Optimising care for children with developmental disorders and chronic illnessVictorian Paediatric Clinical Network

www.health.vic.gov.au/clinicalnetworks/paediatric/index.htm

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Forum program Thursday 16 April 2015, 9.30 am to 4.10 pm (coffee from 9 am)

Melbourne Convention Centre, South Wharf, Melbourne, Rooms 219 and 220

The Victorian Paediatric Clinical Network (VPCN) welcomes you to its ‘Optimising care for children with developmental disorders and chronic illness’ forum. The theme of the forum is improving the care and management of children with chronic illness or developmental conditions.

The purpose of the forum is to:

• provideanopportunityforabroadrangeofhealthprofessionalstocometogetheraround a common interest

• toplacedevelopmentaldisordersandchronicillnessincontextbyincludingtheconsumerexperience

• provideclarityonthecurrentserviceenvironmentfromagovernanceandcommunityperspective– forexamplewhatimpacttheNationalDisabilityInsuranceScheme(NDIS)maymakeandwhatelse isavailableinthecommunity

• totalkaboutbehavioursofconcernfrombothanevidence-basedandapracticefocus

• tolookatthefuture,transitionprocesses,theirdesignandtheirreality,frompaediatrictoadultcare.

Sessionswillfocusontheearlyyears,managingbehavioursofconcernandthetransitionfrompaediatric to adult services.

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9–9.30 am Arrival tea/coffee and registration (30 minutes)

9.30–9.45 am Welcome and opening address

Assoc. Prof. David ArmstrongDr Peter McDougall PaediatricClinicalNetworkCo-ClinicalLeads

9.45–11.10 am The early yearsSession chair: Dr Donna Henderson–Consumerfamilyrepresentative,PCNLeadershipGroup,AssociationforChildrenwithaDisability

Thissessionsetsthescene,includinghearingofafamily’sexperiencefromfirstrealisingtheremightbesomethingwrongthroughtodiagnosisandthennavigatingthemazeofavailable services and providers.

The consumer experience

Ms Julie Noorman–Parentofachildwithachronicillness

Hear a family’s story of their journey navigating the system with a child who has a chronic illness. Thispresentationwillhelpusappreciatethedifferentissuesfacedbyfamiliesandprovideaconsumerandfamily-centredreferencepointfortherestoftheday.

What services and resources are available

Ms Debby Conlon–CommunityEducationCoordinator,AssociationforChildrenwithaDisability

TheAssociationforChildrenwithaDisability(ACD)istheleadingadvocacyandinformationserviceforchildrenwithanytypeofadisabilityandtheirfamilieslivinginVictoria.Thispresentationwillprovideanoverviewofthedifferentservices,supportgroupsandresourcesavailabletofamilieswithachildwithadisabilityandwillhelptodevelopacommonunderstandingofwhata‘goodoutcome’mightlooklikefromafamily’sperspective.Asanoutcomeofthissessionyoushouldbemoreconfidentinprovidinginformation,supportandreferralstofamiliestoaccessuniversalanddisability-specificsupportsandservices.

About the National Disability Insurance Scheme

Mrs Christine McClelland–ActingDirectorChildren,ServiceDeliveryBarwon,NationalDisabilityInsuranceAgency

TheBarwonregionhasbeenapilotsitefortheNationalDisabilityInsuranceScheme(NDIS),whichisduetocomeintoeffectnationallyinJuly2016.ThispresentationwillcovertheBarwonexperienceandwhatchangestheyarealreadyseeingfromthepilot.Fromthispresentation you will:

• betterunderstandtheNDISandhowitcanworkforfamiliesandprofessionals

• discoverthepotentialfortheNDIStoimprovethelivesoffamilies,highlightedbycasestudiesfromBarwon

• understandsomeofthechallengesintransitioningtotheNDISfromthecurrentdisability care environment.

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Panel discussion

Ms Julie Noorman, Ms Debby Conlon and Mrs Christine McClelland

Askourpanellistsquestionsaboutanyofthesessiontopics.

Asanoutcomeofthissession,forumparticipantsshouldcomeawaywiththreeideastheycanpractically apply to help families access important services and resources.

11.10–11.30 am Morning tea (20 minutes)

11.30–12.55 pm Behaviours of concern Session chair: Assoc. Prof. Michael Gordon–UnitHeadofthechildandadolescentstream inEarlyinLifeMentalHealthService(formerlyCAMHS),MonashHealth

Thissessionwilladdressbehavioursofconcerninchildrenwithintellectualordevelopmentaldisabilities,withafocusonschool-agechildrenandyoungpeople.Settingsaddressedwillincludeschool,homeandshare-housesituations.

The Disability Act 2006 and medications Ms Mandy Donley and Mr Brent Hayward–OfficeofProfessionalPractice(OPP), DepartmentofHealth&HumanServices

Thepolicycontextandanoverviewofcurrentpracticeandcurrentdatawillbecovered.LearnabouttheOPPandwhatitdoestoimproveservicesforpeoplewithcomplexneeds.Thispresentationwillalsoaddressissuessurroundinguseofchemicalrestraintformanagingdifficultbehaviourinchildrenandyoungpeopleandthecurrentworkbeingdonetosupportbestpracticeincluding current research.

Managing behaviours of concern at homeDr Catherine Marraffa–DepartmentofDevelopmentalMedicine,TheRoyalChildren’sHospital

Thispresentationwilladdressthemainbehavioursofconcernandwhenandwhyinterventionisneeded.Itwillprovideguidanceonwhattolookforandmanagementstrategiesthatcouldbeusedathomeandinothersettingstomanagebehavioursofconcern.

Navigating the school system and managing behaviours of concern Dr Jenny Proimos–PrincipalMedicalAdvisor,DepartmentofEducationandTraining

ThispresentationwilladdressbehaviourmanagementinschoolsfromtheperspectiveoftheDepartmentofEducationandTraining.Youwilllearnwhattoexpectfromthedepartmentintermsofsupport,fundingandcoordinationwithotherservices,aswellashearingaboutaccesstofundingforchildrenwithspecialneeds(ABLEs,etc.)andwhotocontactshouldfamiliesneedadditionaladvocacyorsupport.

Panel discussionMs Mandy Donley, Mr Brent Hayward, Dr Catherine Marraffa and Dr Jenny Proimos

Askourpanellistsaquestionaboutanyofthesessiontopics.

As an outcome of this session forum participants should come away with three ideas they can practically apply to help families access important services and resources.

12.55–1.40 pm Lunch (45 minutes)

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1.40–3.05 pm TransitionSession chair: Dr Jacinta Coleman – Head of Adolescent Medicine, Monash Children’s Hospital

This session will look at best-practice models for effective transition to adult care for young people with a disability or chronic illness including examples from existing programs.

Transition from paediatric to adult services – a Barwon Health perspective

Ms Sally Nepean – Transition Service Coordinator, Barwon Health

This presentation will cover how transition care is managed in Barwon including specialist skills programs and linking in to local medical specialists, community services and allied health providers. You will hear about the emerging relationship between the transition service and the National Disability Insurance Agency and its role in supporting transition clients.

From paediatric to adult services

Ms Evelyn Culnane – Transition Support Service Manager, The Royal Children’s Hospital

This presentation will address transition care provided at the RCH including the model of care Ms Culnane has developed with peer mentors. You will also learn about the key steps taken at the RCH when developing a transition program.

Transition case studies

Dr Kate Thomson Bowe – Spina Bifida Transition Lead, The Royal Children’s Hospital

Two case studies will be presented. One is of a young man with spina bifida who progressed though the RCH transition program. The second is the transition story of a young man with dual disability. His story highlights the difficulties in transition planning and transfer that can be experienced by this group of patients.

Developing a model of care to transition people with dual disability

Dr Chidambaram (Prakash) Prakash – Principal Hospital Psychiatrist, Mental Health, The Royal Children’s Hospital

Understand the challenges of developing a transition program for dual disability and learn what elements are crucial when developing a more complex transition program.

Panel discussion

Ms Sally Nepean, Ms Evelyn Culnane, Dr Kate Thomson Bowe and Dr Chidambaram Prakash

Ask our panellists a question about any of the session topics.

As an outcome of this session forum participants should come away with ideas for three things they can do to help families access important services and resources.

3.05–3.20 pm Afternoon tea (15 minutes)

3.20–4.05 pm Closing keynote: Bridging the disability–health interfaceMr Bruce Bonyhady – Chair, National Disability Insurance Agency

4.05–4.10 pm Closing and thank you

Assoc. Prof. David ArmstrongDr Peter McDougall A summary of highlights from the day.

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Speaker informationOptimising care for children with developmental disorders and chronic illness

Presenter:DrDonnaHendersonM.B.B.S.(Hons),F.R.A.C.G.P.,GradCertHigherEducation

Session:TheEarlyYears–Facilitator

Priortothebirthofher17-year-oldsonPatrick,DonnaworkedasageneralpractitionerintheEasternsuburbsofMelbourne.Patrick’sprematurebirthandsubsequentdiagnosisofcerebralpalsyat12monthsforcedDonnatograpplewiththefragmentedanduncoordinatedsystemshehadpreviouslyreferredpatientsto,oftenwithfarlessresourcesthanshehad.Donnabecameveryactiveinadvocatingfornotonlyherfamilybutforotherfamiliesaswell.

DonnanowworksattheAssociationforChildrenwithaDisability,wheresheisinvolvedincommunityeducationofhealthprofessionalsindevelopmentaldisability.InadditionDonnaworksattheCentreforDevelopmentalDisabilityHealthVictoriawheresheisinvolvedinundergraduatemedicalstudenteducationaboutdevelopmentaldisabilitiesatboththeUniversityofMelbourneandMonashUniversity.Donnaalsoisactiveinadvocacyparticularlyaroundthehealthissuesforpeoplewithdisabilities.

DonnaisoneofveryfewgeneralpractitionersinAustraliawhoseclinicalpracticespecialisesindevelopmentaldisability. Hergoalistouseherextensivepersonalandprofessionalexpertisetoassistfamiliescaringforachildwithadisabilitytoachievethebestoutcomesforthechildaswellasforthefamily.

Presenter:MsJulieNoorman

Session:TheEarlyYears

JulieisanITprofessionalandmotherofthree.Oneofherchildren,Olivia,wasdiagnosedwithcysticfibrosisatfourweeksofage.Julieispassionateaboutimprovingthequalityoflifeandaccesstoworld-classservicesforpeoplewithcysticfibrosis.SheisadirectorandcompanysecretaryofCysticFibrosisVictoria,aconsumerrepresentativefortheDepartmentofHealth&HumanServicesandMonashChildren’shospitalandakeyorganiserof‘64kmforCysticFibrosis’,aneventthatraisesfundsforresearchrelatedtocysticfibrosisatMCRI.

Presenter:MsDebbyConlonBA,BSW,CertIVTrainingandAssessment

Session:TheEarlyYears

DebbyisthecommunityeducationcoordinatoratAssociationforChildrenwithaDisabilityandhasworkedpreviouslyasaparentsupportworker,andasacasemanagerandteamleaderwithacommunityserviceorganisation.Debbyistheparentofayoungmanwithcerebralpalsy.

Presenter: MrsChristine(Chris)McClellandServiceDeliveryDirector,ChildrenBarwontrialsite,NDIS

Session:TheEarlyYears

PriortoworkingfortheNDISChrisworkedbetween2001and2013fortheDepartmentofEducationandTrainingin EarlyChildhoodInterventionServices.Chris’earlierexperienceandtrainingwasasanearlychildhoodeducator.

Presenter: Assoc.Prof.MichaelGordonUnitHeadEarlyinLifeMentalHealthService(formerlyCAMHS)

Session:BehavioursofConcern–Facilitator

MichaelGordonisachildpsychiatristandtheunitheadofthechildandadolescentstreamandactingunitheadfortheperinatalstreamoftheEarlyinLifeMentalHealthService(formerlyCAMHS)atMonashHealth.HehascompletedhisMDintheareaofadolescentdepressionandhaspublishedanumberofpapersinthisarea.MichaelisalsoanAdjunctClinicalAssociateProfessorofPsychiatryatMonashUniversityandhasbeeninvolvedintheschoolrefusalclinicandtheTimeforaFuturedepressionclinic.

Presenter: MrBrentHaywardPracticeAdvisor–Disability,RN,CredMHN,OfficeofProfessionalPractice, DepartmentofHealth&HumanServicesSession:BehavioursofConcern

BrentisaRegisteredNurseandCredentialedMentalHealthNursewithexperienceinbothpublichealthandnon-governmentsectors.HehasbeenworkingintheOfficeofProfessionalPracticeattheDepartmentofHealth&HumanServicessince2008whereheprovidespracticeadvicetotheDepartmentanditsfundedserviceprovidersinthecare andsupportofpeoplewithdisabilities.Brenthasaparticularinterestinevidence-basedapproachestobehaviourassessmentaswellasservicedesignanddelivery,particularlypositivebehavioursupport.

Presenter: MsMandyDonleyOfficeofProfessionalPractice(OPP)DepartmentofHealth&HumanServices

Session:BehavioursofConcern

MandyDonleyisacredentialedmentalhealthnursewithover30yearsofexperienceinmentalhealthincludingforensicpsychiatryandashorttimeworkinginanasyluminTransylvania.CurrentlysheisemployedaspracticeleaderofIntegratedHealthCarewithintheOfficeofProfessionalPractice,DepartmentofHealth&HumanServices.MandycoordinatesthechemicalrestraintreductionstrategywithindisabilityservicesinVictoria,whichincludesseveraldualdisabilityprojectsincollaborationwiththementalhealthsector.

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Presenter: DrCatherineMarraffaMBBSFRACPFRCPCHPaediatricianinDepartmentsofDevelopmentalMedicineandMentalHealthTheRoyalChildren’sHospital

Session:BehavioursofConcern

DrCatherineMarraffahas30yearsclinicalexperiencecaringforchildrenwithdevelopmentaldisabilities.Hercurrentresearchisontheuseofselectiveserotoninreuptakeinhibitorsinchildrenwithautism.

Presenter: DrJennyProimosPaediatrician and adolescent physicianPrincipalMedicalAdvisorDepartmentofEducationandTraining

Session:BehavioursofConcern

DrJennyProimosisapaediatricianandadolescentphysician,workingastheprincipalmedicaladvisorintheVictorianDepartmentofEducationandTraining.Herroleistoprovideleadershipandexpertadviceacrossgovernmentonchildandadolescentclinicalandpublichealthissuestoinformpolicies,programs,serviceimprovementandreformatstateandnationallevel.JennyalsoworksattheCentreforAdolescentHealthatTheRoyalChildren’sHospital,wheresheseesyoungpeoplewitharangeofchronichealthconditions.Shehasaresearchinterestinadolescentpublichealth,particularlyinthetranslationofresearchevidenceintopolicy.SheholdshonoraryfellowshipswiththeUniversityofMelbourneandtheMurdochChildren’sResearchInstitute,iscurrentlythePresidentoftheHarvardClubofVictoriaandisanon-executivedirectoronvariousnon-profitorganisationboards.

Presenter: DrJacintaColeman MBBSFRACP,Paediatrician,CertificateinChildandAdolescentPsychiatryHeadofAdolescentMedicine,MonashChildren’sHospital

Session:Transition–Facilitator

HavingqualifiedasapaediatricianatTheRoyalChildren’sHospital,Melbourne,JacintathentrainedinChildandAdolescentPsychiatry.Oncompletion,JacintacommencedworkintheareaofadolescenthealthatMonashChildren’shospital,whereshenowheadstheUnit.IntheAdolescentUnit,awidevarietyofyoungpeoplewithvaryingadolescentissuesgetassessedandmanagedbyateamofdedicatedmedical,nursingandalliedhealthprofessionals.

Inaddition,JacintaworksinprivatepracticeatTheChurchStreetConsultingSuitesinRichmond,andseesadolescentsand general paediatric patients.

Jacinta’sphilosophyistotreatallpatientsandtheirfamilieswithrespect,usingevidence-basedmedicinewherepossible,to manage a variety of medical and mental health issues in children and adolescents. Her passion is to engage young peopletovalueandtotakeresponsibilityfortheirphysicalandmentalhealthastheyjourneytoadulthood.

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Presenter: MsSallyNepeanCoordinator,TransitionService,BarwonHealthandSpeechPathologist, TraumaRehabilitationTeam,BarwonHealth

Session: Transition

SallyNepeanisthecoordinatoroftheTransitionServiceatBarwonHealth.InthisroleshehasoverseentheimplementationwithintheBarwonregionofaservicemodelthatensuresabestpracticeapproachinprovidinghigh-quality,youngadultandfamily-centredcareinthetransitiontoadulthealthservices.

ShehasplayedakeyroleinestablishingrelationshipsbetweenhealthanddisabilityserviceswiththeimplementationoftheNationalDisabilityInsuranceagencytrialsiteatBarwon.

SallyhasaBachelorofSpeechPathology.Shealsocurrentlyworkspart-timeasaseniorspeechpathologistinTraumaRehabilitationandinprivatepracticeprovidingservicestotheNDIAandtheTAC.

ShehasworkedacrossawiderangeofhealthservicesforadultandpaediatriccaseloadsinbothAustraliaandtheUnitedKingdom.Sheisactivelyinvolvedinseveralserviceredesignandconsumer-centredcareworkingpartiesatBarwonHealth,includingtele-rehabilitation.

Presenter: MsEvelynCulnaneManager,TransitionSupportService,TheRoyalChildren’sHospital

Session: Transition

AsManageroftheTransitionSupportServiceattheRCHwithabackgroundinadolescenteducationandextensiveexperienceinthehealthandcommunitysectors,Evelynhassuccessfullyimplementedtailored,sustainabletransitionmodelsofcareinpartnershipwithmultiplespecialtiesacrossthehospital,bridgingthegapbetweenpaediatric and adult healthcare.

Inadditiontotheconceptualisationanddevelopmentoftransitionandtransferpathways,theserviceusesyouthmentorship to assist in the delivery of holistic support and education for adolescents and their parents/carers.

TheTransitionSupportServicehascontinuedtoreceivemuchinterestandrecognitionlocallyandglobally,acknowledgedas one of the leaders in the provision of optimal transition care and reigniting the importance and value of transition.

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Dr Kate Thomson BoweM.B.,B.S.,F.R.A.C.PPaediatrician,DevelopmentalMedicineTheRoyalChildren’sHospital

Session: Transition

Kategraduatedwithhonours,fromMonashUniversityandundertookpaediatrictrainingatTheRoyalChildren’sHospital,Melbourne.ShehasbeenageneralpaediatricianforeightyearsandhasworkedinMelbourneandtheUnitedKingdom.

Kateworksinneuraltubedefect(spinabifida),developmentalmedicineandcombinedpsychiatryclinics.

Presenter: DrChidambaram(Prakash)PrakashAuthorised PsychiatristPrincipalHospitalPsychiatristMentalHealthTheRoyalChildren’sHospital

Session: Transition

Prakash’sareasofinterestareneuropsychiatryanddualdisabilityinkids.

Presenter: MrBruceBonyhadyChairmanBoardoftheNationalDisabilityInsuranceAgency

Session: Keynote speaker

MrBruceBonyhadywasformerlythePresidentofPhilanthropyAustraliaandalsoformerlytheConvenoroftheIndependentPanelappointedtoadvisetheProductivityCommissionandGovernmentduringtheInquiryintolong-termcareandsupportforAustralianswithdisability.HeisaMemberoftheDisabilityInvestmentGroupandtheReferenceGroupforthePensionReview.HewasdeputychairoftheNationalDisabilityInsuranceSchemeAdvisoryGrouptotheCouncilofAustralianGovernmentsandformerchairmanofYooralla.

MrBonyhadyhasalsoheldanumberofseniorpositionsinthefundsmanagementindustryandinsuranceindustryinAustraliaandinternationally.HeischairmanofAcadianAssetManagementAustraliaLimitedandadirectorofDexusWholesalePropertyLimited.Hisformerrolesincludeseniorpositionsinthefundsmanagementindustry,includingmanagingdirectorofANZInvestmentsandexecutivevicepresidentatBTFundsManagement.Hisearliercareerwasasan economist and econometrician in the private sector and the Commonwealth Treasury.

Heisthefatherofthreeadultsons,twoofwhomhavedisabilities.MrBonyhadywasappointedasamemberoftheOrderofAustraliain2010forservicestopeoplewithdisabilities,theirfamiliesandcarersandtothecommunity.

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VenueMelbourne Convention Exhibition Centre1 Convention Centre PlSouth Wharf, Melbourne, Victoriahttp://mcec.com.au

Sessions and breaksAllsessionswillbeheldinRooms219and220.

Registration deskTheregistrationdeskwillbeopenfrom9amto9.30amonThursday16April2015.Itwillbepositioneddirectlyoutside themainroom(Rooms219and220).

Nopersonalbelongingswillbekeptattheregistrationdesk.Youwillonlybeabletoregisterifyouhavepreviouslyreceivedanemailconfirmationthatyouronlineregistrationwasreceived.No‘doorsales’onthedaybutyoucancontactpaediatric.clinicalnetwork@dhhs.vic.gov.auupto24hourspriortotheeventtoseeifanyseatsareavailable.

Lost and foundTheVPCNisnotresponsibleforanydamaged,lostorstolenarticles.Itemsfoundduringtheforumshouldbehanded inattheregistrationdeskwheretheymaybeclaimed.

Audio/video recording of sessionsAudioorvideorecordingofanyoftheforumsessionsisstrictlyforbidden.PowerPointslidesfromthepresentationswill beavailableonlineviathePCNwebsite.Detailsofhowtoaccessthesewillbeprovidedviaemailaftertheforum.

Mobile phones and pagersDelegatesarerequestedtoturnoffmobilephonesandpagersduringsessionsastheymayinterferewiththeaudio-visualequipment in the rooms.

General information for delegates

Toreceivethispublicationinanaccessibleformatphone90966101,usingthe NationalRelayService133677ifrequired,oremail:paediatric.clinicalnetwork@dhhs.vic.gov.auAuthorisedandpublishedbytheVictorianGovernment,1TreasuryPlace,Melbourne.©StateofVictoria,April,2015CreativeCommonsAttribution3.0licence(creativecommons.org/licenses/by/3.0/au)Exceptwhereotherwiseindicated,theimagesinthispublicationshowmodelsandillustrativesettingsonly,anddonotnecessarilydepictactualservices,facilitiesorrecipientsofservices.ThispublicationmaycontainimagesofdeceasedAboriginalandTorresStraitIslanderpeoples.Availableatwww.health.vic.gov.au/clinicalnetworks/paediatric/index.htm(1502011)