ChoiceandControl*

Part1:Reflections

MichaelSmull

April2017

Weseektohaveasystemwherepeoplewhouselongtermservicesandsupportshavelivesoftheirownchoosingwithintheirowncommunities.Wewantasystemwheresupportisofferedtodevelopandmaintainthewebofrelationshipsthatdefines“community.”Foradults,wewantemploymenttobethenormandnottheexception1.Atthecore,wewanteveryonewhoisreceivinghomeandcommunity-basedservices(HCBS)tohaveinformedchoiceabout:

• Wheretheylive

• Whotheylivewith

• Whattheydowiththeirtime(includingwhotospenditwithandemployment)

• Whattheydowiththeirresources

• Who/whatentityprovidestheservicestosupportthechoicesthataremade

Itseemssimple.Everyonehaspreferences,likesanddislikes,thingstheywanttobepresentorabsentintheirlives.So,ifwelearnwhateachpersonwantstohavepresentorabsent,recordthelearning,anddescribehowitcanbeachieved,wehaveaperson-centeredplan.Supportthepersonindecidingwhoorwhatentitycanbestimplementtheplan,havestructurestocaptureongoinglearning,andyouhavesupportedpeopleinexercisingchoice.2

Butchoiceismuchmorecomplexthanthisimplies.Choiceisnotjustaboutpreferences,havingchoicewithcontrolishowwe:

• Givepurposeandmeaningtoourlives,creatingourownuniquedefinitionofbeingfulfilled;3• Developandmaintainthereciprocalrelationshipsthatsustainus• Createsupportiveenvironmentsforourselvesandmaintainthepracticeswithinthemthat

reflectourculture4

*Theopinionsinthispaperarethesoleresponsibilityoftheauthorbutthelearningthatinformedtheopinionsarefromparticipantsinourcommunityofpractice,theLearningCommunityofPersonCenteredPractices(www.tlcpcp.com),notableamongthemisMaryLouBourne.Muchoftheinformationontheboundariesofchoiceandmanagingriskreflectsherlearning.ThanksalsogotoCaitlinBaileyoftheNationalLeadershipConsortiumforthereferencesandthecommentarythatgoeswiththem.

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• Manageourdaytodaylivessothatwehavemoreofthemomentsthatmakeupgooddays,

fewerofthemomentsthatmakeupbaddays,andcancopewhenweexperiencelossorhaveabadday5

Andsupportingchoicerequiresthatwerecognizethat:

• Everyonehaspreferences,likesanddislikes,andthisistrueregardlessofthepresence,nature,orseverityofdisability,age,orcondition(s)

• Everyonecommunicatesthesepreferences,butsomecommunicatethemdifferently.Somepeoplecanonlycommunicatewiththeirbehavior6.Somepeoplehavegivenuptellingusasnoonehaslistened.Somepeoplehaveescalatedfromwordstobehaviorsbecausewedidnotactonwhatwewerebeingtold.Regardlessofhowpeoplecommunicateweneedtohavetheskillsandstructuresneededtolistenandactonwhatwehear.

• Questionsabouthowsomeonewantstoliverequireexplorationandreflection.Mostpeopleneedtobeengagedinaprocessofdiscoveryandexplorationbeforebeingableanswerquestionsabouthowtheywanttolive.Thisisparticularlyimportantforthosewhohaven’thadcontroloverthekeyelementsthatdeterminequalityoflife,havehadlimitedlifeexperiences,and/ordon’tknowwhatispossible7.Fortheseindividuals,astructuredprocessofdiscoveryfollowedbysupportaroundpossibilities,priorities,andtradeoffsisneededforinformedchoice.

• Somepeopleknowjustwhattheywantfromthelong-termsupportandservice(LTSS)system.Theyhavedonethereflectionwithoutsystemsupportanddonotwantorneedtoengageinanelaborateorevenasimpleprocesstoarriveatananswertheyalreadyknow.But,someareaskingforwhatisavailablewithoutknowingwhatispossible.Oneofthechallengesforthosewhoworkinthesystemistobeabletodistinguishbetweenthetwogroupsandtoofferassistancetothosewhowouldbenefit.

• Thosewhohavenothadcontrolorexperiencedalossofcapacityoftenneedtotrynewthingstodiscoverwhattheywant.Allofuslearnthroughtrialanderror.Mostofuscanthinkofsomethingwewerereluctanttotrythatturnedouttobeanimportantpartofourlives.Converselytherearethingswethoughtwewouldlovethatwedonotwanttorepeat.Forpeoplewithouttherelevantlifeexperiences,tryingandlearningisessential.

• Pasttraumamayimpactcurrentchoices.Wherewearelisteningtotraumasurvivorsweneedtotaketheimpactoftraumaintoaccount.8Forsomepeoplethatmeansunderstandingwhatasafeenvironmentmeanstothemandhelpingthemtogetit.Formanythereisaneedtohavegoodclinicalinputintohowweunderstandandhowwesupportthepersonsothattheyareinanenvironmentthatishealing.9

• Whatsomeonewantsmaypresentariskweshouldnotsupport.Thebestresponseisoftenmorecomplexthansimpleprevention.Thosewhoarepaidtosupportpeopleareexpectedtoprovidethesupportinawaythatassuresreasonablesafetywithoutundulyconstrainingchoice.Attheextremes,thisseemsclear.Apersonreceiving24-hoursupportwhowantstoliveincityandwalkbyherself,butdoesnotcrossstreetssafelywillhavepeoplewithher.(Andmayhaveagoaloflearningtocrossstreetssafely.)Butwhataboutpeoplereceiving24hoursupport

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whoseweightgainhasresultedinhighbloodpressureordiabetes?Whereistheboundarybetweenencouragingandcoercing?Dowehaveadeepenoughunderstandingofthepersonandher/hiscircumstances?Whataboutthosewhoseaggressionneedstobeconstrainedbutwhoareinasettingthatistoxicandisthesourceoftheaggression?Apartoftheessentialskillsetforthosewhoplanforservicesisbeingabletoassessnotjustseverityandnatureofriskbutthecomplexissuesthatgowithunderstandingandaddressingrisk.

Themoredependentthepersonisonpublicly-fundedservicesthegreaterthepotentialfornotbeinglistenedto,forlosingcontrol,forthesettingtobedeterminedbywhatisfundedandavailable,andforlifewithinthesettingtobedeterminedbywhatworksforthosedeliveringtheservices.10Butthisisnotthegoalortheintentionofthosewhomanagesystemsorthosewhoprovideservices.Tobesuccessfulweneedtounderstandthecomplexissuesembeddedinsupportingchoiceandhaveprocessesandstructuresthataddressesthem.Thisessayprovidesabriefoverviewoftheissuesandaprocess.

Whatdowemeanbyinformedchoice?

Supportingpeopleinhavinginformedchoicerequiresthat:

• Thepersonknowswhatsheorhewants,

• Thepersonknowswhatispossible,and

– Whatispossibleincludeswhatisdesirable

• Thepersonknowsandunderstandstherisksand“trade-offs”andhasbeenassistedinfindingthebestbalanceamongthem.

Choiceandboundaries

Choicehasboundariesforeveryone,sothequestionisn’t“arethereboundariesonchoice”butshouldtheboundariesonchoicebedifferentforthispersonwhoisusingservices?Andiftheansweris“yes”,howandwhyaretheboundariesdifferent?Aswelookforanswersweshouldkeepinmindthat:

• Restrictingchoiceisrestrictinglibertyandanyrestrictionbeyondthoseimposedonordinarycitizensshouldrepresenttheleastrestriction.11

• Evenwherethereisguardianshiporotherlegalarrangements,thereisanexpectationoftheuseofsubstitutedjudgmentandsupporteddecision-making12.Thereisanexpectationthatthelegalrepresentativelearnswhatthepersonwouldchooseandsupportsthatchoiceunlessthereisanissueofrisk.Eventhentheguardianisexpectedtohelpthepersonhaveasmuchofwhattheywerelookingforaspossible,withbestpracticebeingsupporteddecisionmaking.

• Themoredependentsomeoneisonpaidservicesthegreatertheresponsibilityoftheorganizationsprovidingtheservicesindiscoveringandsupportingchoice.Thosewhoplanandimplementplansneedtokeepinmindthatgreaterdependencedoesnotautomaticallytranslateintogreaterrestrictions.

• Wherethereisatensionbetweensupportingchoiceandassuringhealthandsafety,thethoughtfulresolutionofthattension(onethatdescribesaworkingbalancebetweenthem),ispartofthecoreofperson-centeredpractices.13

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Theboundariesonchoiceforallofusinclude:

• Thoseimposedbysociety

– Laws

• Oneoftheboundariesonourbehavioristhesetoflawsthatdescribewhattheboundaryisandthepenaltyforcrossingthatboundary.Wheresomeone’sdisability,age,orconditionismitigating,thelegalpenaltymaynotbeassessedbutthereareoftenotherconsequences(e.g.socialisolation,behaviorinterventionsorprogramsthatrestrictliberty).

– Expectations/values

• Eachsettingwithinacommunityhasasetofexpectationsthatthosewhowishtobevaluedfollow.Therearetypicallyexpectationsofdress,appearance,andbehavior.Theseexpectationsandvaluesvaryfromfamilytofamilyandculturetoculture.

• Ourpersonalvalues

– Ourexpectationsofwhatisandisnotacceptablebehavioraffectswhowewillspendtimewith,whatwedowithourtime,andhowweuseourresources14.

• Tradeoffs.Onechoicecreatesboundariesonotherchoices.

– Oneofthesignificantchallengesforallofusistherecognitionthatwecannothaveitall.Therearealwaystradeoffs.Mostchoices,oncemade,impactandoftenlimitotherchoices.Itcanbetheimmediatechoice(eatingdessert)thatimpactsonalonger-termchoice(losingweight).ItcanbeadislikeofcoldwintersandtheimportanceoflivingnearyourfamilyinMinnesota.Spendingmoneyononethingreducestheamountavailableforotherthings.Italsoinvolveslearning,aswhenaninitialcompromisebetweencompetingprioritiesisfoundtobelessthansatisfactory.Anditchangesovertime.Makingsignificantdecisionsandthecompromisesthatgowiththemisoftendonewiththesupportofsomeoneyoutrust.Forthosewhouseserviceshavingatrustedsupporterwhohelpsyoufindthebalancethatworksforyouisatthecoreofsupporteddecisionmaking.Itissupport,notcontrol,andthepersonatthecentermakesthefinaldecision.Someexamples-

• Ifitisimportanttoyoutolivenearyourextendedfamily,orwithpeoplewhoshareyourculture,thenthatcreatesboundariesonwhereyoulive.

• Peoplemaymovetotakeajoborbeneartheirplaceofemployment.Othersmaychoosetoundertakelongcommutessothattheycancontinuetoliveinadesired(oraffordable)place

• Peopletakeonresponsibilities(e.g.grandparentsraisingtheirgrandchildren,parentswhoaretheprimarysupportforadultchildrenwithdisabilities,children

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supportingagingparents)thattheyseeasmoreimportantthanthetimetheywouldhavehadforleisureortofulfillpersonalgoals.

• Resources

– Allofusmakechoicesaboutwhatwedowithourresourcesandexperiencethetradeoffsthatgowiththosechoices.Whenlookingatourincomeweknowthatspendingononethingmeanswedonothavemoneyforanother.Tohavetheincomeweseeasnecessarywemayworkmorethanonejobandreducethetimeforotherpursuits(anothertradeoff).Buttheresourcesavailabletousincludesmorethanmoney,itincludesthoseavailablefromfamily,friends,andfromourcommunities15.Whereweliveandwhowelivenearimpactsontheresourcesavailableforoursupport16.Whatfamilyandfriendsarewillingandabletoofferandhowthatbalanceswithourneedsisanotherresourceboundary.

• Ourindividualassessmentofreasonablerisk.

– Oneperson’sassessmentofexcessiveriskisanotherperson’sdefinitionof“real”fun.Whetheritisanassessmentofphysicalrisksuchasskydiving,bungeejumping,orswimmingwithsharks,oranemotionalrisksuchaspublicspeakingweeachmakeassessmentsorwhatconstitutesreasonablerisk.Weeachevaluateriskanditsimmediateorpotentialgainagainstourassessmentofconsequence.Doestheimmediatepleasureofdessertoutweightheshort-termconsequenceofgoingoffourdiet?Webalancegainandconsequence,usingourowncalculus,todeterminewhetherwewillfollowadvicethatreduceshealthrisks,suchassufficientexerciseorsleep,orabalanceddiet.

Peoplewithlongtermservicesandsupportneedshavethesesameboundariesonchoiceasdotypicalcitizens.ButthoseintheUSwhoarereceivingservicesfundedbytheCenterforMedicareandMedicaid(CMS)ashomeandcommunity-basedservices(HCBS)typicallyhaveadditionalboundaries17.CMSsaysthesettingmust:

• Beintegratedinandsupportaccesstothegreatercommunity

• Provideopportunitiestoseekemploymentandworkincompetitiveintegratedsettings,engageincommunitylife,andcontrolpersonalresources

• EnsuretheindividualreceivesservicesinthecommunitytothesamedegreeofaccessasindividualsnotreceivingMedicaidhomeandcommunity-basedservices

Forpeoplewhouseservicesoneofthecorequestionsisshouldtherebeadditionalboundaries?Thosewhoprovidetheservicesareexpectedtobothsupportchoiceandmitigaterisk.Weareaskedtodecidewhatconstitutesreasonablerisk.Wheredowesimplysupportchoice,wheredoweencouragealternatives,andwheredoweexertcontrol?Howweconsiderriskandhowwemitigateriskisaddressedbrieflyinwhatfollowsandindetailinaseparatepaper.

Consequences

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Choiceshaveconsequences.Someareimmediate,somearelongterm.Someenhancethequalityofourlivesandsomehaveanegativeimpact.Fortypicalcitizensthatrighttomakelegalchoiceswithbad,evenruinous,consequencesisunconstrainedbysociety.Theboundariesonchoiceimposedbysocietythroughstatutesarelargelypresentintheformoftheconsequencesthatoccurafterthechoiceismade.Thoseofuswhodriveoverthespeedlimitareriskingtheconsequenceofafine,increasedprobabilityofaccidents,andincreasedinsurancecosts.Consistentspendinginexcessofresourcescanresultinbankruptcy.Butforpeopledependentontheservicesystemthereisanexpectationthattheorganizationswillsupportchoicemakingwhilepreventingtheexerciseofchoicewheretherearepotentialharmfulconsequences.18

Whilewewanttopreventharmfulconsequences,wemustalsorecognizethatmuchofthelearningaboutchoicecomesfromhavingmade“bad”choices19.But,wewantittobelearning,nottrauma.Wherethereisrepetitionwithouttheexpectedlearning,weneedtounderstandthereasonforthelackofchangeinbehaviorthatreflectsthelearningweanticipated,anddetermineifthereisawaytohelp.Andallofthisneedstobebalancedwitheveryone’srighttomakebadchoices.Withindisability-basedservicesweoftenhearpeopletalkof“naturalconsequences”,whichalwaysreferstothenegativeconsequencesexperiencedaftermakinga“bad”choice.Whatisoftenmissedisthatthebehaviormayreflectbeingtrappedinasettingthatistoxictothepersonorthattheremaybelesspainfulwaysoflearningthatthepersonmissedbecauseoftheircircumstances.20

Trajectory

AsMichelle(Sheli)Reynolds,(oftheUMKCInstituteforHumanDevelopment)hasnoted,theconsequencesofmakingchoicesnotonlydeterminesthepresentbutitoftencreatesadirectionforthefuture,atrajectory21.ForpeoplewithIntellectualordevelopmentaldisabilitiesdecisionsthatleadtosegregatedsettingsearlierinlifemakeeffortstowardinclusivesettingslaterinlifelesslikelyandmoredifficult.Ifwewantpeoplewithsignificantdisabilitiestohaverelationshipswithinthebroadercommunityasadultsbeingininclusiveclassroomsasyoungchildrencreatesafoundationtobuildon22.Ifyouleaveschoolforworkincompetitiveemployment,thenhelpingyouleaveasegregatedworkortrainingsettinglaterisnotanissue23.Butitisnotonlythe“big”choicesitisalsoalltherecommendationsthatsetexpectationsthataremadebyprofessionalsthroughoutaperson’slife

QuantityandQualityofChoice

Thereisliteraturethatshowsthattoomanychoicesoverwhelmthepersonmakingthechoice.IntheParadoxofChoice,BarrySchwartz24notesthat

“…asthenumberofchoiceskeepsgrowing,negativeaspectsofhavingamultitudeofoptionsbeingstoappear.Asthenumberofchoicesgrowsfurther,thenegativesescalateuntilwebecomeoverloaded.Atthispoint,choicenolongerliberatesbutdebilitates.”(pg2)

Formostofus,inmostcircumstances,afewdesirablechoicesaresufficient.Buttheymustbedesirable,takingavegetariantoabutchershopisnotanacceptablewayofofferingchoice.Itisnotuncommoninsomesystemstobetoldthattheonlychoiceavailableiseitherthishousewithavacancyortobehomeless.Wherethehousematesarenotpeoplethepersonwouldchoosetolivewiththisisnotanacceptablechoice25.Thereistheotherextreme.Insomesystems,peoplewithdisabilitiesand

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theirfamilies,havereportedbeinggivenalistof50serviceprovidersandtoldthattheyneededto“choose”one.Withoutguidanceandsupportinmakinganinformedchoice,thosebeingaskedtochoosereportfrustrationandfearastheydon’thavetheinformationaboutthequalityofservicesofferedoraprocesstodeterminethebest“fit”.26

Choiceandculture

Wearesupportingchoice,inlargepart,tohelppeoplebeapartoftheirowncommunitiesandeachcommunityhasitsownculture.AsnotedbyChavisandLee27:

“Everycommunityisorganizedtomeetitsmembers’needs,buttheyoperatedifferentlybasedonthecultures,religions,andotherexperiencesoftheirmembers…Globalmigrationhasledtoanassortmentofcommunitiesbasedonpeople’sneedsanddesireforthatsenseoftrust,belonging,safety,andcaringforeachother.”

Culturehasadramaticeffectonchoicebutitsimpactcanbemissedifdisabilityistheforegroundandcultureisthebackground28.Supportingindividualchoicesaroundspirituallifeandcelebrationsisabeginningbuttheimpactofculturegoesbeyondboth.Americancultureemphasizesindividualchoiceandtheimportanceofautonomy.Otherculturesaremoredeferentialtocollectivechoice29.Howauthorityforchoicemakingisvestedalsovariesfromculturetoculture.Authoritycanbeprimarilywiththeperson,orwithparticularfamilymembers,orwithprofessionals.(SeeSheenaIyengar’sTedTalk:Theartofchoosing30)Wherethereisatensionbetweentheperson’sdesiresandthoseofkeyfamilymembersorprofessionals,whatconsiderationshouldbegiventoeach?Howshouldtheissuebeaddressed?Ifweonlylistentothepersonaboutachoice,whatwilltheconsequencesbe?Ifpartofwhatmatterstothepersonisbeingavaluedmemberofhisorherfamily,hisorhercommunity,thenwemustunderstandandaccountforthecultureoftheperson.Westillsupportthepersoninherorhischoicebutitneedstobeaninformedchoice.

Choicearchitecture

Howchoiceispresentedinfluencesthechoicethatismade.Thisisoftenreferredtoaschoicearchitecture31.Theexampleoftenusedisthatofparticipatinginaretirementsavings.Whennewhiresmustoptintobepartofplan,participationismuchlessthaniftheyhavetooptout.Salesofgumandcandyarehigheriftheyareplacedwhereyouwaitinthecheckoutline.32Howwepresentchoicesforthosewhouseserviceshasasignificantimpact33.Forthosewhohavespentyearsinsegregatedsettingsbeinginanintegratedsettingcanbeseenasapositiveopportunityorasafrighteningprospectdependingonhowitispresented34.

Whatneedstobeabsent

Partofwhatdrivesthedesireforchangeistheneedtoeliminateoravoidthingsthatthepersondislikes,findsirritating,orcannottolerate.Itisnotabouthavingaperfectlife.Thepresenceofsomethingsthatwedislikeisinevitableandpartofthetradeoffsthatwemakeinlife.(E.G.Almosteveryonewithapartnercandescribeaspectsofthepartner’sbehaviortheyfindirritating.)Butwhenwecannottoleratesomethingweseektochangeourenvironment.Manypeoplewithsignificantdisabilitiesorhealthchallengeshavefoundthemselvestrappedinsettingsthathadaspectsthattheystronglydisliked

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orcouldnottolerate35.Wherepeoplecannotchangethesettingtheirresponseis“non-compliance”whiletheresponseoftheservicesystemmaybeabehaviorprogramormedication(orboth)withthegoalofhavingthepersonconform36.Theresponseofthepersonwhofeelstrappedmaybeaggressionordepression.

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Part2-SupportingChoice–Aprocess

Firstaframework

IntheworkthatTheLearningCommunityforPersonCenteredPractices(TLCPCP)hasdonewehavefoundithelpfultouseaframeworkthatdividesissuesintowhatis“importantto”thepersonandwhatis“importantfor”theperson.

Whatisimportanttoapersonincludesthosethingsinlifewhichhelppeopletobesatisfied,content,comforted,fulfilled,andhappy.Itincludes:

• Peopletobewith/relationships

• Statusandcontrol

• Ritualsorroutines

• Thingstodoandplacestogo

• Rhythmorpaceoflife

• Thingstohave

Whatisimportantforincludes:

• IssuesofHealth

• Promotionofwellness(ex.diet,exercise)

• Preventionofillness

• Treatmentofillness/medicalconditions

• IssuesofSafety

o Environment

o Well-being(physical,emotional)

o Freefromfear

• Whatothersseeasnecessarytohelptheperson:

o Bevalued

o Beacontributingmemberoftheircommunity

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Learning–discovery,relativeimportance,andconnections

Wehavefoundthatthisframeworkworkswellasafocusforlearninganddescribingwhatmatterstoeachpersonandseparatingthatfromtheissuesofhealth,safety,orbeingvaluedthatmaynotmattertotheperson.Wehavealsolearnedthatwhilethiscanbeacriticalpartofsupportingchoice,adiscoveryprocessisneededtolearnwhatgoesintotheframework.Havingasetofquestions,waystoaskthem,andastructuretoorganizethelearninghelpspeopletorecognizeabroadrangeofthingsthatmattertothemandtheirrelativeimportance.Whiletheprocessandframeworkworkwitheveryone,itiscriticalforpeoplewhohavesignificantdisabilitiesorhealthconditions.Ifwearegoingtoengageinsupporteddecision-making,weneedtobeginwithhelpingthepersonsortwhatmatterstothemfromwhatmatterstoothers.37

Theconnectionsbetweenimportanttoandimportantfor

Noneofusattendtoourownissuesofhealthorsafetyunlessthereisanaspectthatmatterstous38.Unlessthereissomethingthatis“importantto”thatimpactsonwhatis“importantfor”uswedon’taddresswhatisimportantfor.Thedegreethatattendingtoanissueofhealthandsafetyimpactsonthewellbeingofthepersonthemoreimportantfindingtheconnectionis.Whenweaskpeoplewhytheystoppedsmokingwehearpeopledescribeissuesrelatedtotheirhealthbutwealsohearthattheyquitforavarietyofotherreason(e.g.concernfortheirchildren;cost;howitmadethemsmell).Peoplewhoexerciseregularlyoftenreporttheirmotivationsasbeinghowitmakesthemfeel,whotheydoitwith,orthepleasureofcompetition(evenifitiswiththemselves).Theyarepleasedwiththehealthbenefitsbutformanythatisnotwhytheyengageinhealthybehavior.Theonlydifferencebetweenpeopleusinglongtermservicesandsupportsandthegeneralpopulationisthedegreetowhichotherscan(orseekto)exertcontroloverthelivesofthepeopletheysupport.Ifyouwantsomeonetobettermanagetheirdiabetes,loseweight,exercise,orotherwisevoluntarilyengageinhealthybehaviorstheremustbeaconnectiontowhatmatterstothemthatisstrongerthanthegaintheygetfromtheunhealthybehavior.Theconnection,themotivation,maybedirectlyrelatedtotheissue-e.g.thosewhotellyouthattheytakethemedicationthatreducesthelikely-hoodofastrokebecauseastrokeissomethingthattheywishtoavoid.Alternately,theconnectionmayberemote.AnagencythatIworkedwithdiscoveredthatGreg,whodidn’tliketotakeimportantmedications,wouldnottakethemifyouwatched,butwouldtakethemifyouputthemout,ignoredthemedication,andtalkedsportswithhim.

Relationships

Mostofus,whenaskedwhatismostimportanttous,willreplywiththenamesoffamilymembersandthenourclosestfriends.The“family”maybetraditionalorconstructed,buttheyarethepeoplewhoaretypicallymostimportanttous.Nextareclosefriends.Thesereciprocal,caringrelationshipshavemuchtodowithourqualityoflifeandcreatesafetyinawaythatpaidrelationshipscannot.Itisrelationshipsthatdefinecommunity.39Thesearelargelystablerelationshipswhichhaveevolvedovertime.Theirdevelopmentrequiredtimespenttogetherinvaluedroles.Forpeoplewhohavelivedsegregatedlives,opportunitiestodeveloprelationshipsbeyondfamilyhaveoftenbeenrestrictedtootherpeoplewhouseservicesandtothosewhoarepaidtosupportthem.40Forallofusbuildingmeaningful,reciprocalrelationshipswithpeopletakesmorethanpresence.Weneedtogettoknow

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andappreciateeachotherovertime.Oneofthereasonstoemphasizeemploymentistheopportunityitpresentstodevelopstable,lastingrelationships.41

Forpeoplewhorelyonpaidrelationshipswealsoemphasizetheimportanceofmatching(andteachhowtodoitwell).Peoplewhocareaboutyouasapersonwilldoabetterjobofhelpingyouhavewhatisimportanttoyouandkeepyousafe.Whenapaidpersontakesyouintothecommunitytheywilldoabetterjobofintroducingyouwhentheyalreadyhavethingsthattheylikeandadmireaboutyouasaperson.

Control

Choicewithoutcontrolisaroadtodepression(oraggression).Withoutcontrol,choiceisjustalistofpreferences.Choiceandcontrolareboundtogetherandcontrolhasthesameboundariesandissues.Butcontrolisalsosomethingthatyoucandelegatetoothers.42Inourrelationships,weoftentelltheotherpersontochooseforbothus.Howmuchcontrolwedelegateandoverwhatvariesfrompersontopersonandrelationshiptorelationship.Butdelegatingcontrolisverydifferentfromsomeonetakingcontrol.Whenweacceptemployment,weacceptthatouremployerhassignificantcontroloverourworkbehavior.Butwithinexpectedboundaries.Whenwhattheemployerexpectsisnotacceptablewelookforotherwork.Delegatingcontroldoesnotneedtobeformalbutitdoesneedtobespecific(controloverwhat),voluntary,andrevocable.Whenpeopleneedsignificantsupport,thosereceivingthesupportwantcontroloverhowtheassistanceisgiven.Whenothersaregivenresponsibilitytomakedecisionsforus,wewantthemtolearnourpreferencesandmakethechoicesthatwewouldmakeifwehadcontrol.

Status

Seekingstatusistypicalhumanbehavior.Itcanbeyourplaceina“peckingorder,”beingaheadofothers.43Itisoftensomethingthatmakesyouproud,thatgivesyouapositivefeeling.Peopleroutinelycompeteinactivitiesthathavenoeconomicrewardwheretherewardisstatus.Thesenseofaccomplishmentandregardfromothers.Oneofthereasonsthatemploymentisimportantisthatpaid,competitiveworkconfersstatus44.Whilethereareaspectsofstatusthataregeneral(likeemployment)therearealsoaspectsthatareindividuallydefined.Whatcreatesstatusforonepersonmaynotbeperceivedasstatusforothers.Itcanbetheshoesyouwear,thecaryoudrive,whereyoulive,oryourbowlingscore.

Ritualsandroutines

Weallhaveroutinesandthoseroutinesthatmatterwerefertoasrituals.Wenoticetheirimportancewhensomethinghappenstodisturbthem.Theirimportancevaries.45Somepeoplefindthattheyareonlymildlyirritatedwhenaroutineisdisrupted,othersfinditverydistressing.Movingfromoneactivitytothenextofteninvolvesasmalltransitionritual.Changingclotheswhenwecomehomefromworkisanexample.Whensomeoneisdescribedas“havingdifficultywithtransitions”oneofthequestionstobeaskediswhetherthereisatransitionritualthatwillhelp.Whereritualsareimportanttheyneedtobeknownandhonored.Wheretheycannotbehonoredweneedtoknowhowtohelpthepersoncope

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andifithappenswithanyfrequencyweneedtoaskwhythepersonisinasettingwhereapartofwhatisveryimportanttothemisabsent.

Rhythmandpace

Mostofushaveapaceatwhichwemovethroughlife.Therearethosewhohatetoberushedandneedaleisurelypace.Thereareotherswhowantthingstohappenwithoutwhattheyseeaswastedtime.Therearetimeswhenwewantthingstomoveslowlyandtimeswhenwewantthemtobeoverassoonaspossible.Somepeopleare“nightpeople,”othersaremoremotivatedandenergeticearlierintheday.

Thingstodoandthingstohave

Howwespendourtimeisaoneofthecriticalthingsthatwewanttohavesomecontrolover.Whatweenjoydoingandwhatwedislikedoingneedstobeknownand,whereothershavecontrol,honored.46Weallhavepossessionsthatmattertous.Theymaybephotosoflovedonesorphotosthatdocumentimportanteventsinourhistories.TheymaybeseashellsthatrepresentamemoryofatriptothebeachTheymaybecollectionsorsingleobjects.Theymayalsorepresentthestatusthatcomesfromhavingasmartphoneorfitbit.Butwhatevertheyare,weneedtoknowaboutthemespeciallywherepeopleareatriskoflosingcontroloverwhereandhowtheylive.

Howdowehelppeoplelearn–discoveryskills

Thecategorieslistedabovehelppeoplethinkaboutwhatmatters,butthelearningbenefitsfromstructuredwaystohaveconversations.Ourapproachhasbeentoteachpeopletouseasetofdiscoveryskillstoprovidethatstructure.Noteveryskillisusedeverytime.Knowledgeofhowtousethem,whentousethem,andwhatyoucanlearnthroughtheiruseisthesubjectofa2-daytraining.Thediscoveryskillsweaskpeopletolearnare:

• Relationshipmap• Ritualsandroutines• Toptipsor2-minutedrill• Goodday/badday

Wealsoexpectpeopletolearnskillsthathelpkeeplearningalive.Theseare:

• Working/MakesSenseDoesn’twork/Doesn’tMakeSense• The4+1questions• TheLearningLog

Describingtheseinanydetailisbeyondthescopeofthisessayandthereaderisinvitedtolearnmoreaboutthembygoingtowww.tlcpcp.comorwww.sdaus.com.Descriptionsarealsoonyoutube(doasearchusingtheauthorsname).

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Whotolearnfrom–whototalkto,whotolistento

Thepersonistheprimarycontributortothelearningthatunderliesinformedchoiceandthefinaldecisionmaker.Butwhenwearedevelopingaplan,thepersonisrarelythesolecontributor47.Wealwayslearnfromthepersonandhavethepersoncontrolasmuchofwhatisintheplanasispossible.However,otherpeopleareexpectedtocontributeandthemoresignificantthedisabilityorcondition,thegreaterdependenceonothers.Thequestionthenarisesastowhoelsetolearnfrom.Astandardanswerformanypeopleusingservicesis“theteam”.Thesearethepeoplewhoareassignedtheresponsibilityforprovidingtheservicesanditisreasonableforthemtohaveinput.Whiletheyareexpectedtoprovidegoodsupport,theymayormaynothavetheinformationneededtosupportinformedchoice.Ourexperiencehastaughtusthatonlythosewithapersonalconnectionaregoodinformantsregardingwhatisimportanttothepersonandhowtosupporttheminawaythataccountsforbothwhatisimportanttoandwhatisimportantfor.Thereisrarelyalistofwhothesepeoplewithpersonalconnectionsare.Butitiseasytofindthem.Weaskthepersonwhosheorhefeelsclosetoanddothisusingtherelationshipmap.Wherethepersoncannotcompleteit,weasksomeofthosewhospendthemosttimewiththepersontocompleteit(preferablywehave2peoplecompleteitseparatelyandthencompareandreconcile).Thosewhoareclosesttothepersonarethenaskedasimplesetofquestions:

• Whatdoyoulike,admire,and/orappreciateabouttheperson?• Howlonghaveyouknowntheperson?• Howmuchtimedoyouspendwiththeperson?

Theanswerstothesequestionsclearlyindicateifthereisapersonalaswellasapaidrelationshipandhelpgivetheplandeveloperanideaofwhataspectsofthelifeofthepersonwouldhaveknowledgeabout.Theanswerstowhattheylikeandadmiregivetheinformationtobeusedintheperson’sintroduction.

Whatpeoplereadfirstmatters–thetrapofconfirmationbias

Itisnotjustwhatwehavelearnedbutitisalsohowwesharethelearning.Wemustpresenttheinformationinawaythatdoesnotreinforceassumptionsaboutpeoplewithdisabilitylabels,doesnotreinforcewhatisreferredtoasconfirmationbias48.(Thetendencytosearchfor,interpret,favor,andrecallinformationinawaythatconfirmsone'spreexistingbeliefs.)Peoplewithdisabilitiesandolderadultsareoftenintroducedbyadocument–aplan,ahistory,asummary.Nearlyallbeginwiththedisabilityandleveloffunction,whatthepersoncanandcannotdo49.Presentingthisinformation-albeitimportant-firstreinforcestheperceptionofsomeonewhocannotmakechoices,whoneedsotherstodecide.50

Ifwethinkabouthowweintroduceonefriendtoanother,weshareourpositiveimpressions–withafocusonthosethattheotherpersonmightappreciate.Ifweconsiderhowwearetaughttodevelopresumes,weemphasizestrengthsandrelevantpositiveexperiences.Thoseofuswhoareaskedtodevelopbiographieslearnthatwearebeingaskedtodescribewhysomeonemightwanttolistentousorreadwhatwehavewritten–thereisnoexpectationforustolistourchallenges.

14

Thisisnottosuggestorimplythatdisabilityissuesarenotlistedorthatchallengesinsupportareglossedover.Theissueiswhenthedisabilityissuesshouldappear(andhowtheyaredescribed).Westronglysuggestthattheorderbe:

• Whatotherslike,admire,orappreciate(apositiveintroduction)• Whatisimportanttotheperson• Howtobestsupportthepersontohaveabalancebetweenwhatisimportanttoandwhatis

importantfor• Demographicsanddiagnosticlabelsasneeded• Outcomesandactionsneededtoachievethem

Thetrapofthe“happyplan”orchoiceisnotanexcuse

Presentingwhatwelikeandadmireaboutthepersonfirstandthendescribingwhatisimportanttothepersondoesnotmeanthatchallengesorissuesareignoredorglossedover.Ignoringordistortingtheissuesandchallengesthatthepersonhasdoesadisservicetotheperson.Oneplansaidtheperson“putsthingsawayforarainyday”whentheissuewasthatshewouldtakeandhidethingsthatbelongedtoherhousemates.Thispositivedistortionwasfarfromhelpfulforherwhenshewasmovingtoanewhouse.Herhousematesbegantheirrelationshipbeingangrywithherandthosethatworkedinthehousefeltblind-sidedbythebehavior.Theopportunitytodiscoverwhyshedidthis,howtobestpreventorcope,andtheimplicationsforhousemateswaslost.Insteadthepersonexperiencedanotherfailure.

Choiceisnotanexcuseforinaction.Sayingthatwecanonlypresentpositiveinformationinourdescriptionsgoeshandinhandwiththemyththatbeingperson-centeredmeansthatthepersoncandowhatevertheywant,withoutregardtoconsequences.Wherethebarriertoadesiredlifeisabehavior,wherethereisabehaviorthatdevaluesorcausesharm,thereisanobligationtounderstand,helpthepersonmanagethebehavior,andhelpthepersonchange.Wherethepersondoeshavechallengingbehaviors,respectfulandaccuratedescriptionsneedtoaccompanyanydiagnosticlabel.

Tradeoffs(revisited)

Informedchoicerequiresthatpeoplearemakingconscioustradeoffs.Itisexceedinglyraretomakethecorechoicesofwheretolive,whotolivewith,whattodowithyourtime,andhowtouseyourresourceswithouthavingtobalancetheimportanceofonethingagainstanother51.Alogicalprogressionwouldbeonewherewefirstreflectedonthosethingsthatareimportanttousandtheirrelativeimportance.Thenlookatwhatareasonablebalancebetweenwhatisimportanttoandwhatisimportantforus.Finally,explorethechoiceswehaveandseekthecombinationthatcomesclosesttothewhatweimaginewouldbeideal.Thisrarelyhappensasdescribed.Theactualprocessismorelikelymessyandtohavedifferentdrivers.Forexample,manypeoplewhoarelookingforwork,findthejobfirstandhavethelocationofthejobcreateasetofboundariesonwheretheywilllive.PeoplewhoarelookingtoemigratetotheUSwilloftenseekoutthosetheyknow,whohavealreadyimmigrated,andchoosetolivenearby.Theythenlookforworkinthatarea.Olderadultsmayseektoliveincommunitieswithotherolderadults.Peoplewithandwithoutdisabilitiesmayfindthatproximityto

15

familyisthemostimportant.Somepeoplemaysaythataccesstopublictransportationismostimportant.Andsomewillsayboth.Butfamilymaylivewherethereisnopublictransportationandthetradeoffsmustthenbeweighed.

Theprocessofsupportingpeopleinmakingthetradeoffsthatgowithinformedchoicehastotakeintoaccountthecomplexityofchoice.Thenrecognitionoftheresponsibilitythatcomeswhenwehaveastronginfluenceontheprocessandtheoutcome(asinsupporteddecisionmaking).Orwherewehavesubstantialcontrolovertheprocessandtheoutcome(aswherethereisguardianship).Wherethesearepresentweneedto:

• Beginwithwhatweknowaboutwhatisimportanttotheperson• Engageinadiscoveryprocesswiththepersontolearnmore• Workwiththepersonandthosetheydesignatetodevelopacomplete“picture”ofadesirable

life• Advocateforwhatisdescribed• Continuetoadvocatewhensubstantialcompromisehappensbecausewhatisavailableis

deficient• Continuetolearnaspeoplehaveexperiences

Also,keepinmindtheprincipleslearnedbythosewhostudychoice.Sincepeopledon’tchoosebetweenthings,they“choosebetweendescriptionsofthings”52,howthosewhoaresupportingchoicemakingdescribetheoptionswillstronglyinfluencethechoicemade.Thereisnochangewithoutlossandlossaversionteachesusthatpeopletendtostronglypreferavoidinglossestoacquiringgains53.Studieshaveshownthatthegainneedstobeseenassignificantlygreaterthanthelossifpeoplearetochoosethegain.Andwhatisperceivedaspowerfullydesirablebyonepersonmaybeseenasmildlydesirablebyanother.Butagain,howdesirableitwillbeseendepends,inpart,onhowitisdescribedandwhoisadvocatingforthechange.Whatcausespeopletoagreemaybethepoweroftherelationshipoftothepersonadvocatingorthedesiretoavoidconflict54.

Allofthismakesittemptingtousea“bestinterest”standardevenwhenattemptingtosupporttheperson’schoice.Beinganeutralparty,whoissupportingthepersontomaketheirowndecision,ismoredifficultthanitappearsonthesurface.Butthegreatertheawarenessofthechallengesbythepersondoingthesupportingthemorelikelyitwillbetheperson’sdecision.

Addressingissuesofhealthandsafety–issuesofrisk

Weusethewordriskinawaythatissimilartoouruseofthewordchoice–asinglewordthatreflectsacomplexarrayofissues.Aschoiceandcontrolareintertwined-soareriskandchoice.Weallhavethe“right”tomakebadchoices.Personaldevelopmentandgrowthoccursfromthelearningthatcomesfrommakingchoices–bothgoodandbad.Ifwe“protect”peoplefrommakinganybadchoices,weareunnecessarilyrestrictinglibertyandinhibitinggrowth.Ifweseesupportingchoiceasanabsolute(orasanexcuseforinaction)peoplewillbehurt.Wemustrecognizethatsomeriskispartofeverydaylifeforallofus,andeffortstoeliminateallrisksarebothdoomedtofailureandcounterproductive.Someoftheeffortstoeliminateriskalsoreflectafearofliability,afearthatafailuretohavearestrictiveresponsewillresultinbeingsued.Thosewhomanageriskwell,putthefearoflitigationaside.They

16

recognizethatmitigatingriskbeginswithaskingquestionsandseekingtheanswers.Whentheperson’s“choice”createsariskofharmtothemselvesorothersthereisanobligationtorespond.Becausechoiceandriskcanbeinconflict,issuesofriskcanlimitchoice55.But,thereisalsoanobligationtoseektomitigatetheriskwiththeleastrestrictionoftheperson’sliberty,preferablywithnorestriction.

Eachtimeweareaskedtoassessriskweneedtoask:

• Whatisthenatureoftherisk?• Whydoesthepersonwishtotaketherisk?• Isthereanygainorlearningthatmightarisefromtherisk?• Aretherewaystosupportthepersonthatprovidesthegainorlearningwhilemitigatingthe

risk?

Then-

• Whatshouldourresponsebe?

Exploringthesequestionsinthedetailtheyrequireisbeyondthescopeofthispaperandisbeingdevelopedinanotherpaper.Butmanyoftherisksthatraiseconcernsreflectthatthe“importantto/importantfor”frameworkisnotbeingused.Wheretheideasandreflectionsthathavebeenraisedinthispaperhavenotbeenaddressed:wherepeopledonothavepositivecontrol,wherethingsthatneedtobeabsentarepresent,wheretheconnectionbetweenimportantforandimportanttoisignored–riskislikelytobepresent56andcanbemitigatedbychangingtheenvironment57.

Conclusion

Choiceandcontrolarethefoundationofthesystemweareseekingforthosewhouselongtermsupportsandservices58.Buttheyaresimplelabelsforcomplexissues.Effectivelysupportinginformedchoicerequiresanunderstandingofitschallengesandnuances.Weneedtosupportpeopleinhavingpositivecontrolwhilerecognizingthatwhilecontrolcanbedelegated,thedelegationcanberevoked.Inthispaper,Ihaveattemptedtogiveanoverviewofthecomplexityandchallengesofsupportingchoice.Butitisjustthat,anoverview.Ihavealsooutlinedtheframeworkforthinking,learning,anddecisionmakingdevelopedbytheLearningCommunityforPersonCenteredPractices.ThereadersisinvitedtoexploretheliteraturecitedinthereferencesandtheresourcesontheLearningCommunity’sandSDA’swebsites(www.tlcpcp.comandwww.sdaus.com)ItismyhopethatthosewhomanageandworkintheLTSSSsystemswillfindthisusefulinmakingthechangesneededsothatpeopleexerciseinformedchoiceandhavepositivecontrolovertheirlives.

Annapolis,MD

April2017

17

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55Carr,S.(2011).Enablingriskandensuringsafety:Self-directedsupportandpersonalbudgets.JournalofAdultProtection,13,122–136.Thisarticleexploresthebalancebetweenrisk,safetyandchoiceandoutlinessomestrategiestosuccessfullynavigatethatbalanceinservicesandpersonalbudgets.

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