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Workshop

Two

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WelcomeRound:Sharesomethingpositiveaboutyourselforyourfamilymemberwithadisabilitythathashappenedsincewelastmet.Reviewlastsession’swork:AddanynewinformationyoulearnedfromothersthatknowandcareaboutyourselforyourfamilymemberwithadisabilityThe5ValuedExperiencesgivesusalanguagetodiscussaperson’sdevelopmentandfocusesourattentiononthequalityofaperson’sexperiences.Itresultsinasharedsenseofdirectionandprioritywhichguidestheselectionofpersonalandserviceobjectivesandactivities,formstheessential linkbetweenplansandactionandprovidesthemeansforregularfollow-upandrevision.Itprovidesawaytogetthingsdone.Thosewhomakeimportantdecisionsaboutanotherperson’sfutureneedausefulvocabularyfordiscussingtheeffectsoftheirdecisionsonthequalityofthatperson’slifeexperiences.The5valuedexperiencesarehelpfulindescribingaperson’ssituation,identifyingopportunitiesforimprovement,andevaluatingthemeritofproposedactivities.Five related termsdefine thisway to lookat thequalityofaperson’s lifeexperiences. Eachpointstoexperiencesthatmakesenseforapersontoseekmoreof;togetherthey indicateabalanceof experiences thatmakeeffortworthwhile. History shows that peoplewith severedisabilitiesarelikelytomisstheseordinarypositiveexperiencesunlessthepeopletheyrelyonwork hard to provide them. These valuable experiences come from cooperation betweenindividualsandtheirallies.Theybringoutthequalityofallpeople’slivesbecausetheyaretheresultofpersonal investment, focusedattentionand learning throughaction; theycannotbemanufacturedthroughamechanicalprocess.(O’Brien2002)Everyone’sworldgrowsricherandmoreinterestingwhenpeoplehavemoreopportunitiesforthesevaluedexperiences.Belonging:Beingamemberofagrouporanassociationoracongregation;beingafriend;beingafamilymember;beingapartner.Havingavarietyofrelationshipsandmembershipsincludingassociationswithbothpeoplewithdisabilitiesandpeoplewithoutdisabilities,bothpaid,staff,volunteersandothercitizens.Beingrespected:Beingseenandtreatedwithdignity;beingseenandtreatedasawholeperson;beingseenandtreatedinwaysthathonourthebestinyourculture;beingseenandtreatedasapersonwithrights;beingseenandtreatedinwaysthatfityourage.Sharingordinaryplaces:Makingthesameuseofcommunitysettingsasanyothercitizendoes,atthesametimesandforthesamepurposesasothercitizensdo:living,working,learning,andplayingconfidentlyinordinaryplaces.Contributing:Makingapositivedifferencetootherpeople,tocommunitygroups,andtothecommunityatlargebydiscovering,developing,andgivingindividualgiftsandusingpersonal

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Choosing

capacities.Therearegiftsofbeingandgiftsofdoing:contributionscanincludeinterestedpresenceaswellascapableperformance;insomesituationssimplybeingpresentandinvolvedmakesarealdifference.Contributionscanbefreelygivenorearnpay.Choosing:Havingthefreedomandsupportandassistancetomakethesamesortsofchoicesasotherpeopleofyourageandtolearntomakewiserchoicesovertime.Asanadult,makingbigdecisions(suchaswhereandwithwhomtoliveandwork)andsmallerdecisions(likewhattoeatandwhentogotobed).Atanyage,beingencouragedtouseandstrengthenyourvoice(inwhateverwayworksforyoutocommunicate),toclarifywhatreallymatterstoyou,tomakethoughtfuldecisions,andtolearnfromexperience.O’Brien,J.&LyleO’Brien,C.(2002,3rdPrinting).AlittlebookaboutPersonCentredPlanningInclusionPressActivity:Identifywhereandhow,inyourlifeoryourson/daughter/familymemberwithadisability,dothese5ValuedExperiencesshowup,rightnow.Thenidentifywhereandhowyouwouldlikethemtoshowupinthefuture.Putaboxorcirclearoundthedreamsforthefuture.

Belonging

BeingRespected

SharingOrdinaryPlaces

Contributing

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Thinkofoneaction,thatyoucoulddonow,thatwouldincreasetheopportunitiesfortheseValuedExperiencesinyourlifeorthelifeofyourson/daughter.Describethegoal–

Whatactionneedstobetaken Who When

Developingavision&valuesstatementWhywouldwedothis?Surelythatsoundslikesomethingpeopledoinbusinessorintheorganisationsthatsupportpeoplewithdisabilities?Whileyouwouldbeabsolutelycorrectinthinkingthis,familymembers&peoplewithdisabilitieshavesometimesfoundthatthissortofapproachcanreallyhelpthemwithintheirdailylives.Avisionisadreamorhopeofsomefuturestatethatwemayachieve.Itisthe‘bigpicture’&answersquestionssuchas:

• Whatisourlongtermgoaloraspiration?• Howdoweseeoursituationin2years’time?5years’time?• Whatisouridealfuturestate?

Avalueisabelieforconvictionthataffectsthewaywebehave.• Developingvaluesstatementhelpstoensureclarityaboutwhatisimportanttothe

familyand/orthepersonwithdisabilities.Thetruthisthatnoteveryonehasthesamevalues,whichmeansthatifwedon’tidentifytheseinthefirst,peoplecanassumethingsthatmaynotbecorrectorleadtootherproblemsatafuturetime.

Seepage24–26forawaytoworkoutwhatyourvaluesarerightnow.Whenyouhavewrittendownwhatyourbeliefs&valuesare,youshouldbeabletosay:‘Thisiswhatweareonabout.Thisunderpinseverythingwedo.Wecanseethisisreflectedinallthatwedo.’Thisisthesortofstatementthateveryonewhosupportsyoushouldbeabletoidentifywithaswell.Overtime,youwillbeabletoreviewthesestatementstoseeiftheyarestillcurrent&reflectwhereyouareuptoinlifenow.

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Thefollowingisanexampleofthesestatements:

VISIONSTATEMENTOur vision is that Jenny is continually enabled, in every possible way, to live a lifestyle shechooses,isusedtoandentitledto.OURVALUESOurvaluesfocusonJenniewithaparticularemphasison:• Herrighttomakeherowndecisionsinrelationtoherlifeandlifestyle• Thecontinualprovisionofsupportwhichenhancesherqualityoflife• Her right toexperience risk,withinanenvironment thatensures thather safety is also

safeguarded• Ensuringthatherpersonaldignityisrespectedatalltimes• Jennyisaccordedthesamerespectasanyotherpersonofherageinhercommunity• Jennyhasvaluedroleswithinhercommunityandsocialnetworks• Being able to respond to Jenny’s changing needs, and plan for these changes where

possibleinadvance• BeingabletocontinuallyencourageinnovationanddiligenceamongstJenny’ssupporters

&toprovideappropriaterecognitionoftheimportantroleofthesepeopleinJenny’slife

Reference:Davis-Meehan,E.undated.ThePowerofPositivePlanning:AStrategicPlanningKitforEvenBetterServiceDelivery,CooksHill,NSW.

Activity:AQuickLookatYourValuesRussHarris:TheHappinessTrap(2010)

Valuesareyourheart’sdeepestdesiresforhowyouwanttobehaveasahumanbeing.Valuesarenotaboutwhatyouwanttogetorachieve;theyareabouthowyouwanttobehaveoractonanongoingbasis.Thereareliterallyhundredsofdifferentvalues,butbelowyou’llfindalistofthemostcommonones.Probably,notallofthemwillberelevanttoyou.Keepinmindtherearenosuchthingsas‘rightvalues’or‘wrongvalues’.It’sabitlikeourtasteinpizzas.IfyoupreferhamandpineapplebutIprefersalamiandolives,thatdoesn’tmeanthatmytasteinpizzasisrightandyoursiswrong.Itjustmeanswehavedifferenttastes.Andsimilarly,wemayhavedifferentvalues.Soreadthroughthelistbelowandwritealetternexttoeachvalue:V=Veryimportant,Q=Quiteimportant,andN=Notsoimportant;andmakesuretoscoreatleasttenofthemasVeryimportant.1. Acceptance:tobeopentoandacceptingofmyself,others,lifeetc2. Adventure:tobeadventurous;toactivelyseek,create,orexplorenovelorstimulating

experiences3. Assertiveness:torespectfullystandupformyrightsandrequestwhatIwant

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4. Authenticity:tobeauthentic,genuine,real;tobetruetomyself5. Beauty:toappreciate,create,nurtureorcultivatebeautyinmyself,others,the

environmentetc6. Caring:tobecaringtowardsmyself,others,theenvironmentetc7. Challenge:tokeepchallengingmyselftogrow,learn,improve8. Compassion:toactwithkindnesstowardsthosewhoaresuffering9. Connection:toengagefullyinwhateverIamdoing,andbefullypresentwithothers10. Contribution:tocontribute,help,assist,ormakeapositivedifferencetomyselforothers11. Conformity:toberespectfulandobedientofrulesandobligations12. Cooperation:tobecooperativeandcollaborativewithothers13. Courage:tobecourageousorbrave;topersistinthefaceoffear,threat,ordifficulty14. Creativity:tobecreativeorinnovative15. Curiosity:tobecurious,open-mindedandinterested;toexploreanddiscover16. Encouragement:toencourageandrewardbehaviourthatIvalueinmyselforothers17. Equality:totreatothersasequaltomyself,andvice-versa18. Excitement:toseek,createandengageinactivitiesthatareexciting,stimulatingorthrilling19. Fairness:tobefairtomyselforothers20. Fitness:tomaintainorimprovemyfitness;tolookaftermyphysicalandmentalhealthand

wellbeing21. Flexibility:toadjustandadaptreadilytochangingcircumstances22. Freedom:tolivefreely;tochoosehowIliveandbehave,orhelpothersdolikewise23. Friendliness:tobefriendly,companionable,oragreeabletowardsothers24. Forgiveness:tobeforgivingtowardsmyselforothers25. Fun:tobefun-loving;toseek,create,andengageinfun-filledactivities26. Generosity:tobegenerous,sharingandgiving,tomyselforothers27. Gratitude:tobegratefulforandappreciativeofthepositiveaspectsofmyself,othersand

life28. Honesty:tobehonest,truthful,andsincerewithmyselfandothers29. Humour:toseeandappreciatethehumoroussideoflife30. Humility:tobehumbleormodest;toletmyachievementsspeakforthemselves31. Industry:tobeindustrious,hard-working,dedicated32. Independence:tobeself-supportive,andchoosemyownwayofdoingthings33. Intimacy:toopenup,reveal,andsharemyself--emotionallyorphysically–inmyclose

personalrelationships34. Justice:toupholdjusticeandfairness35. Kindness:tobekind,compassionate,considerate,nurturingorcaringtowardsmyselfor

others36. Love:toactlovinglyoraffectionatelytowardsmyselforothers37. Mindfulness:tobeconsciousof,opento,andcuriousaboutmyhere-and-nowexperience38. Order:tobeorderlyandorganized39. Open-mindedness:tothinkthingsthrough,seethingsfromother’spointsofview,and

weighevidencefairly40. Patience:towaitcalmlyforwhatIwant41. Persistence:tocontinueresolutely,despiteproblemsordifficulties42. Pleasure:tocreateandgivepleasuretomyselforothers43. Power:tostronglyinfluenceorwieldauthorityoverothers,e.g.takingcharge,leading,

organizing44. Reciprocity:tobuildrelationshipsinwhichthereisafairbalanceofgivingandtaking45. Respect:toberespectfultowardsmyselforothers;tobepolite,considerateandshow

positiveregard46. Responsibility:toberesponsibleandaccountableformyactions47. Romance:toberomantic;todisplayandexpressloveorstrongaffection

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48. Safety:tosecure,protect,orensuresafetyofmyselforothers49. Self-awareness:tobeawareofmyownthoughts,feelingsandactions50. Self-care:tolookaftermyhealthandwellbeing,andgetmyneedsmet51. Self-development:tokeepgrowing,advancingorimprovinginknowledge,skills,character,

orlifeexperience52. Self-control:toactinaccordancewithmyownideals53. Sensuality:tocreate,exploreandenjoyexperiencesthatstimulatethefivesenses54. Sexuality:toexploreorexpressmysexuality55. Spirituality:toconnectwiththingsbiggerthanmyself56. Skilfulness:tocontinuallypracticeandimprovemyskills,andapplymyselffullywhenusing

them57. Supportiveness:tobesupportive,helpful,encouraging,andavailabletomyselforothers58. Trust:tobetrustworthy;tobeloyal,faithful,sincere,andreliable59. Insertyourownunlistedvaluehere:60. Insertyourownunlistedvaluehere:

Onceyou’vemarkedeachvalueasV,Q,N(Very,Quite,orNotsoimportant),gothroughalltheVs,andselectoutthetopsixthataremostimportanttoyou.Markeachonewitha6,toshowit’sinyourtopsix.Finally,writethosesixvaluesoutbelow,toremindyourselfthisiswhatyouwanttostandforasahumanbeing.Activity:Usingthe5ValuedExperiencesasaguideforyourvisionstatementandtheabovevaluesactivityasaguidetoyourvaluesstatement.Developyourown/yourson/daughterwithadisabilitiesVisionandValuesStatement.

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CommunicationExpressive–WhatamIcommunicatingtoyou?ADHC,(2012).LifestylePlanningPolicyVersion1.1AccommodationSupportDirectorate,Family&CommunityServices,ADHC-http://www.adhc.nsw.gov.au/publications/policies/policies_a-z/?result_237652_result_page=LThe‘WhatamIcommunicatingtoyou?’charthelpsusunderstandwhatthepersonwithadisabilityistryingtotelluswhentheirspeechisunclear,ortheydon’tusewordstocommunicatesotheycommunicatemoreclearlywiththeirbehaviour,orwhenwhattheysayisnotnecessarilywhattheymean.The‘WhatamICommunicatingtoyou?’chartshouldhelpanynewperson–intheperson’slife-togetofftoagoodstartgettingtoknowtheperson.Thechartisnotjustforpeoplewhodon’tusewordstocommunicate,althoughtheyarecertainlyverypowerfulforthesepeople.Manypeoplewhohavebeeninvolvedwithservicesforalongtimehavelearnttosaywhattheythinkpeoplewanttohearratherthanwhattheyreallymean.Also,sometimespeoplesayonething,butmeansomethingcompletelydifferent–doyoueversay‘I’mfinethanks’,evenwhenyou’rehavingaterribleday?Whenyoudothisotherpeopleinyourlifewhoknowyouwellwouldpayattentiontoyournon-verbalcommunicationandunderstandthatyouarenotokay.Capturinghowsomeonecommunicatesandusingthisinformationalsohelpsrelievethefrustrationfeltbythepersonwhentheyarenotunderstood.Italsomakesiteasierfornewpeopleintheperson’slifetogettoknowandunderstandthem.Whenthepersonhasonlyahandfulofwaysofcommunicatingtoothers,thismayneedtoberecordedmultipletimes,usingthefirstcolumntoclarifyhowdifferentsituationsordifferenttimesofdaymaychangethemeaningsoftheperson’sactions.Whenpeoplearestrugglingtounderstandhowsomeoneiscommunicating,referralsareoftenmadetospeechpathologistsorbehaviourclinicians.Wecanstarttorecordwhatweknowandactonitwhilewaitingforthespecialistsupport.Thiswillensureawealthofinformationforthespecialisttobuildon,andhopefullyfarlessfrustrationforthepersonearlyon.Tips:

• Startwithwhatthepersondoes,orwhatyouthinkthepersonistryingtotellyou,andthenfillintheothercolumns.

• Payattentiontorecordingdetailasthiscouldhaveabigroleinwhetherpeopleprovideconsistentresponsestotheperson.

• Youcouldalsousephotosorvideotocapturethisinformation,especiallyifwhatthepersondoesisdifficulttodescribeinwords.

Whenthisis

happening(orjusthappened)

Thepersondoesthis Wethinkitmeans Andweshould

ThemusicisonplayingahappysongHasbeensittingonthefloorformorethan40minutes

ScreamsloudlyScreamsloudly

JennyishappyandlikesthissongJennyisinpain,herbackishurting

Sing&dancewithher,enjoythemusicHelpJennymovetotheloungeorherwheelchairwhereshehasbacksupport

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Youcanalsocompleteacommunicationchartforyourselfandreflectonhowyoucommunicatewhenyouareindifferentmoods.Forexample,whenyouarehappy,whenyoureallylikeaperson,whenperhapsyoudon'tlikeaperson,whenyouareangryorfrustrated,whenyouaresad,whenyouarestressed.Howdoyourmoodsaffectyouinyourday?Yourself-awarenessaboutyourowncommunicationpatternsmayprovideinsightsthatcanhelpyoubeeffectivewheninteractingwithotherpeople.Activity:Completeanexpressivecommunicationchartforyourselforyourfamilymember/friendwithadisability

Whenthisishappening(orjust

happened)

Thepersondoesthis Wethinkitmeans Andweshould

CommunicationReceptive–Whatareyoucommunicatingtome?Receptivecommunicationchartsareforwhenweneedtohelpthepeopleunderstandsomething.Thesecommunicationchartsarehelpfulwhen:

• Apersonfindsithardtounderstandinformationwhenitisjustgiveninwords.• Particularwordsorwaysofsayingthings,canbeatriggertomakeapersonupset.

Thesecommunicationchartshelpustomakesureapersonisalwaystoldthingsinthewaythathelpsthemunderstandbest.Communicationchartsworkbestwhentheyarekeptsomewhereeasyforpeopletofindanduse,whenpeoplecheckthemregularly,makenecessarychangesandaddnewthingsthattheyhavelearned.Whencapturinghowbesttocommunicatewithsomeonethinkaboutthefollowing:-

• Dorealobjects,objectsymbolsorpictureshelptheperson’sunderstanding?• Doyouneedtogivethepersontimetoprocesswhatyouaretellingthem?Howlong?

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Aretherephrasesorwordsthatyoushouldavoidwiththeperson?Ifsowhatotherwordsoractionshelpcommunicatethesamemessage?Forexample,usinganynegativelanguagelikeno,stopordon’t,doesn’tworkwellfortheperson.Instead,peopleneededtofindaphrasethatcommunicatedwhattheywantedthepersontodo.Forexample,“John,pleasemoveawayfromthewater,”ratherthan“John,don’tgetinthewater!”Tips:

• Startwithwhatyouneedtoletthepersonknowandthedetailofhowtodothis,i.e.wordsandactions,andthenfillintheothercolumns.

• Payattentiontorecordingdetailasthiscouldhaveabigroleinwhetherpeopleprovideconsistentresponsestotheperson.

• Youcouldalsousephotosorvideotocapturethisinformation,especiallyifhowthecommunicationhappensisdifficulttodescribeinwords.

Atthistime Weneedtoletthepersonknow

Todothis Helpedorsupportedby

Immediatelybeforegoingshopping

Thatwearegoingshopping

ShowJennyaWooliesbag(theonewiththelogoonit)

Giveittohertotouch,whenshesmilesandlaughsitmeansreadytogoNOW!Don’tmakeherwait.

Activity:Completeareceptivecommunicationchartforyourselforyourfamilymember/friendwithadisability.

Atthistime Weneedtoletthepersonknow

Todothis Helpedorsupportedby

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DecisionMakingProfile:ADHC,(2012).LifestylePlanningPolicyVersion1.1AccommodationSupportDirectorate,Family&CommunityServices,ADHC-http://www.adhc.nsw.gov.au/publications/policies/policies_a-z/?result_237652_result_page=LDecisionMakingProfilesandDecisionMakingAgreementslookatwhatsupportsomeoneneedstomakedecisionsintheirlife,andensuresthattheyhaveasmuchpowerandcontrolaspossibleinhowthesedecisionsaremade.Formostofustomakegooddecisionsinourlives,werequiresupportfromothers.Thiscouldbeaskingwhatfamilyorfriendshavedoneinsimilarsituations,oriftheyhaveinformationthatmayhelpus,itcouldbetalkingthroughtheprosandcons,orhopesandfears.Veryfewpeopleare100%independentwhenmakingdecisions,andveryfewpeople(ifanyone)getalltheirdecisionsrightallthetime.Forpeopletobetheirownuniqueselves,theymusthavetheopportunitytoexercisetheirrightsandmakechoicesabouthowtheywanttolive.Tobeginwith,wemustlearnhowthepersoncanbestbesupportedtomaketheirownchoices.

DecisionMakingProfilescreatearecordof:• Howthepersonlikestheirinformation• Howtopresentchoice• Howtohelpthepersontounderstand• Thebesttimestomakeadecision• WhenisnotagoodtimetomakeadecisionHowtheperson

likestheirinformation

Howtopresentchoice

Howtohelpthepersontounderstand

Thebesttimestomakeadecision

Whenisnotagoodtimeto

makeadecisionWrittendownPicturesObjects

TakeplentyoftimeSitdownwithherinaquietspaceandpresentjusta2optionsatatime

Showmethepictures/objectatthesametimeastellingmeaboutitGivehertimetoprocess

WhenthingsarequietWhensheiscalmandrested

WhensheishungryWhensheisovertired

Activity:CompleteaDecisionMakingProfileforyourselforyourfamilymember/friendwithadisability.Howtheperson

likestheirinformation

Howtopresentchoice

Howtohelpthepersontounderstand

Thebesttimestomakeadecision

Whenisnotagoodtimeto

makeadecision

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ImportantDecisionstobemade:Formanypeoplewithdisabilities,evensmalldailydecisionsmaybemadeforthem,sotheirexperienceofchoosingmaybeverylimited.

Tobegintoaddressthis:• Listtheimportantdecisionsintheperson’slife.• Discussandthenrecordhowthepersonmustbeinvolved.• Discussandrecordwhomakesthefinaldecision.Overtime,thenumberandsignificanceofdecisionsthepersonmakesthemselvesshouldbegintoincrease.Whenpeoplestruggletointerprettheperson’scommunication,asaminimumpeopleshouldusecommunicationchartstopayattentiontowhatthepersonis‘saying’withtheirbehaviourandwhatisworkingornotworkingaboutthesituationorthedecisionsthatarebeingmade.Abestguessofwhat’sworkingornotworkingfromdifferentperspectivesisabetterwayofinvolvingthepersonthannotinvolvingthematall.(Seeworking/notworkingframeworkonday4)Whenpeoplehaveahistoryofmakingdecisionsthatchallengeothersorcontradictwhatkeepsthemhealthy,safeorvalued,alotofnegotiationmayberequiredifthepersonistoagreetoothersbeinglistedasmakingthefinaldecision.Rememberthereisnopointrecordingthingsthatthepersondoesnotagreewithandwillnotfollowthroughwith.Mostofusareparticularaboutwhowetakeorseekadvicefrom,sometimeslookingatwhobestsupportsthepersontomakedecisionsmaybehelpful.Importantdecisionstobe

madeHowthepersonmustbe

involvedWhomakesthefinaldecision

WhatclothestowearandfoodtoeatforthedayMedicationlevelsWhoJennyspendshertimewithWhereJennylivesandwhowith

ShowJennyanumberofappropriateoptionsE.gtosuitweather,activityortimeofdayDiscusswithJennyintheroomaskyes/noquestionstogetopinionShowJennyphotosaskhersimpleyes/noquestionsorusephotosshecanpointtoShowJennyoptions,mustvisit,lookaroundandexperienceoptions.Thenconfirmwithyes/noquestionsandphotosshecanpointto.

JennyDoctorsinconsultationwithJennyJennyJennyinconsultationwithherparents

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Activity:Completeanimportantdecisionstobemadechartforyourselforyourfamilymember/friendwithadisability.Importantdecisionstobe

madeHowthepersonmustbe

involvedWhomakesthefinaldecision

Thingstothinkaboutanddountilwemeetagainnextmonth:

1. Sharewiththepersonwithadisabilityandothersthatknowandcareaboutthem,the5ValuedExperiences,Vision&ValuesStatement,CommunicationandDecisionsMakingcharts-getfeedbackandcontribution.