no mention of consulting with stakeholders in policyformulation.Inparticular,whileitseemsvitallyimportanttoensuretheinvolvementof consumers, their family members/carers and advocates in the policy makingprocess,asthosewhowillbemostaffected,theirexclusionwasnotable.Noneoftheanalysed mental health and health policy documents mentioned the inclusion ofpeoplewith intellectualdisability, their familymembers/carersandthosewhoworkwiththemasamongthestakeholdersconsulted.

4.3.3Process

The process of making policy describes how policy agendas are set, developed andimplemented. Mental health is one area of policy that has been approached at theCommonwealth and State/Territory levels. A series of national documents agreeduponbyallCommonwealthandState/TerritoryMinistersforHealthviatheCouncilofAustralian Governments (COAG) have informed mental health policy and practicewithineach jurisdiction(seeFigure1,p15).TheCouncilofAustralianGovernments(COAG)NationalActionPlanonMentalHealth,2006‐2011(C2p.i),identifiedthat:

“…Australian leaders recognised that mental health is a major problem for theAustraliancommunityandcommittedtoreformthementalhealthsysteminAustralia.TheCouncilofAustralianGovernments (COAG)hasagreedtoaNationalActionPlanon Mental Health. The Plan provides a strategic framework that emphasisescoordination and collaboration between governments, private and non‐governmentproviders in order to deliver a more seamless and connected care system, so thatpeoplewithmentalillnessareabletoparticipateinthecommunity”.

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PriortotheNationalActionPlan,the1991(updatedin2012)MentalHealthStatementofRightsandResponsibilities(C8)providesanoverarchingframeworktoguidepolicyandpracticeandinformconsumersandfamilies/carers.TheCommonwealthandeachof the State/Territory mental health policy documents reflect the Mental HealthStatement of Rights and Responsibilities and the COAG National Action Plan.Consistentwiththesedocuments,mentalhealthpolicyaimstoimprove:

mental health and facilitate recovery from illness through a greater focus onpromotion,preventionandearlyintervention;

access to mental health services including more stable accommodation andsupport,andmeaningfulparticipation inrecreational, social,employmentandotheractivitiesinthecommunity;

the care system through a focus on better coordinated care and buildingworkforcecapacity.

Giventhe focusonperson‐centredandrights‐basedapproaches, theextent towhichmentalhealthpolicyalignswiththevalues,principlesandobjectivesspecifiedintheUNCRPDwasinvestigated.Asmentionedpreviously,onlythreedocumentsreferredtothe UNCRPD: the Commonwealth Mental Health Statement of Rights andResponsibilities2012 (C8),NSWLivingWell:AstrategicplanformentalhealthservicesinNSW,2014‐2024 (NSW6)3and theWestern AustralianMentalHealth2020 (WA2).Nonetheless, the tone and language used across documents was consistent with arights‐based approach. For example, the UNCRPD referred to dignity, autonomy,independence,choice,activeinvolvementindecision‐making,accessibilityofservicesand information, importance of the person’s family, participation and inclusion, andequality. The language used in the mental health policy documents was couchedaround: respect for the person, equity, citizenship, importance of family and carers,reductionofstigma,participationandinclusion,andaccessibility.TheNationalMentalHealthPolicy,2008(C4p.,19)stated:

“PeoplewithmentalhealthproblemsandmentalillnesshavethesamerightsasotherAustralianstofullsocial,politicalandeconomicparticipationintheircommunities.”

Fourdocumentsreferredtootherinternationalrights’chartersincluding:

UNUniversalDeclarationofHumanRights,1948(C5)

UNConventionontheRightsoftheChild,1989(C8)

UNDeclarationontheRightsofIndigenousPeople,2008(C14)

InternationalCovenantonEconomic,SocialandCulturalRights,1976(SA1).

3NSW10isdescribedinmoredetailonpages34‐35,37‐38.

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4.3.4Content

Contentreferstothetechnicalfeaturesofthepolicy–whatisincluded,howthepolicyshouldbeoperationalisedandorganisationalissues(Walt&Gilson,1994).Australianmental health and health policy document content strengths and weaknesses inrelation to people with intellectual disability are a focus of this report. Theweaknessesaredescribedinrelationtothelackofinclusionofmentionofpeoplewithintellectual disability. Given the identified lack of representation of people withintellectual disability in these documents, the strengths relate to generic policystrengthsthatmaybeappliedtoincludepeoplewithintellectualdisability.

Mentalhealthpolicydocuments’contentweaknesses

In analysing the mental health and health policy documents we focussed on fivecontentrelatedquestionsregardingpeoplewithintellectualdisability:

I. To what extent and in what ways is intellectual disability included in thecontent?

II. Are there strategies for addressing the mental health needs of people withintellectualdisability?

III. To what extent are the strategies linked to clear, measureable actions ortargets?

IV. Whatistheplanfortranslatingpolicyintoaccessibleservicesforpeoplewithintellectualdisability?

V. Whatismissingornotclearinthispolicyinrelationtopeoplewithintellectualdisabilitywithmentalill‐health?

I. Inclusionofintellectualdisability

Nineteen of the 61 documents included somemention of intellectual disability (seeTable3).Peoplewith intellectualdisabilitywerementionedas constitutingoneof anumberofhigher risk groups formental illness.Thiswasmost clearly stated in theFourthNationalMentalHealthPlan(C5,p.70):

“People with intellectual disability are at increased risk of experiencing a mentalillness, yet this is often overlooked and access to appropriate treatment for bothdisabilitiesarelimited.”

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In theNationalReviewofMentalHealthProgrammesandServices (C10,p.108Vol1),the need was identified to “explore opportunities for joint care planning betweenmentalhealthandintellectualdisabilityservices….toprovideatruly ‘nowrongdoor’holisticresponsetopeoplewithconcurrentneeds.”

II. Strategies foraddressing thementalhealthneedsofpeoplewith intellectualdisability

Only two documents provided strategies for addressing themental health needs ofpeoplewithintellectualdisability.

The Victorian BecauseMentalHealthMatters reform strategy (VIC7) identifies theneedtobuildthecapacityoftheprimaryhealth,disabilityandmentalhealthservicesto identify, treat, andmanage people with co‐existing problems such as those withintellectualdisability.

TheNSWLivingWell (NSW6) strategicplan formentalhealth servicesmentions theestablishment in 2009 by the NSW Government of a Chair of Intellectual DisabilityMental Health at UNSW Australia. The document identifies a range of projectsundertakenby theChair, Professor JulianTrollor, including e‐learning supports andthedevelopmentoftheAccessibleMentalHealthServicesforPeoplewithanIntellectualDisability: A guide for providers (Department of Developmental DisabilityNeuropsychiatry, 2014) outlining principles and practical strategies to developinclusiveandaccessibleservices.

III. Strategieslinkedtoclear,measureableactionsortargets

The same twodocuments identified strategies for peoplewith intellectual disabilitylinkedtoclearmeasureableactionsortargets.

The Victorian BecauseMentalHealthMatters reform strategy (VIC7) identified theneed for greater proficiency in identifyingmental illness in peoplewith intellectualdisability and once identified, to provide a more integrated response. Therecommended way of achieving this is through designated co‐existing disabilityportfolio roles within adult mental health services. Additional training andsupervisionwererecommendedtoimprovespecialistassessment,treatmentandcareforpeoplewithseverementalillnessandintellectualdisability.

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TheNSWLivingWell (NSW6)strategicplanformentalhealthservices identified fiveactionareasforimprovingaccesstomentalhealthservicesforpeoplewithintellectualdisability:

a) Implementation of the Accessible Mental Health Services for People with anIntellectual Disability: A guide for providers (Department of DevelopmentalDisabilityNeuropsychiatry,2014);

b) Training for all mental health and disability sector staff in recognition,assessment, referral pathways and treatment for people with an intellectualdisabilityandmentalillness;

c) Preparing for the NDIS by developing partnerships between NSW Health,community‐managed and private sector supports for public mental healthservicestoworkwithpeoplewithintellectualdisability;

d) Developingarecovery‐orientedmodelofcareforpublicmentalhealthservicestoworkwithpeoplewithintellectualdisability;

e) Developingaccessible information forpeoplewith intellectualdisability, theirfamiliesandcarersaboutmentalhealthservices.

IV. Planfortranslatingpolicyintoaccessibleservicesforpeoplewithintellectualdisability

Nodocumentmentionedincludingpeoplewithintellectualdisabilityinservicedesign,building their capacity to manage their mental health needs, or designingcommunication strategies to facilitate their involvement and understanding aboutmental health services. Two NSW documents includedmention of issues related toaccessibleservicesforpeoplewithintellectualdisability.

TheNSWLivingWell (NSW6)strategicplanproposestheneedforamoreintegratedapproach between disability and health services. Concerns are also raised in thisdocument about how people with mental illness will be accommodated within theNationalDisabilityInsuranceScheme(NDIS).

Whilenotspecificallyrelatedtomentalhealth,theNSWWomen’sHealthPlan(NSW7)identifiesaneedtodevelopaninformationkitaboutgeneralhealthissuesacrossthelifespan forwomenwith intellectualdisability, their familymembers/carers, clinicaleducationsandorganisationsandhealthservices.

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V. Contentmissingornotclear inrelation topeoplewith intellectualdisabilityandmentalill‐health

With the exception of the Commonwealth, Victorian andNSWdocuments describedabove, there was a lack of awareness of the specific needs and strategies forovercoming barriers for people with intellectual disability to be included inmainstream mental health services. The majority of those documents that madementionofintellectualdisabilityfailedtoprovidestrategiesforaddressingtheservicebarriersexperiencedbythisgroup.

Mentalhealthpolicydocuments’contentstrengths

Weidentifiedfivestrengthscommontotheincludedmentalhealthandhealthpolicydocuments:avalues‐basedapproach,recognitionofdiversity,alife‐courseapproach,focusonworkforcedevelopment,andbuildinginchecksandbalances.

Avalues‐basedapproach

UnderpinningtheaimsandarticulatedacrosstheCommonwealthandState/Territorymental health policy documents is a consistent values‐based approach to mentalhealthinvolvingninekeyprinciples:

a) Promotionofmentalhealth;

b) Preventionofmentalillness;

c) Provisionofearlyintervention;

d) Accesstoappropriatetreatment/servicestoprovidecontinuityandcoordination;

e) Recoveryleadingtoparticipationandinclusioninthecommunity;

f) Person‐centredacrossthelife‐courseviaafocusontheconsumer,carersandfamily;

g) Rights‐basedwitheliminationofstigmaanddiscriminationassociatedwithmentalill‐health;

h) Whole‐of‐governmentapproachestoprovidea‘nowrongdoor’experience;

i) Priorityoncommunity‐basedinterventions.

These values are in keeping with those espoused in disability‐specific policydocumentsdescribedearlierinthisreport(pp.17‐20).

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Recognitionofdiversity

In recognition of the health inequities experienced by people in minority groupswithin Australian society, all Commonwealth and State/Territory policy documentsincludedstatementsabout theneedforadditionalattentiontobepaidtothementalhealthneedsofpeoplesfrom:

AboriginalandTorresStraitIslanderbackgrounds;

Culturallyandlinguisticallydiverse(CALD)backgrounds;

Ruralandremoteareas.

In addition to the mention of these groups in all policy documents, a number ofjurisdictions had separate policy documents that addressed the specific issues for:Aboriginal and Torres Strait Islander peoples (e.g., C9, C15, NSW1, NSW10, VIC9,QSLD4,WA5,SA4)andthosefromCALDbackgrounds(e.g.,C1,NSW2,VIC4).Victoriawas the only jurisdiction to have a specific framework around rural mental healthserviceprovision(VIC5).

Additional groups identified as requiring special consideration in some, but not alldocuments,includedpeople:

withaco‐existingdisability(physical,mental,sensoryorintellectual)

(C3, C7, C8, C9, C10, C11, C12, C13,NSW3,NSW6,NSW9, VIC7,QSLD1,QSLD3, SA4,SA7,WA3,WA4,TAS3,TAS4,ACT2,ACT3);

involvedwiththecriminaljusticesystem

(C8, C9, C11, C13,NSW2,NSW9, VIC3, VIC7,QSLD1,QSLD2, QSLD3, SA4, SA1,WA3,TAS2,TAS3,ACT2);

whoidentifyaslesbian,gay,bisexual,transgenderandintersex(LGBTI)

(C8,C10,C11,C12,C13,NSW3,NSW6,VIC7,QSLD1,QSLD3,WA4,TAS2,TAS3,NT1);

affectedbysocio‐economicdisadvantage

(C3,C4,C7,C8,C11,C13,C15,NSW3,NSW4,NSW9,SA4,WA4,NT1);

withsubstancemisuseproblems

(C1,C7,C8,C9,C10,C15,NSW9,VIC7,QSLD2,QSLD3,WA3);

whoarehomeless

(C4,C8,NSW9,VIC3,VIC7,SA7,NT1)

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whoarewomen

(NSW2,QSLD3,SA2,WA5).

Given the connection between substance misuse and physical andmental health, anumberof specificpolicydocumentswere targetedatdrugandalcohol issues (C13,QSLD3,WA3,SA7,TAS4).Thespecifichealthneedsofwomenareaddressedby fivejurisdictionsviawomen‐specificpolicydocuments(C12,NSW7,WA4,SA4,ACT3).TheCommonwealthandNSWalsohavepoliciesspecificallyrelatedtomen’shealth(C11,NSW8).

Alife‐courseapproach

All policydocumentsused a life‐course frame todiscuss thephysical andemotionalwellbeingofpeopleacrossthelifespan.Similardescriptorswereusedtoseparateoutlifespan categories according to: young children, adolescents/youth, young adults,adults,andolderadults.

NSWwastheonlyjurisdictiontohaveaspecificpolicyaimedataddressingthementalhealthofwomenduringpregnancyand infants in the first twoyearsof life (NSW5).NSW also had a policy related to the mental health of children and young peopleattending school and technical and further education (TAFE) (NSW5). NSW andQueensland had specific policy documents addressing the issues ofadolescents/youths (e.g., NSW9, QSLD5). South Australia had a policy documentrelatedtothehealthrequirementsofolderpeople(SA6).

Given the link between mental illness and suicide, all jurisdictions had suicidepreventionpoliciestargetedacrossthelife‐course(C3,NSW4,VIC3,QSLD1,WA1,SA2,TAS3, NT1, ACT2). Only two of these documents mention people with intellectualdisability (NSW4, ACT2). The NSW document is in relation to the assessment forsuicide risk of people in the criminal justice system including peoplewith cognitiveimpairment who may be at risk of self‐harm. The ACT document identifies youngpeople aged 12‐25 yearswith a developmental or intellectual disability as among agroupatriskofself‐harm.

Focusonworkforcedevelopment

Training and supporting theworkforce engaged inhealth andmental health serviceprovisionwasincludedinthemajorityofdocuments.Workforcedevelopmentcentredon:

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Building the capacity of public, private and non‐governmental organisationsectorstoworkwithpeoplewithmental/healthissues

(C2,C4,C6,C7,C9,C10,C11,C12,C13,C15,NSW1,NSW3,NSW4,NSW5,NSW6,NSW7,NSW8,NSW9,NSW10,VIC1,VIC2,VIC3,VIC5,VIC6,VIC7,VIC8,VIC9,QSLD1,QSLD2,SA2, SA4, SA6, SA7, WA1, WA3, WA4, WA5, TAS1, TAS2, TAS4, NT2, ACT1, ACT3,ACT4);

Buildingaculturallycompetentworkforce

(C1, C6, C8, C9, C10, C15, NSW1, NSW2, NSW5, NSW6, NSW10, VIC4, VIC6, VIC9,QSLD4,SA5,SA6,WA3,NT2);

Recognitionofgeographicworkforceconstraintsespeciallyinruralandremoteareas

(C5,C8,C11,C12,C15,VIC5,VIC6,SA3,SA7,TAS3);

Trainingstafftoworkinrecovery‐orientedways

(C5,C8,NSW6,VIC6,TAS2).

In particular,Victoria identifiedworkforce as a key component of deliveringmentalhealth reforms with the Shaping the future: The Victorianmental healthworkforcestrategy report (VIC6). The report (VIC6, p. 4) identified the need to build the“capacityandcapabilityofthespecialistmentalhealthworkforce”todeliver“flexible,relevantandresponsive”servicestopeoplewithmentalhealthproblems.

Buildinginchecksandbalances

The majority of mental health and health policy documents included sections onaccountability,monitoring,evaluationandresearch.

Accountabilityincluded:

annual reportingmechanisms / governance structures (e.g., C1,C2, C13, C15,NSW4, NSW9, QSLD3, QSLD5, SA2, SA4, SA5, WA3, WA4, TAS1, TAS3, NT2,ACT3);

developmentofkeyperformancemeasures(e.g.,C3,C5,C13,VIC1,VIC5,WA1,WA4,TAS3,ACT4);

datacollection(e.g.,C12,NSW7,QSLD4,SA7,TAS3,ACT2).

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Monitoringincluded:

establishing key indicators of change (e.g., C7, C8,NSW4,NSW5,NSW9, SA7,WA2,QSLD3,VIC4);

establishment of monitoring groups involving key stakeholders (e.g., C3, C8,NSW1,ACT1,ACT2,SA1,WA2);

reporting on data including National mental health data collection andreporting(e.g.,C7,VIC3,ACT2);

operationalplans(e.g.,TAS1,TAS2);

settingtargetsforreform(e.g.,C7).

Evaluationincluded:

independentevaluationafter5years(e.g.,C2,C3,VIC2,NSW4);

developmentofevaluationframework(e.g.,C3,QSLD2,WA4,TAS3);

consumer,carerandbroadercommunityperceptions(e.g.,C5,VIC3,VIC8);

developmentofbest‐practicemodels(VIC3);

qualityandcomplaints(e.g.,C5).

Researchincluded:

addressgapsandimproveservicedelivery(e.g.,C4,C8,C12,NSW2,VIC3,VIC6,SA1,SA2,SA5,TAS3);

improveaccesstodata(e.g.,C7,VIC6,QSLD4);

improvelinksbetweenresearchandknowledgemanagement(QSLD1).

TherecentintroductionoftheNDISmeansitistooearlytotrackatpolicyorservicedeliverylevelstheimpactoftheuniversalserviceobligationagreementsonaccesstomentalhealthservicesbypeoplewithintellectualdisability.Nonetheless,advocacybygovernment officials and professionals working with people with this group hasalreadyresultedinrecommendationsforchangeinonejurisdiction,NSWthroughtheLivingWellstrategicplan(NSW10).

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4.4PolicyCaseStudy:NewSouthWales

IntellectualdisabilitymentalhealthpolicyisbynatureofAustralia’sfederatedsystemdifferently structured and articulated in each Australian state and territoryjurisdiction.AdetailedanalysisofeachStateandTerritoryframework(or lackof) isbeyondthescopeofthisreport.However,inthissectionwedescribetheNSWLivingWell(NSW10)strategicplandocumentinmoredetailandmakelinksbetweenitandthe disability policy context to highlightways inwhich the specific needs of peoplewith intellectualdisabilityandmental ill‐healthmaybeaddressed.NSWwaschosenasapositivepolicyexemplarforanumberofreasons:

I. ofall thedocuments included in theanalysis, theLivingWell document is themostcohesiveinaddressingtheissueofpeoplewithintellectualdisabilityandmentalill‐health;

II. theresearchteamconductingthepolicyanalysisisbasedinNSW;

III. allpartnerorganisationsare fromNSWandsowereable toprovidevaluableadditionalinformationaboutthedevelopmentoftheLivingWellstrategicplan.

NSWlegislationandpolicy

Figure3providesanoverviewofandrelationshipbetweentheNSWdisability,mentalhealth and health legislation, included policy and associated documents. Theassociateddocuments:NSWHealthDisabilityActionPlan,2010 and theMemorandumof Understanding (MOU) between NSW Health and the Department of Ageing,DisabilityandHomeCare(ADHC),2011indicatethewholeofgovernmentapproachtodisability advocated by the NSW government and, in particular, via the MOU,recognitionofthespecifichealthcareneedsofpeoplewithintellectualdisability.TheLivingWell StrategicPlan forMentalHealth ServicesNSW2014‐2024 addresses thementalhealthneedsofpeoplewith intellectualdisabilitywithChapter7of theplandescribingthegapinmentalhealthcareforthisgroupandoutliningspecificstrategiestoaddress thegap.Thebi‐lateral agreementbetween theCommonwealth andNSW:TransitiontoaNDIS,2015setsoutthearrangementsfortransitiontothefullschemeNDISinNSWbyJuly2018.Underthisagreement,theNSWgovernmentwillceasetoprovide specialist disability services once full rollout is achieved.

Figure3MappingofNSWLegislationandPolicy

4 NSW DISABILITY LEGISLATION Guardianship Act, 1987

Disability Discrimination Act, 1993 Disability Inclusion Act, 2014 (replaced

Disability Services Act, 1993)

NSW MENTAL HEALTH LEGISLATION Guardianship Act, 1987

Mental Health (Forensic Provision) Act, 1990 NSW Mental Health Act, 2007 (reviewed 2014)

Mental Health Commission Act, 2012

NSW HEALTH LEGISLATION 31 separate pieces of legislation

administered by NSW Health

INCLUDED MENTAL HEALTH POLICIES NSWAboriginalMentalHealthandWell‐being

Policy,2006‐2010(currentlyunderreview) Multi‐culturalMentalHealthPlan,2008‐2012 SafeStartStrategicPolicy,2009 NSWSuicidePreventionStrategy,2010‐2015 NSWSchool‐LinkStrategy&ActionPlan,2014‐

2017

INCLUDED GENERAL HEALTH POLICIES

Women’sHealthPolicy,2009‐2011 Men’sHealthPolicy,2009‐2012 YouthHealthPolicy,2011‐2016 NSWAboriginalHealthPlan,2013‐

2023 NSWStateHealthPlan:Towards

2021

STRATEGIC PLAN Living Well: A Strategic Plan for Mental

Health in NSW 2014-2024

ASSOCIATED DOCUMENTS NSWHealthDisabilityActionPlan,2010; MOUbetweenNSWHealth&ADHCre

provisionofservicestopeoplewithIDandmentalillness,2011

Chapter 7: Care for AllPeople with intellectual disability

represented as a population with specific mental health needs

Bi-lateral agreement between the Commonwealth and NSW: Transition to a

NDIS, 2015

LivingWell:apositivepolicyexemplar

LivingWell:A strategicplan formentalhealth services inNSW2014‐2024 (NSW6), areportbytheMentalHealthCommissionofNSW,wasdevelopedwithinputfromtheNSWgovernmentdepartmentsofHealth,FamilyandCommunityServices,EducationandCommunities,andJustice.InDecember2014,theNSWGovernmentendorsedtheLivingWellstrategicplanasunderpinningandinformingthedevelopmentandreformoftheNSWmentalhealthsystemoverthefollowingtenyears.TheNSWgovernmentacceptedall141actionscontainedintheplan.Atthattime,thegovernmentmadeaninitial $115million investment in improvingmental health serviceswith the aim ofmakingmental health servicesmore responsive to individual needs and supportingpeople to stay out of hospital and in their community (see information about theinvestment on the Mental Health Commission NSW websitehttp://nswmentalhealthcommission.com.au/our‐work/taking‐on‐the‐challenge‐of‐change).Sincethisinitialinvestment,therehasbeennofurtherpublicannouncementabout the Government’s plan for implementation (personal correspondence withMentalHealthCommissionNSW).

TheLivingWellplanprovidesanexampleofadocumentinwhichthementalhealthofpeople with intellectual disability is recognised as an issue requiring dedicatedstrategies to ensure appropriate and accessible services. Within Chapter 7 of thereportunderaheading‘CareforAll’(pp.88‐91)peoplewithintellectualdisabilityaredescribedasa‘special’populationgroup4.Inmakingthecaseforthefocusonpeoplewithintellectualdisability,thereporthighlightedthatabout2%ofthepopulationhasan intellectual disability and there are estimates that approximately half of peoplewithintellectualdisabilityhaveexperiencedmentalill‐health.Indicatingproblemsforpeople with intellectual disability and mental illness getting appropriate help, thereportstated(p.88):“Peoplewithintellectualdisabilityaremorelikelythanotherstoexperiencemental illness, and yet access to mental health services for people withintellectualdisabilityislimitedandfallsfarshortofthatforthegeneralpopulation”.

In recognition of the particular needs of this group, the NSW government funded aChairofIntellectualDisabilityMentalHealthatUNSWAustraliawhichcommencedin2009.The information inTable4below is summarised from theLivingWell plan toshowthattheChairhasbeenresponsiblefordevelopinganumberofstrategiesaimedatreducingbarrierstomentalhealthservicesforpeoplewithintellectualdisabilityinNSW.

4OtherspecialpopulationgroupsmentionedinChapter7areLGBTI,multi‐cultural,peoplewitheatingdisordersandthosewithborderlinepersonalitydisorders.

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Table4NSWexemplarbarriersandstrategies

Barrierstomentalhealthservicesaccessforpeoplewithintellectualdisability

Strategiesaimedatreducingbarriers

Communicationdifficulties Developaccessibleinformationforpeoplewithintellectualdisability,theirfamiliesandcarersaboutmentalhealthservices.

Atypicalandcomplexpresentations Developarecovery‐orientedmodelofcareforpublicmentalhealthservicestoworkwithpeoplewithintellectualdisability.

Lackoftrainingaboutintellectualdisabilityformentalhealthprofessionalsandaboutmentalhealthfordisabilityprofessionals

E‐learningwebsiteproviding:up‐to‐dateinformationtoserviceprovidersandcarersaboutintellectualdisabilityandmentalhealth;extratrainingforhealthanddisabilityprofessionalstobuildtheircapacitytosupportpeoplewithintellectualdisabilityandmentalillness;

AnAccessibleMentalHealthServicesforPeoplewithanIntellectualDisability:aguideforprovidersoutliningprinciplesandpracticalperson‐centred,inclusiveandaccessibleservices;

Trainingforallmentalhealthanddisabilitysectorstaffintherecognition,assessment,referralpathwaysandtreatmentforpeoplewithintellectualdisabilityandmentalillness

Poorlydevelopedinteragencyservicemodelsresultinginpeoplewithintellectual“fallingbetweenthegaps”

DevelopingpartnershipsbetweenNSWHealth,community‐managedandprivatesectorsupportsforpeoplewithintellectualdisabilityandmentalillness

Inadequateresourcinginbothsectors CoordinationofcareandsupportundertheNDIS

ThestrategiesincludedintheLivingWelldocumentindicateawayforwardforpolicyandpracticetoaddressthebarriersfacedbypeoplewithintellectualdisabilitywhohaveamentalillness.

5.Discussion

Public policy drives the investment and actions governments make in response toidentified issues with service delivery priorities responsive to policy directions.Governmentsfacemanycompetingdemandsforrecognitionofspecialinterestgroupsandissuesincreatingpublicpolicy.Thelackofrecognitionandaccommodationofthespecific mental health needs of people with intellectual disability identified in thisreport is one such pressing issue. There is considerable evidence that people withintellectualdisabilityhaveahighincidenceofmentalill‐healthandexperiencelimitedaccesstomainstreammentalhealthservices.TheFourthNationalMentalHealthPlan(C5) acknowledges this situation but fails to provide policy direction on how toaddresstheissue.Thecurrentpoormentalhealthoutcomesofpeoplewithintellectualdisability will only improve when their specific needs are addressed in policy andpractice.

Whyshould thisgapbeaddressed inpublicpolicy?Acomparisonofpopulationandprevalence of mental ill‐health among people with intellectual disability and forAboriginalandTorresStraitIslanderpeopleshighlightsthecaseforaconcertedfocuson the specific mental health and health needs of these particular groups. TheproportionoftheAustralianpopulationwhohaveanintellectualdisability(1‐2%)issimilar to the proportion of Australians from Aboriginal and Torres Strait Islanderbackgrounds(3%accordingtoAIHW2015estimates). Fiftysevenpercentofpeoplewithintellectualdisabilityareestimatedtohaveamentaldisorder(ABS2010;Trollor,2014) while approximately 30% of Aboriginal and Torres Strait Islander peoplesreportedexperiencinghighorveryhigh levelsofpsychologicaldistresswith11%ofvisitstogeneralpractitionersduringtheperiod2008‐2013relatedtomentalill‐health(AIHW,2015).TheneedtoaddressissuesrelatedtothementalhealthofIndigenousAustralians has rightly been recognised as a priority within all included policydocuments and dedicated strategies to address this issue have been identified.However, issues on a similar or even greater scale for people with intellectualdisabilityremainlargelyunaddressedinanysystemicorsystematicway.

Issues for people with intellectual disability are often subsumed within theencompassinggeneralcategoryof‘disability’.DisabilityisdefinedbytheInternationalClassificationofFunctioning(ICF)as theconsequenceofan impairmentthatmaybephysical, cognitive,mental, sensory,emotional,developmental, or somecombinationof these that significantly impacts on functional capacity(http://www.who.int/classifications/icf/icf_more/en/). A disability may be presentfrombirth,oroccurduringaperson'slifetime.Manyofthementalhealth,healthanddisabilitypolicydocumentsinterrogatedinthisstudyechothislackofdifferentiationalongimpairmentlines,referringtodisabilitywithoutspecificmentionofintellectualdisability. While there are good arguments for the recognition of a unifyingexperienceofdisabilityasoneofmarginalisationandoftenentrenchedandsystemic

40

discrimination, the lack of attention to the specific experiences related to differentimpairments may mean the specific needs for support required by people withintellectual disability are overlooked. Many people with intellectual disabilityexperiencechallengeswithliteracyandcommunicationskillsthatmakeitdifficultforthemtousemainstreamhealthandmentalhealthservices(DepartmentofHealthUK,2001).Thereisevidencethatthisgrouprequiresspecificexpertise,modificationsandadaptationstobewellsupportedinhealthandmentalhealthservices(DepartmentofHealth UK, 2001).With the exception of the NSW and Victorian examples providedearlier, recognitionof theneed for theseaccommodations isabsent fromthementalhealthandhealthdocumentsanalysedforthisreport.

Afurtherdimensiontolackofrecognitionoftheaccommodationsrequiredtosupportindividualswith intellectual disability andmental ill‐health and their families is theneed for improved systemic responses. TheNationalDisabilityStrategy sets out theneed forahigh levelpolicy framework to “givecoherence to,andguidegovernmentactivity across mainstream and disability‐specific areas of public policy” (NationalDisability Strategy, p. 9),with a specific focus on enabling peoplewith disability to“attain highest possible health and wellbeing outcomes throughout their lives”(NationalDisabilityStrategy,p.59).Thisrequirementpointstotheneedforcapacitybuildinginmainstreamsettingsandfortrainingformentalhealthandhealthstaffinhow to best support the inclusion of individualswith intellectual disability in theirservices (Department of Health UK, 2001). Similarly, staff working in the disabilitysector, require training in how to recognise and support people with intellectualdisability who present with mental health problems. The NSW example provides atemplateforwaysinwhichboththeseaimsmaybeachieved.

The UK Valuing People: A new strategy for learning disability for the 21st century(Department of Health UK, 2001) provides a useful model for how specialist andmainstreammentalhealthservicescansupportchildren,adolescentsandadultswithintellectualdisabilityandmentalill‐health.StrategiessuggestedintheValuingPeoplewhite paper include: agreements between health authorities and local councils forjoint child and adolescent mental health plans to include 24 hour coverage andoutreach services; early intervention and prevention programs (p. 41); nationalservice frameworks that include the development of accessible materials andinformation;investmentinstrategiestopromotecollaborationbetweendisabilityandmental health services; development of expertise among care providers in bothintellectualdisabilityandmentalhealth;roleofspecialistdisabilitystafftosupportapersonwithintellectualdisabilitytoaccessmentalhealthservices(p.66‐67).

DespitetheshortcomingsintheAustralianmentalhealthandhealthpolicydocumentsinrelationtopeoplewithintellectualdisability,thereiscauseforoptimismregardingthe ways in which mental health, health and disability policy may be made moreinclusiveoftheneedsofpeoplewithintellectualdisabilityandmentalillness.The

41

values underpinning all policy documents regardless of population and contentindicates a consistent platform of rights‐based, consumer and strengths focussedprinciples.Thesevaluesprovideasharedstartingpointfromwhichtodeveloppolicythat is inclusive of the specific requirements and needs of people with intellectualdisabilityandmentalillness.

6.InclusiveIntellectualDisabilityMentalHealthPolicy

The review presented in this report provides evidence that policy addressing themental health needs of people with intellectual disability in Australia is currentlyunderdevelopedandlackscoherence.Thisstudyhaspresentedthecaseforactiontorecogniseandaddressthementalhealthneedsofpeoplewithintellectualdisabilityinpolicy. With full implementation of the NDIS imminent this challenge is now moreurgent as the interface between health and mental health services and specialistdisabilityservicesmovesfirmlyontothepolicyagenda.TheultimategoaloftheNDISwould see seamless support for people with intellectual disability who experiencementalillnessandforthepsychosocialdisabilitythatresults.

The evidence presented in this report suggests that there remain significant policychallenges to achieving the desired outcome of a co‐ordinated national strategy toenhance inclusive intellectual disability mental health policy. The report alsohighlights the shared disability / mental health policy and practice values that arebased on inclusive, person‐centred, community‐based and strengths‐basedapproaches.Thissharedvalues‐baseprovidesaplatformonwhichtobuild.Asanextsteptothedevelopmentofinclusivepolicy,accuratenationwidedataisrequiredthatshows the prevalence and causes of mental illness among people with intellectualdisability; and the barriers experienced by people with intellectual disability inaccessing,or trying toaccess,mentalhealthservices.Aims1and3of the Improvingthe Mental Health Outcomes of People with Intellectual Disability NHMRC‐fundedprojectwill address thesepoints (see page8). The development of a partnership ofinterestedstakeholders(Aim4)willensuretheongoingdevelopmentandapplicationofevidence‐basedapproachestoinformaco‐ordinatednationalstrategy.WesuggestthatgoodpolicyinthisarearequiresthearticulationofanewapproachandstrategiesacrosspolicydomainsconsistentwithWaltandGilson’s (1994) framework:context,stakeholders, process and content. Figure 4 provides an overview ofwhat inclusiveintellectual disability mental health policy should include across each of thesedomains.

Figure4InclusiveIntellectualDisabilityMentalHealthPolicy

CONTEXT UNCRPD

NDIS/MH interface Incidence & prevalence of

IDMH

STAKEHOLDERS People with ID/MH, families &

carers Disability service providers &

professionals MH service providers &

professionals Community

Policy makers

PROCESS Human Rights

Whole of government Cross sector partnerships

Workforce training/professional

development & resources Specialist input

CONTENT Evidence-based

Across the life-course Measureable actions and targets Strategies for accessible services

KNOWLEDGE TRANSLATION PLAN & STRATEGIES Bridge research-to-policy-and-practice gap

6.1Context

Thecontext inwhichpolicyisdevelopedandanalysedinvolvesamacroapproachtoidentifythecontextualfactorsunderpinninggovernmentalpolicydecisions.

Overarching principle: mental health and intellectual disability share a commonhistoryandphilosophymovingfromsegregatedtocommunity‐based,person‐centredandinclusiveservicedelivery.

Strategies: the context inwhich inclusive intellectual disabilitymental health policywillbedevelopedandimplementedwillrecognise:

The UNCRPD that advocates equality, choice and control for all people withdisability includingpeoplewith intellectualdisabilityandpeoplewithmentalillness;

Theinterfacebetween,andalignmentof,CommonwealthandState/Territory‐based policy processes in disability and health/mental health including theNDISInterfacePrinciples,NDSandMentalHealthreforms;

The imperative of addressing the mental health needs of people withintellectual disability as indicated by the incidence and prevalence ofmentalillnessforthisgroup.

6.2Stakeholders

Stakeholdersincludeindividualsorrepresentativeswhoare(orshouldbe)engagedinthepolicymakingprocessduetoapersonalorprofessionalinterestinthepolicytopic.

Overarchingprinciple:stakeholders fromacrosspolicy,practiceand livedexperienceprovideinputtodevelopstrategiesforinclusionofpeoplewithintellectualdisabilityinmentalhealthpolicyandpracticefornationalimplementation.

Strategies:

Stakeholdermappingtoidentifythekeyplayerswithwhomtoengageandtheirrolesandresponsibilitiesincluding:

o Individuals with intellectual disability and mental ill‐health, theirfamilymembersandcarers;

o Disabilityserviceprovidersandprofessionals;

o Mentalhealthserviceprovidersandprofessionals;

o Communitymembers;

o Commonwealth,State/Territoryandpeakbodypolicymakers.

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The NDIA Intellectual Disability and Mental Health Reference Groups, whichincludeindividualsrepresentingeachoftheabovestakeholdergroups,workingcollaboratively to draft policy and strategies for use across the two groupswithintheNDIS.

6.3Process

The process of making policy describes how policy agendas are set, developed andimplemented.

Overarchingprinciple:nationalcommitmentvialegislation,policyandfundingtomeettheneedsofpeoplewithmental illnessandofpeoplewith lifelongdisabilitysuchasintellectualdisability.

Strategies:inclusiveintellectualdisabilitymentalhealthpolicywillbecognisantofthefollowing:

Humanrightsasallpeoplewithdisabilityareentitledtoreceivethesupportsandservicestheyrequiretoleadafulllifeintheircommunity;

Whole of government recognition of themental health needs of people withintellectualdisability;

Cross sector partnerships working towards a ‘no wrong door’ approach toserviceprovisionsuchthatpeoplereceivethesupporttheyneedfromthemostappropriate sector (i.e., peoplewith intellectual disabilitywithmental illnessareabletoaccessaninformedandresponsivementalhealthservices);

Workforcetraining,professionaldevelopmentandresourcesthatprepareandequip the disability and health/mental health workforces to deliver a highstandardofsupporttopeoplewithintellectualdisabilityandmentalillness;

Access to specialist input from the disability and mental health sectors asrequired (i.e., mental health practitioners with expertise in working withpeoplewithadualdiagnosisofintellectualdisabilityandmentalillness).

6.4Content

Contentreferstothetechnicalfeaturesofthepolicy–whatisincluded,howthepolicyshouldbeoperationalisedandorganisationalissues.

Overarching principle: policy based on best available evidence clearly articulatesinclusive strategies across the life course and ensuresmechanisms to evaluate theireffectiveness.

Strategies:inclusiveintellectualdisabilitymentalhealthpolicywill:

45

Be based on the best available evidence about the mental health needs ofpeoplewithintellectualdisability;

Acknowledge and address the issues that individuals with intellectualdisabilityandmentalillnessfaceacrosstheirlifecourse;

Establishmeasureableactionsandtargetsassessedviamonitoring,evaluationandresearch;

Articulatestrategiesforincreasingtheaccessibilityofdisability,mentalhealthand health services for people with intellectual disability with particularattentionpaidtoaugmentativeandalternativecommunicationstrategies(e.g.,use of visuals, speech‐generating devices), information format (e.g., PlainEnglish, visuals, universal signs), adaptation of models of practice, physicalmodifications,andstaffexpertise.

6.5Knowledgetranslationapproach

Knowledge Translation (KT) is the exchange, synthesis, and ethically‐soundapplicationofknowledgewithinacomplexsystemofinteractionsamongresearchersand users to accelerate the capture of the benefits of research for all (CanadianInstitutesofHealthResearch).

Overarching principle: a KT approach will ensure inclusive intellectual disabilitymentalhealthpolicywillbeinformedbyup‐to‐dateresearchevidenceandintegratedintobestpractice.

Strategies:KTplansandstrategiesarerequiredtoaddresstheidentifiedresearch‐to‐policy‐and‐practicegapsbetweenserviceusers(peoplewithintellectualdisabilityandfamily/carers), practitioners, researchers and policy makers (Lavis, 2006).DevelopmentofKTplansinvolves(Barwick,2010)the:

articulationofKTgoals;

developmentofkeymessagesrelatedtogoalsandevidence;

identificationofkeystakeholderssothatKTstrategiesaretailoredtospecificaudiences.

7.Conclusion

BasedontheevidenceofthisanalysisofexistingAustralianCommonwealthandStateandTerritorypolicydocumentsonrepresentationof intellectualdisability inmentalhealthandhealthpolicydocuments,thereisaclearneedtodevelopacomprehensivepolicyframeworkunderpinnedbytheinclusionofpeoplewithintellectualdisability,andinlinewithAustralia’sobligationsundertheUNCRPD.Thisinclusiveintellectualdisabilitymentalhealthpolicywilltakeintoaccountthecontextwithinwhichthe

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policy is developed, thekey stakeholders, theprocessof developing inclusivepolicyandthecontenttailoredtotheneedsofpeoplewithintellectualdisabilityandmentalill‐health. A knowledge translation approach will ensure that policy is informed bybest evidence and practice and, that end users are engaged throughout the policyprocess.Aninclusiveapproachtothedevelopmentandimplementationofintellectualdisabilitymentalhealthpolicywilladdressthecurrentlackofattention,ashighlightedin this report, to the importantareaofhowtobestmeet thementalhealthneedsofindividualswithintellectualdisability.

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AppendixAPartnershipTeam

ThisprojectisfundedbyaNationalHealthandMedicalResearchCouncilPartnershipsforBetterHealthProjectGrant(APP1056128).ThePartnershipteamconsistsof:

ChiefInvestigators

JulianTrollor,DevelopmentalDisabilityNeuropsychiatry(3DN),SchoolofPsychiatry,UNSWAustralia

EricEmerson,CentreforDisabilityResearchandPolicyUniversityofSydney&CentreforDisabilityResearchLancasterUniversity,UnitedKingdom

Rhoshel Lenroot, Neuroscience Research Australia, Randwick, NSW, Australia &School of Psychiatry, School of Psychiatry, UNSWAustralia, & Child and AdolescentMentalHealthServices,SoutheasternSydneyLocalHealthDistrict,Australia

Karen Fisher, Disability Research Program, Social Policy Research Centre, UNSWAustralia

KimberlieDean,ForensicMentalHealth,SchoolofPsychiatry,UNSWAustralia

LeanneDowse, IntellectualDisabilityandBehaviourSupport(IDBS),SchoolofSocialSciences,ArtsandSocialScience,UNSWAustralia

AssociateInvestigators

EileenBaldry,SchoolofSocialSciences,ArtsandSocialScience,UNSWAustralia

Tony Florio, Developmental Disability Neuropsychiatry (3DN), School of Psychiatry,UNSWAustralia

Grant Sara, Health System Information and Performance Reporting Branch, NSWMinistryofHealth

Phillip Snoyman, NSW Department of Justice ‐ Corrective Services NSW, Sydney,Australia

LesWhite,AgencyforClinicalInnovation&NSWMinistryofHealth,Sydney,Australia

ProjectStaff

Ulrika Athanassiou, Intellectual Disability and Behaviour Support (IDBS), School ofSocialSciences,ArtsandSocialSciences,UNSWAustralia

Angela Dew, Intellectual Disability and Behaviour Support (IDBS), School of SocialSciences,ArtsandSocialSciences,UNSWAustralia

Preeyaporn Srasuebkul, Developmental Disability Neuropsychiatry (3DN), School ofPsychiatryUNSWAustralia

ErinWhittle,DevelopmentalDisabilityNeuropsychiatry(3DN),SchoolofPsychiatry,

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UNSWAustralia

Simone Reppermund, Developmental Disability Neuropsychiatry (3DN), School ofPsychiatry,UNSWAustralia

PartnerOrganisations

Agency for Clinical Innovation – Intellectual Disability Network, represented byTraceySzanto

NSWDepartmentofFamily&CommunityServices‐Ageing,DisabilityandHomeCare,representedbyDavidCoyneandCarolHannaford

NSWDepartmentofEducation&Communities,representedbyMelissaClements

NSW Department of Justice ‐ Corrective Services NSW, represented by PhillipSnoyman

NSW Ministry of Health – Justice Health & Forensic Mental Health Network,representedbyKimberlieDean

MentalHealthCommissionofNSW,representedbySarahHanson

NSW Ministry of Health – Mental Health & Drug & Alcohol Office, represented byChristineFlynn

MentalHealthReviewTribunal,representedbyAninaJohnson

NationalandNSWCouncilforIntellectualDisability,representedbyJimSimpson

NationalDisabilityServices,representedbyPhilippaAngleyandGordonDuff

NSWOfficeofthePublicGuardian,representedbyKathyKingandJustineO’Neill

NSWOmbudsman,representedbyKathrynMcKenzie

AppendixBPolicyAnalysisFramework

ACTORS CONTEXT PROCESSES CONTENT

Whowasinvolvedinformulatingthepolicydocument?

Politicians

Bureaucrats

Consumers

Serviceproviders/professionals

Academics

Whatisthecontextforthedevelopmentofthepolicy?

Macro

Micro

Inter‐sectorial

International

National

State

Local/community

Individual

Worldwidetrends

Research

Howwasthepolicyissueidentified?

Previouspolicy

Crisisdriven

Needsassessment

Situationalanalysis

Whatisincludedinthepolicydocument?

Strategies

Timeframes

Indicators

Targets

Activities

Definitions&language

Person/sresponsible/carer/guardian

Outputs

Obstacles/risks

Costs/funding

Coordinationand

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Advocacy

Legislation

Rurality

Life‐course

management

Evaluationofquality/monitoring&complaintsmechanisms/research

Humanresources/workforce

KnowledgeTranslationstrategies

Howweretheyinvolved–individually,ingroups,bysubmission,inperson?

Howisintellectualdisabilityrepresentedinandalignedwiththecontext?

IDincludedsingularlyand/orincombinationwithotherissues‐complexity

Whatwastheimpetusfordevelopingandimplementingchange?

Towhatextentandinwhatwaysisintellectualdisabilityincludedinthecontent?

Werepeoplewithintellectualdisability,theircarers,thosewhoworkwiththemrepresented?

Isthepolicyinlinewithbestpracticeandhumanrightsprinciples?IstheUNCRPDand/orunderlyingrightsprinciplesreferredto?

Towhatextentdoespolicyconformwiththevalues,principlesandobjectivesspecifiedintheUNConvention?

Aretherestrategiestoaddressthementalhealthneedsofpeoplewithintellectualdisability?

Istheneedforcommunicationadjustmentincluded?

Towhatextentarethestrategiesoutlinedforpeoplewithintellectualdisability

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linkedtoclear,measurableactionsortargets?

Focusonbuildingthecapacityofthepersonwithdisabilitytoidentify/managetheirmentalhealthneeds

Identifyroleofsupporteddecisionmaker

Whatistheplanfortranslatingthepolicyintoaccessibleservicesforpeoplewithintellectualdisability?

WhatismissingornotclearinthispolicyinrelationtopeopleIDandMHissues?

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