Telling Your Story with Purpose Final Curriculum 9-30-17with advocacy and telling your story, and...

© 2017 Seattle Children’s Center for Children with Special Needs, Seattle, Washington. All rights reserved. For permission to use or adapt these materials, contact us at (206) 987-3736, Fax (206) 884-5741, Email: [email protected]

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TellingYourStorywithaPurposeFacilitatorGuideandCurriculum

CenterforChildrenwithSpecialNeeds,SeattleChildren’sHospital

WashingtonStateDepartmentofHealth,ChildrenwithSpecialHealthCareNeedsProgram


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GuidelinesforUsingTheseTrainingMaterialsThistrainingwasdevelopedbytheCenterforChildrenwithSpecialNeedsatSeattleChildren’sHospitalwithfundingfromtheWashingtonStateDepartmentofHealthChildrenwithSpecialHealthCareNeedsProgram.1. Youmayuseourtrainingmaterials,butweaskthatyoudonotchargepeopletoattend

thetraining(orchargeonlytocoveryourexpenses).

2. Foreachtrainingyougive,pleaseemailuswiththefollowinginformation:

• Dateoftraining

• Numberofattendees

• Copiesofevaluationsofthetraining

• Anysuggestedmodificationstothetraining

Email:[email protected]:SeattleChildren’sCenterforChildrenwithSpecialNeedsPOBox5371,M1-9Seattle,WA98105


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Generalpurposeofthetraining:This4-hoursessionisabasictrainingforparentsandcaregiverswhowouldliketoadvocateforpolicyorsystems-levelchangeforchildrenwithhealthconditions,behavioralormentalhealthconditions,ordisabilities.Itcoverswhatitmeanstoadvocateforchange;howtodefineanissuethatcanbeaddressedwithpolicyorsystemschanges;andhowtodrawonpersonalexperiencesasexamplestomakeapointeffectivelyandmemorably.Whilesomeinformationisprovided,thefocusofmostofthetimeinthetrainingisondevelopinga2-to3-minutepresentation(withoutanyvisualaids)thatcouldbedeliveredtoanindividualdecision-makeroragroupofdecision-makers,eg.legislators,aschoolboard,oracitycouncil.Thistrainingisdesignedtobenefitparentsandcaregiverswhoarenewtoadvocacyandthosewhohaveanintermediatelevelofexperience.


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TrainingOutline

1. WelcomeA. OverviewofagendaB. GuidelinesforgroupC. Meetinglogistics(breaks,bathroom,cellphones)

2. Participantintroductions

A. Participantsandfacilitatorsintroducethemselves

3. Whatmakesagoodstory?

4. DefiningyourissueA. ChoosinganissuethataffectsyourfamilyandotherfamiliesB. Determiningtheaudienceyouwilladdress–whohasthepowerto

makeachange?

Lunch

5. Preparingyourstory

6. Practicingyourstory

7. Wrap-upandevaluation


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MaterialsneededforthetrainingSetuptheroomtofacilitateeasyconversationandnotetaking.Havingatableortablestowriteonishelpful.Youwillneed:• Nametags• Sign-insheet• Trainingfolderateachplace(optional)• Pens• Copyofthesurveysandworksheetsforeachparticipant(seenextpage)• 1flipchartifpossible• Pre-filledflipchartpages(seelistonnextpage)• Markers• Signstohelppeoplefindtheroom• Lightsnacksandwater


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HandoutsPreandPostEvaluations:Evaluationsurveystocompletebeforeandafterthetraining,(Wesuggeststaplingthemtogethersothatyoucankeeptrackofhowtheknowledgereportedbytheparticipantschangedasaresultofthetraining).Handouts:1. Self-disclosure2. Questionstoask3. AdviceforYourDinnerPartyStories:KeepItFamiliarWorksheets:1. Definingyourissueworksheet2. Preparingyourstoryworksheet


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FlipChartPagesPreparethefollowingflipchartpagesaheadoftime:1. Introductions:

• Yourname• Child’sname,age,diagnosis• Onethingyouhavelearnedaboutyourselfsincebecomingaparent

(orthroughyourworkwithchildrenandfamilieswithspecialneedsifparticipantsarenotparents)

2. Agendafortoday:

• Listactivitiesontheagendawiththetimes3. Proposedgroupguidelines:

• Speakonlyforyourself• Listenrespectfully• Sharetheairtime• Honorconfidentiality

4. DefiningYourIssueWorksheet• Challengeorproblem?• Howareothersaffected?• Whatneedstochange?• Whohasthepower?


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Note:Useofitalicsthroughoutthecurriculumindicatesgeneralguidancefortheleader.

Asparticipantsarrive,askthemtocreatenametagsandcompletethepre-trainingsurvey.

Section1:Welcome 15minPurpose:Introducethetraining,givesparticipantsanoverviewandsetscontextandtone.Posttheday’sschedule,includinglunchandbreakswhereeveryonecanseeit.Materialsyouneedforthissection:

• Flipchartandmarkers• Pre-filledflipchartpage(agenda)• Pre-trainingsurvey

Welcomeattendees:

• Recognizetheeffortittakesforparentsandcaregiverstotaketimeawayfromalltheirotherresponsibilitiestocometothetraining.

• Providebriefintroductionoffacilitators–names,organizationalaffiliation,experiencewithadvocacyandtellingyourstory,andwhythistrainingisofinteresttoyou.

• Thepurposeofthistrainingishelpyou(parentsandcaregivers)learnhowtoprepareandshareandeffectivestorybasedonyourexperienceswithyourchild.Wewilldothiswithworksheetstohelpprepareyourstory,practiceroundsandcoachingfeedback.Eachofyoubringsexperiencesthatareunique,importantandvaluableandwelookforwardtoworkingwithyoutodevelopyourstories.Whenwedothistraining,weusuallyfindthatparentsandcaregiversintheroomhaveexpertisethatisvaluableforothers,andwewillencourageyoutoprovideinputandcoacheachotherasyouworkondevelopingyourstories.

Reviewagenda–refertoflipchart

A. Today’sagenda:1. Welcome2. Introductions3. Whatmakesagoodstory4. Definingyourissue

Lunch5. Preparingyourstory6. Practiceandself-evaluation7. Sharingwiththegroup8. Trainingwrapupandevaluation


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B. Groupguidelines • Ourgoalistocreatearelaxed,butfocusedatmosphere.• Thereareboundtobealotofstoriesandinterestssharedtoday.Weaskthatyoushare

the“airtime”andthatyoukeepwhatyouhearheretodayconfidential.• Tomovethroughtheagenda,wehaveclearlydefinedtimeswhenwe’llneedtomove

ontothenextitem.Thismeanswemayneedtoendgreatconversationsattimes.• Weallhavedifferentstrengthsandexperiencewithspeakinginfrontofpeople,andthe

greatthingaboutagrouplikethisyouareinaroomfullofparentswhoarerootingforyou!Thebestwaytopracticeforthefirsttimeiswithpeoplewhoareonyoursideandwantyoutosucceed.

C. Meetinglogistics:• Thankyousomuchtoourhost!• Cellphones• Pleaseaskquestionswhenyouneedtoandfeelfreetogetupandgetcoffeeorgoto

thebathroomwhenneeded.• Privacy• Haseveryonecompletedthepre-survey?


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Section2-Introductions 20minutesLeaders:Oneco-facilitatorleadstheintroductionsandtheotherwritesdowntheresponsestoiiionaflipchartforthegrouptoreferbacktoduringthewrapup.Thentellthegroupthattheywillintroducethemselvesbyverybrieflysharingtheir:

• Name• Family/child/diagnosis• Whatisonethingyouwanttolearnfromthistraining?

Howmanyofyouhaveadvocatedforyourchild(i.e.atschool).Howmanyofyouhaveadvocatedforchangeintermsofpolicyorsystemlikeschoolsorthehospitalorlegislature?


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Section3–Whatmakesagoodstory? 30minutes

Whatisastory?Fortoday’straining,whenweusetheterm“story”wemeanashort,succinctpresentation(ordocument)thatconveysanexperience,feedback,requestorsuggestionthatyouaresharing.Thiscouldbefor:

• Makingachangeinasystem,processorpractice,• Influencingapolicyorlaw,• Askingforfundingforanewprogram,ortopreserveanexistingprogram.

Examplesofhowpeoplesharetheirstoriesinclude:

• Presentingatahearingorforum• Presentingatameeting• Sittingonapanelpresentation• Askingforfunding• PresentingataPTAmeeting

Whyshareastoryforadvocacy?

• Listeningtoanargumentorstatisticsmakesusacritic(lookforwaystopokeholes);listeningtoastorymakesusaparticipantandinvitesreceptivity.Weassociatewiththeexperienceratherthancritiqueitordefendagainstit.

• There’sanempathicconnectionwhenyouseeyourselfintheother.• Thelistenercanrealizetheyhavethingsincommonwithyou.• It’saneffectivewaytocrossculturalbarriers.

Showvideoclipandthenleaddiscussion. Discussionquestions:#1.WhatmadeAdana’spresentationeffective?(Oneleaderleadsbrainstormandotherwritesonflipchart)Examplestomentioniftheydon’tcomeupindiscussion:

• Balancingpositiveexperienceswithopportunitiesforimprovement• Avoidingputtingpeopleonthedefensive**• Introducesyouandyourfamily.• Focusesononething**• Explainsyoursituation• Hasenoughdetailstomakeitinteresting• Includesonlyinformationthatrelatestothesituationoryourgoal**


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• Remindsthepolicymakerordecision-makerthatyouareaconstituent• Capturesyouremotionandpassionforanissue• Asksforaspecificactiontoaddressthesituation

#2.WhatactionwasAdanaaskingfor?Doesanyonehaveadifferentinterpretationofwhatshewasaskingfor?Makethepointthattherewasaclearactionitem.Usemechanicstorytoillustrateconcept.Let’ssayItakemycarintothemechanic.Iexplainthatmycarisnotworking.Iamfrustratedbecauseitismakingmemisswork,Icouldn’ttakemykidstoschooltodayandhadtocallmyneighbortotakethemandIdon’thavethemoneytorepairitrightnowbecauseIjusthadtopaymedicalbillsformychildandIjustdon’tknowwhatiswrongwithit.So,thisstorycouldprobablyelicitsomeempathyandsupportfromthemechanicwhichisnicebutitreallydoesn’tgetmewhatIneednortellherwhatIwant.IfinsteadIsay“Ihavebeenhavingtroublegettingmycartokeeprunning.Itstopsafterithasbeenrunningforabout5minutes.Ihavetrieddifferentgasandcheckingallthehoses.Wouldyouhavetimetolookatitandgetmeanideaofwhatitmightneedalongwithanestimatefortimeandcostbynoontoday?Nowthisissomethingthatthemechaniccanacton.Italsogivesyoubothastartingpoint.Shenowknowswhatyouareaskinghertodo.Thepointisyouarespeakingbecauseyouwantyourlistenertodosomethingnotjustsupportyou.#4.Howdidshebalanceherpersonalstoryaboutwhatherchildneedswithwhatisimportantforotherchildreninhercommunityandthegreatergood?#5.Sheismakingthepointthatthereisaproblemwithourparksrightnow.Whatstrategiesdidyouseeherusetosaytherewasaproblem,yetnotcomeacrossasattackingorcomplaining?#6.Ifyoucouldgivehersuggestionsforimprovement,whatwouldtheybe?


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Section4-DefiningYourIssue 45minutes

Introtosection:Thisactivitywillhelpyoudecidewhatproblemorissueyouwanttofocusontoday.Wewillbeusingaworksheettohelpyoudevelopyourissueandwalkthroughhowtouseitwithyou.Thenyouwillstarttofillitoutandthenwewillbreakforlunch.Wearen’tgoingtotakeabreak,buttherewillbesometimewhenyouallcanworkindividuallyonyourworksheet,andthatwouldbeagoodtimetogototherestroomifyouneedto.Let’stalkaboutwhatitlooksliketoadvocateforyourchildvs.advocatingforchildrenwithhealthconditionsorspecialneedsingeneral.Let’ssayinsteadofaskingforchangestoallplaygroundsinthecity,Adanawasaskingforanaidetobewithhersonatrecesstokeephimfromrunningoff.Thatwouldbeanexampleofpersonaladvocacyforherownchild.Thisisanimportantpointtomakebecauseourtrainingtoday,andadvocacyingeneral,isaboutmakingchangestobenefitallchildrenandfamilies,notjusttofixsomethingspecificforyourchild.Thisisthedifferencebetweenpersonaladvocacyandsystems-leveladvocacywhereyouarelookingforchangestoawholesystem.Onewaytocheckifyourfocusisonsystems-leveladvocacyiswhenyougettoapointwhereyouareaskingyourself,“Whyarethingsthisway?Thereoughttobealawagainstthis!”or“Thereoughttobealawtoprotecttheserightsormakesomethinginparticularhappen.”Youcancertainlyusetoday’smaterialstohelpyouclarifyyourissueandneedsforanissueimpactingonlyyourchild,butthatisn’tourfocustoday.Wearegoingtohaveyourfilloutaworksheet,butbeforeyoudo,wewanttotalkaboutAdana’sexampleusingtheworksheet.Havefourflipchartsheetspre-titledwith:

• Challengeorproblem?

• Howareothersaffected?

• Whatneedstochange?

• Whohasthepower?


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1.WhatisthechallengeorproblemthatAdana,herchild,andotherchildrenarefacing?Pleaseuse1-2sentences.2. Howdoesthischallengeaffectotherchildrenorfamilies?3. WhatdoesAdanasayaboutwhatchangesneedtohappen?4. Whohasthepowertomakeachange?Thingstoconsiderasyoustartyourownworksheet:

• Isitlikelythatthisproblemorchallengematterstootherpeople?• Aretherepossiblesolutionsforthisissueorisit“toobig”toaddress?Forexample,ifAdanawasaskingforachangeinallnationalparks,thatwouldrequireaverydifferentstrategyandadvocacywouldbeneededatthenationallevel,probablyinvolvingmultipleorganizationsrepresentingdifferentpeople,tomakeachange.• Areyouaskingformorethanjust“support”or“awareness?”

Teachingpoints:Someofthethingsyoucouldpotentiallyaskforinclude:

• Achangeinpolicyorpractice• Achangeinalaw(orrelatedtoaspecificpieceoflegislationunderdiscussion)• Fundingforanewprogramortocontinueanexistingprogram

#1Doesanyonehaveanyotherexamplesofthingstheywanttoadvocatefor?

It’simportanttoavoidaskingforsomethingvaguelike“supportforfamiliesofchildrenwithhealthconditionsordisabilities”ortosayyouwantto“raiseawareness”aboutatopic.Itisverydifficultforapolicymakerordecision-makertotakeactioninthatcaseandyoumayendupwithnothingmorethanapatontheshoulder!Providehandoutaboutself-disclosureandwhattoconsider.Beforeyoufilloutyourworksheet,thereareafewmorethingstoconsider:

• Doyoufeelcomfortablesharingyourpersonalexperienceandinformationaboutyourchildinpublicwhentalkingaboutthistopic?

• Doyouhavesomuchemotionaboutthistopicthatitwouldbehardforyoutotalkaboutitinpublic?

o Thisemotioncouldbesadnessorangeroranyotherstrongemotionthateithermakesithardforyoutotalkorcouldkeepyoufrombeingeffective.


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• Wouldyourchildand/orfamilyfeelcomfortablewithyouspeakingaboutthistopicinpublic?

o It’simportanttothinkaboutolderchildrenoradultsinparticularandhowtheywillfeelaboutwhatyouplantosay.

o Youmaywanttoconsideriftheyshouldhaveasayinwhatyouplantosay.o Oryoumaywanttoconsiderhowyoucanmakethestoryyousharebevery

focusedonyouasaparentandlessfocusedonyourchildorfamilymember’slifeandexperiences.

Ifyoufeeluncertainaboutanyofthesequestions,youmaywanttoworkonadifferentissuetoday.Or,ifyouthinkyouhavealotofemotionbutyouwanttogoahead,thenyoumaywanttopracticealotaheadoftime.Itcanbeveryhelpfultopracticewithanotherpersonbeforeyoushareitpublicly.Beforeyouallgoaheadwithyourworksheets,wewouldliketohaveseveralpeople(popcornstyle)whoalreadyhaveanideaaboutaproblemorchallengesharethemsowecandiscussitasanexample.Thisis#1onyourworksheet.Wesuggestthatyouconsiderwritingonesentenceaboutfamiliesingeneralandonesentenceaboutyourownfamily.Forexample:FamiliesofchildrenwithdevelopmentaldelayshavemanymoremedicalandtherapyappointmentsthanotherchildrenandneedMedicaidtocontinuetobefullyfundedtohelpwiththisfinancialburden.Inmycase,wehavephysicaltherapyandspeechtherapyeveryweekandwehavetosee3differentspecialistsatthehospitalacoupletimesayearandwecountonhavingMedicaidinsurance.DiscusstheexampleproblemstatementsHandoutworksheetandreviewinstructions#2Whoisaffectedbythisissueorwhowouldbenefitfromitbeingaddressed?Isitotherchildren?Otherfamilies?Teachingpoints:

• Iftheproblemyouwerethinkingaboutworkingontodaydoesn’taffectotherchildrenorfamilies,wewouldaskthatyouthinkofanotherproblemtoworkon.Youcouldstillusetheworksheettohelpyouplanfortalkingtosomeoneaboutapersonalissue,but


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ourgoaltodayistofocusonadvocacyforchangesthatwillbenefitotherchildrenandfamilies.

• Itisimportanttopickaproblemthatotherpeoplecareabouttoo.Otherwiseitwillbe

difficulttoconvincelegislatorsordecision-makerstotakeaction.#3Whatneedstochange?

• Whatneedstobedone?Changed?Improved?Donedifferently?Discontinued?• Themorespecificyoucanbethebetter.

Thinkaboutifyouareaskingfor:

• Achangeinapolicyorpractice• Achangeinalaw(orrelatedtoaspecificpieceoflegislationunderdiscussion)• Fundingforanewprogramortocontinuefundingforanexistingprogram• Other?

#4Whohasthepowertomakethechange?Itisimportanttohaveanideaofapossiblesolution,andthentobringyourissuetoapolicymakerordecision-makerwhocanactuallyaddresstheissue.Ifyoubringaproblemtosomebodyandit’soutsidethescopeoftheirjoborelectedoffice,thenit’sgoingtobefrustratingforbothyouandthepersonyouaretalkingto.Forexample,youdon’twanttogotothedoctorratherthanthemechanicwhenyouhaveaproblemwithyourcar!It’salsoimportanttothinkaboutthechainofcommand.

Togiveanexamplethatmanyofuscanrelatetoinourpersonallives,ifyouhaveaproblemwithyourchild’steacheryoualwayswanttostartwiththeteacherfirst,andthenyoumightgotothespecialeducationdirectorandfinallytothesuperintendentofpublicinstruction.Youwouldn’tstartwiththesuperintendentofpublicinstructionbecausetheywilljustsendyoutotheteacher–andtheteachercouldbeveryupsetthatyouwentovertheirhead.Ifyou’rehavingtroublethinkingaboutwhowouldhavethepower,thinkaboutwhatpartofyourchild’slifeisaffectedbytheproblem.Isitaschoolproblem,ahealthcareproblem,ahealthinsuranceproblem?Whoisinchargeofthesystemwhereyouareexperiencingthisproblem?Isthepersoninchargelikelytobewillingtomakeachangeorislegislationorlegalactionneeded?Forexample,ifyouarefightinganinsurancecompanyandnotmakingprogress,youmightneedtodosomeresearchonwhatthelawsorregulationsarethatapplytoinsurancecompaniesandconsiderifachangeneedstobemadeatthatlevel.)


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Youmaynotknowexactlywhothiswillbejustyet.Wecanhelpyoutodayifweknoworwecanjustmaketheassumptionthataparticularagencywouldhavethepower,andthenwecanreachouttotheArcorotherorganizationslatertoconfirm.Letusknowifyouwouldlikeustodothat.It’salsofinetocomeupwithafictionaldecision-makerwhoyouwanttobringyourissueto,justfortheworkshoptoday.Whatyoupracticetodaywillstillbehelpfulevenifyouhavetofigureoutwhotoshareyourissuewithlater.

Lunch:30minutesFacilitatorcuessecondAdanavideo.


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Section5-Preparingyourstory 45minutes

Explainthatthenextstepistoworkonyourstory–whatyouwillactuallysaytoapolicymaker.PlaythesecondvideoofAdana.Inviteanycommentsaboutthesecondvideo.PlaytheNPRclip“Adviceforyourdinnerpartystories:KeepitFamiliar”Discussion:brainstorm–“Whataresomecharacteristicsofagoodstory?”ThisdiscussionwillbesimilartothediscussionaboutwhatmadeAdama’sstoryeffectivebutitwillserveasarefresherrightbeforetheystartwritingtheirownstories.Thenprovideinstructionsaboutsteps1-3ontheworksheet–telltheparticipantstoonlylookatside1ofthehandout.

• Thefirststepistotransferyourone-sentenceissueinto#3onthisworksheet.Itmayfeelmorenaturaltostartwithyourissueorproblem,butthatis#3onthisworksheetbecausewhenyouaretalkingtoapolicymakerordecision-makeryouneedtostartwithyournameandwhatyouareaskingthemtodo–likevotingforapieceoflegislationorprovidingfundingforaprogram.

• Instructionsfor#2–whatdoyouwantyourlistenertoDO?Bespecificandsatethisrequestinonesentence;examples“Iamaskingyoutovotefor…”or“IamherebecauseIwantyoutochangethispolicy.”Whenpossible,it’sgreattothankyourlistenerforsomethingtheyhavedoneinthepastthatyouappreciate,likevotinginfavoroflegislation.

Allowtheparticipantstimetoworkontheirrequestandtheninviteeveryonetosharetheirrequest(#2)andtheirproblem(#3).Discussasagroupandbrainstormaboutrevisionstotherequestandproblemifnecessary.Continuewithinstructions.

For#4,trytoshareaspecificstorythatwillhelpyourlistenerrelatetoyouandyourfamily.Ifpossible,shareapositiveexampleofwherethingswentwellandwhyyouwantotherstohaveasimilarexperience,ratherthananegativeexample.Itismoreeffectivetoinspireyourlistenerthantocriticizethem.Beverycarefulabouthowyoutalkaboutproblemsthatyouhavefaced.Ifyouaregoingtoshareanegativeexperience,makesureitdoesn’tsoundlikeyouareaccusingyourlistenerofbeingresponsiblefortheproblem.


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Youmayfindthat#5isalreadycoveredinwhatyouwrotefor#4,andifsoyoudon’tneedtowritemorefor#5.It’simportanttomakesuretoincludenotonlywhytheproblemissignificantandhowitaffectspeople,butalsowhythesolutionyouproposewouldmakeadifference.

Trytoframeyourcommentsabouttheresultsthatcouldbeachievedintermsofsomethingthatyourlistenerwillvalue–forexample,Adanaexplainedhowhersuggestionofevaluatingthetrueaccessibilityofparkswithstakeholdersandimplementingsolutionstoimproveaccessibilitywouldresultinbenefitsforchildrenwithdisabilitiesintermsofthemdevelopingandmaximizingtheirpotentialandalsofortypicallydevelopingchildrenwhowouldlearnaboutinclusionandrespectforothersintheircommunity.Shealsoexplainedthatplayisarightforchildrenbecauseitis“theirwork”asMr.Rogerssaid-notaprivilege.

#5isprovidingthefinalreasonswhyitisimportantforyourlistenertotakeaction.Thisisthebeginningoftheendofyourconversation,soyouneedtothinkabouthowitwillleadintoafinalstatementaboutwhytheactionyouarerequestingisneeded.

Itmayseemlike#6iseasy,butyoudoneedtogivesomethoughttohowyouwillconnecteverythingyoujustsaidin#4and#5backtotheactionyouarerequesting.Forexample,Adanausedatransitionphrase“Withallthisinmind,Iwouldliketoaskyouto…”

Incorporateapauseafter10minutes:Doesanyonehaveanyquestionstoasknow?Discussasgroupandthenkeepworking


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Section6-Practicewithapartnerandmakerevisions 15minutes

Nowyoushouldhaveagoodfirstdraftofyourstory.Wearegoingtopracticeinpairs.Eachpersonwillhave2-3minutestopresenttheirstorytotheother.Youwillbothcompletetheevaluationsheettohelpprovideeffectivefeedback–thepersonsharingthestorywilldoitasaself-evaluation.Thenswitch.Makenotesaboutanythingyouwouldliketododifferentlyinthenextpracticeround.Announcehalfwaypointtoletattendeesknowitistimetodoself-evaluationandswitchwhoisspeaking.

Section7-Sharinginthewholegroup-40minutesInvitevolunteerstogivetheirsamplepresentations.Referbacktotheflipchartfromthemorningwithideasaboutwhatmakesapresentationeffectiveandaskthegrouptoprovidesuggestionsorcommentsbasedonthatlistaboutwhatmakesapresentationeffective.

Section8-Wrap-upandevaluations-20minutesGroupdiscussion:Westartedbyaskingeveryoneforonethingtheywantedtolearntoday,andnowwe’dliketoaskeachofyoutoshareonethingyoulearnedtoday.(Scribewhatpeoplelearnedandkeepfortrainingdata)

Pleasecompleteevaluationsbeforeyougo.Thiswillhelpusimprovethetraininginthefuture.Youwillalsoseethatweareaskingsomepersonalquestionsaboutyourage,yourrace/ethnicity,whetheryouareamomoradad,andsoon.Thereasonwhyweareaskingisbecausewewanttokeeptrackofwhetherweareincludingparentswithdifferentsituationsandcharacteristicsinthesediscussions.It’shelpfultoustokeeptrackofthecharacteristicsofparticipants,butit’sOKtoskipthemifyoudon’twanttoanswerthem.


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PreandPostEvaluations


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Pre-Training Evaluation: Telling Your Story with a Purpose

The Department of Health and Seattle Children’s Center for Children with Special Needs designed this training to support parents and caregivers of children with special needs who would like to participate in advocacy activities to share the perspective of families of children with special needs. Your feedback on this anonymous survey will help us improve the training for future participants. We ask questions about your background because our goal is to provide training to parents and caregivers of different ages, backgrounds and levels of advocacy experience. Please complete the first page before the training. 1. Please share how much you agree or disagree with these statements. (For each statement, circle the

number that best describes your opinion.) Not

confident Not very confident

Somewhat confident

Very confident

I know what points to include when sharing a personal story or experience in public to advocate for changes in policies or systems.

1

2

3

4

I can explain effectively to my listeners why they should take action on what I propose.

1 2 3 4

I feel well-equipped to make decisions about what to share in public while respecting the privacy of my child and my family.

1 2 3 4

I can identify at least one personal story that I would like to share to advocate for changes in policies or systems.

1 2 3 4

If I wanted to go out and share my story to advocate for changes in policies or systems, I have ideas about what I could say.

1 2 3 4

I have tools to provide negative feedback or share negative experiences in a way that will help others be open to my ideas.

1 2 3 4


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Post-Training Evaluation: Telling Your Story with a Purpose

Please complete the next pages after the training. 1. Please share how much you agree or disagree with these statements. (For each statement, circle the

number that best describes your opinion.) Not

confident Not very confident

Somewhat confident

Very confident

I know what points to include when sharing a personal story or experience in public to advocate for changes in policies or systems.

1

2

3

4

I can explain effectively to my listeners why they should take action on what I propose.

1 2 3 4

I feel well-equipped to make decisions about what to share in public while respecting the privacy of my child and my family.

1 2 3 4

I can identify at least one personal story that I would like to share to advocate for changes in policies or systems.

1 2 3 4

If I wanted to go out and share my story to advocate for changes in policies or systems, I have ideas about what I could say.

1 2 3 4

I have tools to provide negative feedback or share negative experiences in a way that will help others be open to my ideas.

1 2 3 4

2. Please share how much you agree or disagree with these statements about today’s training. (Circle

one number for each statement.) Strongly

disagree

Disagree Agree Strongly agree

I felt comfortable sharing ideas.

1

2

3

4

I felt comfortable asking questions.

1 2 3 4

The group had open discussions about the material.

1 2 3 4

The information provided was useful to me.

1 2 3 4


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3. What was the best part of the training? 4. What suggestions do you have for improving the training?

5. What other leadership training topics are of interest to you? (Please check all that apply.) □ Advocating with your story □ Facilitating supportive conversations □ Advocating with local or state government □ Working collaboratively in teams □ Building partnerships or coalitions □ Leading an effective meeting □ Negotiation

□ Managing conflict □ Discovering your advocacy skills and strengths □ Developing advocacy strategies to address community issues □ Understanding different styles of learning, working and leading □ Other:___________________________

6. Have you ever participated in advocacy activities (eg. meetings, committees) where you were representing the perspective of families of children with special needs in general (excluding activities for your own child, like your child’s Individualized Education Program [IEP] meeting or doctor’s appointment)? □ Yes □ No ! Go to question 8

7. If Yes: How many times have you participated in this kind of advocacy activity in the past year? □ 1 time □ 2-5 times □ More than 5 times

8. Is it likely you will participate in advocacy events, meetings, or activities in the future?

□ Yes, very likely □ Yes, somewhat likely □ No, not very likely □ No, not at all likely

9. What is your relationship to a child with a special need?

□ Mother □ Father □ Other family member □ Other 10. How old are you? □ 18 to 25 □ 25 to 35 □ 35 to 45 □ 45 to 55 □ 55 or older

11. What is your race/ethnicity? (Please check all that apply.) □ African American/Black □ Latino/Hispanic □ Caucasian/White □ Asian □ Native American □ Prefer not to identify □ Pacific Islander □ Native Alaskan □ Other:____________________

12. What is the highest level of education you have completed?

□ Junior high □ High school □ Some college □ College □ Graduate degree


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Handouts


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TellingYourStorywithaPurpose

QuestionstoaskwhenyouareinvitedtotellyourstoryGatherinformationtohelpprepareandknowwhattoexpect:• What’sthepurposeofthemeetingorevent?• Whatpartofmystorydotheywanttohear?• Isthereamessageyouwantmetoleavetheaudiencewith?• When,where,howlongdoyouwantmetospeak?• What’stheformatofthemeeting?• Whoistheaudience?Howmanypeoplewillbethere?• Willtherebeotherparentsthere?• What’simportantformetoknowaboutthisgroup?• WhatkindsofthingsshouldIprepareorthinkaboutbeforehand?• HowlongwillIhavetotalkorsharemystory?• Isthereastipendorpaymenttocovermycosts?Questionstoaskyourself

• WhatamIwillingtoshare?• WhatdoIfeelistooprivatetoshare?• Whatdoesmyfamily(orchild)notwantmetotalkabout?• Whatwillmystoryteachthoselistening?• HaveIhadanegativeexperiencethatisstillbotheringmethatwillbedifficulttoshare

inaconstructiveway?• DoIhavethetimeforthis?• Doesmystorymatchthetopic?• DoIwanttodothis?

Planninginformationtocheckon:

• Whoismycontact?• WhatshouldIwear?• Whatisthemeetingroomnumber?• WheredoIpark?• Ifthisisapanelpresentation,makesurethereisatimetoheartheotherparent’s

storiesbeforethepanel.AnticipateQ&A’sandpracticeanswersasapanel.Afterthemeetingoractivity:Connectwiththepersonwhoinvitedyoutotheeventormeeting.Checkinwiththemandletthemknowhowitwentandanyissuesthatcameuporquestionsyouhad.


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Thingstothinkaboutwhendecidingifyouwanttoshareyourstory

1. Youhavesomedistanceandperspectiveonyourexperiencevs.beinginthemidstofitorstillactivelyworkingthroughit.

2. Thestoryhasbenefitforothers.It’snotaboutyourpersonalagenda,frustrationor

currentissue.

3. Youfeelreadytoshareit.Trustyourinstincts.Sharepartsoftheexperiencethatyouarereadyfornow—youdon’tneedtotellitall.

4. Youarerelativelycomfortabletalkingaboutyourexperience.It’snotatyourexpense—

youdon’tfeeloverlyvulnerable,exposedorshamed.Guidelinesforself-disclosurewhenpresenting

1. Staywiththefocusofyourmessage—lessisusuallymore.

2. Protecttheprivacyofothers.


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AdviceforYourDinnerPartyStories:KeepItFamiliar

FromNPRMorningEdition

There'sadifferencebetweenthestorieswetellandthestoriesweliketohear.Newsocialscienceresearchfindsmostofusliketolistentostoriesaboutfamiliarthings.

DavidGreen:Host

OK,Iwantyoutothinkaboutthelasttimewhenyouwereatadinnerpartyandyouweretellingastorytoyourfriends.Maybeyouweretalkingaboutthatexoticvacationyoujustgotbackfrom,maybeabrandnewmovieyousawthatnooneelsehadseen.Well,there'ssomenewsocialscienceresearchsuggestingthatyoumightbebetterofftalkingaboutexperiencesthatyouraudiencealsohashad.Andtounderstandwhythisis,wearejoinedbyNPR'ssocialsciencecorrespondent,ShankarVedantam.Hey,Shankar.

ShankarVedantam:HeyDavid

Greene:Sowhat'swrongwithtalkingaboutamovieyou'veseenthatnooneelsehasseen?Isthataproblem?

Vedantam:Well,itkindofisaproblem,David,becausewhathappensveryoftenwhenyoudothatisthatyouleaveyouraudiencewithblankstares.IwastalkingwithpsychologistDanGilbertatHarvard...

Greene:Andyoudon'twantthat.Youneverwantatablefullofblankstares(laughter).

Vedantam:(Laughter)Gilberttoldmethatpeoplewhotellyouaboutamoviethatthey'veseenthatyouhaven'tseenoftenendupconfusingyou.

DanGilbert:Theysay,oh,there'sthisguy.He'sadetective,andhelivesinNewYork.Andhe'sgotthisgirlfriend.Andthentheygotothisplace.Andyou'rejustthinking,what,what,who?Sowegetlostveryquicklywhenotherpeoplearespeakingbecausemostpeoplearenotparticularlytalentedattellingstories.

Greene:OK,Igottotallyconfusedwhenhewasdescribingthatmovie.SoisthisaproblembecauseI,asalistener,amsortofjusttotallyleftout?

Vedantam:That'sright.Now,it'salsopossiblethatenvymaybeapartofthis.Ifyoutellme,David,thatyou'reofftoMauitomorrow,Imightendupfeelingenviousofyou.Andsothatearlierresearchhasactuallyshownthatonereasonthatstoriesaboutexperienceswehaven't


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hadarelesssatisfyingtousisthattheycanleaveusfeelingleftout.ButwhatGilbertandhiscolleaguesGusCooneyandTimothyWilsonarefindinghereisadifferentphenomenon.Acommonassumptionthatbothstorytellersandlistenersaremakingturnsouttobewrong.

Gilbert:Speakerstendtothinkthatlistenerswillmostenjoyhearingnovelstories-thatis,storiesaboutexperiencesthelistenershaven'thad.Andthatmakesperfectlygoodsense.Wethinkofcommunicationasanattempttotellpeoplethingstheydon'talreadyknow.Butwhatourexperimentsrevealedwasthatlistenersactuallyfarpreferredtohearstoriesaboutexperiencestheyhadalreadyhad.

Greene:Shankar,howdidGilbertdoexperimentshere?Didhehangoutathundredsofdinnerpartiesorwhat?

Vedantam:(Laughter).Well,hedidsomethingmucheasierbutlessinteresting,David.Heandhiscolleaguesexposedpeopletostoriesaboutnovelandfamiliarexperiences.Andwhattheyfoundisthatstoriesaboutfamiliarexperienceswereenjoyedmuchmorethanstoriesaboutnovelexperiences.Now,it'snotthatpeopledon'twanttohearaboutnewstories.Youknow,wegotomovies.Wereadbooks.Thereasonwedon'tenjoysuchstoriestoldbyourfriendsisthatstorytellingisreallyhard,andmostpeoplewemeetaren'tgreatstorytellers.

Gilbert:Mostofus,whenwetellstories,leaveallsortsofthingsout.Asaresult,ifourlistenersaren'talreadyfamiliarwiththetopicwe'retalkingabout,theygetlostreally,reallyquickly.

Vedantam:OneofthethingsthatGilbertrecommends,David,isthatatyournextdinnerpartyyoushouldspendlesstimetalkingaboutexperiencesthatonlyyou'vehadandmoretimetalkingaboutexperiencesthatyourlistenershavealsohad.Sowhenyoutalkaboutamoviethatyourfriendhasalsoseen,yourfriendisgoingtocompensateforyourweaknessesasastorytellerbyrememberingcontextandatmosphereandallthethingsthatmadethemoviememorableinthefirstplace.

Toputitanotherway,Gilbertsayswetendtothinkofstoriesasiftheyarefruit.Wethinkoldstoriesarerottenandshouldbeavoided.Hesaysit'sbettertothinkofstoriesasiftheyarewine.Theygetbetterwithage.


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Self-evaluation:preparingyourstory Yes,I

rememberedandrocked!

Oops,Iforgot!OR

Icouldimprove.Iintroducedmyself.

IstatedtheactionthatIwantedmylistenertotake.

Mylistenerhasthepowertotakeactiononthisissue.

Igaveapersonalexampleofwhythisisimportanttome.

Iexplainedhowotherchildrenorfamiliesareaffectedbythisproblem.

Iprovidedatleastonepositiveexampleorstory.

Ididn’tmakecommentsthatcouldmakemylisteneroraudiencefeelcriticizedorresponsiblefortheproblem.

IexplainedhowotherfamiliesorthecommunitywouldbenefitfromwhatI’maskingfor.

Irepeatedmyrequestattheend.

Ithankedmylistenerfortheirtime.

OnethingIwanttododifferentlynexttime:Onethingthatworkedwell:


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Peerevaluation:preparingyourstory Yes,my

partnerrememberedandrocked!

Oops,mypartnerforgot

ORcouldimprove.

Introducedherself/himself

Statedtheactionthattheywantedthelistenertotake.

Listenerhasthepowertotakeactiononthisissue.

Gaveapersonalexampleofwhythisisimportanttome.

Explainedhowotherchildrenorfamiliesareaffectedbythisproblem.

Providedatleastonepositiveexampleorstory.

Didn’tmakecommentsthatcouldmakemylisteneroraudiencefeelcriticizedorresponsiblefortheproblem.

ExplainedhowotherfamiliesorthecommunitywouldbenefitfromwhatI’maskingfor.

Repeatedrequestattheend.

Thankedlistenerfortheirtime.

Onethingtoconsiderdoingdifferentlynexttime:Onethingthatworkedwell:


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Worksheets


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Definingyourissue

1. Whatisthechallengeorproblemthatyou,yourchildoryourfamilyisfacing?Thinkofaproblemthataffectsotherchildrenandfamiliestoo.Considerwritingonesentenceaboutfamiliesingeneralandonesentenceaboutyourownfamily.

Forexample:FamiliesofchildrenwithdevelopmentaldelayshavemanymoremedicalandtherapyappointmentsthanotherchildrenhaveandneedMedicaidtocontinuetobefullyfundedtohelpwiththisfinancialburden.Inmycase,wehavephysicaltherapyandspeechtherapyeveryweekandwehavetosee3differentspecialistsatthehospitalacoupletimesayearandwecountonhavingMedicaidinsurance.2. Howdoesthischallengeaffectothers?(Orhowcoulditaffectothersifnothingisdoneto

addressit?)

3. Whatneedstochange?(Orwhatcanbedonetoimprovethesituation?)

4. Whohasthepowertomakeachange?


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PreparingYourStory

1.Whoareyou?Name:Cityortownyoulivein:Name,agesanddiagnosisofpeopleinyourstory(optional):2.WhatdoyouwantyourlistenertoDO?(Whatneedstobedonetoaddressyourissue?)

• Bespecificandstatethisrequestin1sentence-aimfor30wordsorless.Don'tjustaskfor“support;”provideaclearactionitem.

• Examples:“Iamaskingyoutovotefor…”or“IamherebecauseIwantyoutochangethispolicy…”or“Iwantyoutoprovidefundingforaprogramthat…”

• Whenpossible,youmaywanttostartbythankingthelistenerforsomethingtheyhavedoneinthepastthatyouappreciate(likevotingforabillorsupportingfundingforaprogram).

3.Whatisthechallengeorproblemthatyou,yourchildoryourfamilyisfacing?(Youcansimplycopyyourresponsefrom#1onthe“DefiningYourIssue”worksheethere.)


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4.Whyisitimportanttoyouandotherfamilies?Tellashortstory(in4-5sentences)abouthowthisissuehasaffectedyouandyourfamily.Ifpossible,useapositiveexample–asituationwherethingswentwellandwhyyouwantotherstohaveasimilarexperience–insteadofanegativeexample.Stopandcheck:Reviewyouranswersforcommentsthatcouldmakethelisteneroraudiencefeelcriticizedorresponsibleforproblemsyouhavefaced.5.Howcouldotherfamiliesorthecommunitybenefitfromwhatyouareaskingfor?Whatresultscouldbeachieved?5. Endbyrestatingyourrequestandthankingthemfortheirtime.

Whenpossible,thisisagoodtimetothankyourlistenerforsomethingtheyhavedoneinthepastthatyouappreciate(likevotingforabillorsupportingfundingforaprogram).

Telling Your Story with Purpose Final Curriculum 9-30-17with advocacy and telling your story, and...

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