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HCQUCARESIn this Issue:

Introduction 2GivingPeopleaVoiceatEachStageofLifethroughCommunicationAssessments 3Communication–AnImportantToolforTeams 6HealthLiteracy:WhenUnderstandingisAchieved 8TipsforPlanningSatisfyingandRewardingExperiencesintheCommunity 11Influenza(Flu) 14

Fall 2017 Edition

UnitedStatesSpecialOlympicsathleteJoeKaczynskilovesrunningandiscommittedtotrainingandbuildingthebondwiththesportthat“makeshimfeelalive,”accordingtoaSpecialOlympicsarticleontheESPNwebsite."Runningisthemostimportantpartofmyday,becauseit'stheNo.1thingIlove,"Joesays."It'sallaboutheartanddesire(Smith,2017)."

Howdomostpeoplewithintellectualanddevelopmentaldisabilities(I/DD)discoversomethingthat“makesthemfeelalive?”Peoplewhoknowthembestsuchasfamilymembersorcaregiverssupportingthemintheirgrouphomeareofteninfluentialinexploringandfacilitatingthewishesofpeopleintheircare.Theyunderstandhowthepersoncommunicatesbest,suchasthroughpicturesortheperson’sownsignlanguage.Theyalsoknowhowtohelpthepersonunderstandinformation,forexampleeducatingthemontheirhealthcareissues.EffectivecommunicationisthefoundationforensuringthatpeoplewithI/DDhaveavoice,allowingthemtochoosewhatisimportanttothem.ThiseditionofHCQUCaresisdedicatedtoincreasingthecaregiver’sabilitytoprovidepeoplewithI/DDtheopportunitiestoattaintheirhopesanddreamsandtobesuccessfulinachievinganEverydayLife.

Introduction

Reference:

M.Smith“Borntorun:'It'sallaboutheartanddesire'.”ESPN,23Mar.2017,www.espn.com/specialolympics/story/_/id/18985101/special-olympics-world-games-marty-smith-shares-inspirational-run-athlete-joe-kaczynski.Accessed30Aug.2017.

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By:RebeccaTrigger,RN

IndividualswithI/DDparticipateinsocietymorethaneverbefore,yetmanyofthemhavesignificantcommunicationsupportneedsthatremainunmet.Datafromthe2011-2012IndependentMonitoringforQuality(IM4Q)StatewideReportforPennsylvaniaindicatesthat“Forthoseindividualswhodonotcommunicateusingwords,therecontinuestobeissuesaroundlackofexplorationofalternativestrategies.Mostindividuals(nearlythreequarters)thatdonotcommunicateusingwordsdonothaveacommunicationsysteminplace.Whenithasbeenexploredandpeoplehaveacquiredsystemsincludingdevices,individualshavedevicesthatarenotinworkingorderandthatarenotbeingusedacrossallsettings”(IM4Qstatewidereport,2011-2012).

ThePennsylvaniaOfficeofDevelopmentalPrograms(PAODP)holdseveryone’srighttocommunicateinhighregard.Bulletin#00-08-18,CommunicationSupportsandServices,specifiesthatindividualsshould“receivethesupportstheyneedtoimprovetheirabilitytocommunicateacrossallaspectsoflife.”PAODPreaffirmedtheircommitmenttoeffectivecommunicationwiththefirstrecommendationfromtheInformationSharingandAdvisoryCommittee(ISAC)publishedinthe2016EverydayLives:"ValuesinAction”document,“AssureEffectiveCommunication."BothofthesedocumentsspeaktotheimportanceofpeoplewithI/DDhavingtheabilitytocommunicateinordertoexpresschoiceandensurehealthandsafety.

Onewaytoassureeffectivecommunicationisthroughacomprehensivespeechandlanguageevaluation.Thistypeofevaluationisusuallyperformedbyaspeechlanguagepathologist(SLP),alicensedhealthcareprofessionalwhoscreens,identifies,assesses,refers,andprovidestreatmenttopersonswithoratriskforspeech,voice,language,communication,swallowing,andrelateddisabilities.LookforaSLPwhoisregisteredwithTheStateBoardofExaminersinSpeech-LanguagePathologyandAudiology.TheStateBoardofExaminersregulatesthepracticeandlicensureofpersonsofferingspeech-languageandhearingservicesintheCommonwealthofPennsylvania(http://www.dos.pa.gov/ProfessionalLicensing/BoardsCommissions/Speech-Language%20Pathology%20and%20Audiology/Pages/default.aspx).

Giving People a Voice at Each Stage of Life through Communication Assessments

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KeepinmindthatnotallSLPsareexperiencedwithworkingwithindividualswithI/DDand/orhaveknowledgeofnewertechnologiessuchas,communicationdevices,iPadsandtheover250appsnowavailablespecificallyforindividualswithI/DD.ItisimportanttoseekoutSLPswhodohaveexperiencewithassessmentsforindividualswithI/DD,ascertainconditionsmayhavespecificcommunicationcharacteristicsthatneedaddressed,suchasthesocialcommunicationimpairmentsoftenseeninautism.ThefollowingquestionsmayassistcaregiverstodetermineifaSLPcanmeettheneedsofapersonwithI/DD:

• Whatisyourexperienceinworkingwithpeoplewhohaveintellectualanddevelopmentaldisabilities(I/DD)?

• Withwhichaugmentativeandalternativecommunication(AAC)devicesdoyouhaveexperienceworkingwith?

• AreyoufamiliarwiththemanyappsnowavailableforiPads,etc.?• AreyouabletoscheduleappointmentsforpeoplewithI/DDearlyinthedayorearlyafternoon?• Willyoutraveltogrouphomes/adultdaytrainingprogramstoperformevaluation?• DoyouallowextendedappointmentstoaccommodatetheneedsofsomeonewithI/DD?• Doyouaccept[nameofindividual’sinsurancecarrier]insurance?• Isaphysician’sorderrequiredforanevaluationand/ortreatment?• Willyoutraintheindividuals’family,staff,peers,co-workers,etc.onhowtouseanyaugmentative

and/oralternativecommunicationdevices?• Willyourscreeningincludehearing,speech,language,communication,andswallowingproblems,

ifneeded?

PeoplewithI/DDcanbenefitfromafunctionalcommunicationassessmentatdifferentstagesoftheirlives,becausetheresultsofacommunicationassessmentandimplementationofanyaugmentativeand/oralternativecommunicationtechniques,suchaspictureboards,manualsigns,gestures,PictureExchangeCommunicationsystem,andspeechgeneratingdevices,areeffectiveonlyduringthestageoflifetheassessmentwasperformed.Additionally,communicationneedscanbedifferentatdifferenttimesoflife.Forexample,accordingtotheAmericanSpeech-Language-HearingAssociation(IntellectualDisabilityOverview,2017,http://www.asha.org/Practice-Portal/Clinical-Topics/Intellectual-Disability/),“IndividualswithIDcontinuetodevelopcommunicationskillsbeyondtheschoolyears.AsthepersonwithIDreachesadolescenceandadulthood,hisorhercommunicationandfunctionalneedschange.Forexample,theteenyearsplaceapremiumonpeerinteractions,useofsocialmedia,andcommunicationskillsneededtooptimizeacceptanceandrelationshipdevelopment.Individualstransitioningfromschooltovocationalsettingswillneedcommunicationskillsspecifictotheworksetting,suchastalkingwithco-workersandsupervisors,andinteractingwithcustomers.”

PAODPrequiresthatindividualshavetheirfunctionalcommunicationneedsassessedannuallyaspartoftheIndividualSupportPlanprocess.PerBulletin#00-08-18,someofthegoalsofthistypeofassessmentaretoensuretheindividualhasincreasedcommunicationinavarietyofcontexts,increasedeffectivenessofcommunicationwithbothfamiliarandunfamiliarpeopleascommunicationpartners,andhastheabilitytoinitiate,maintain,andterminatecommunicationinteractions.Attimesthecareteammayfeelthepersoncommunicateswellenough,astheyunderstandwhatisbeingsaid,buttheeffectivenessofcommunicationinallenvironments,andwithavarietyofpeople,ispartoftheevaluationcriteriarecommendedbythePAODP.

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Caregiverswhorecognizelimitationsincommunicationandconsidertheimpactofaformalcommunicationassessmentareassistingthepersontoincreasecommunicationskills.Manytimescaregiversfeelchallengedbyfindinganappropriatecommunicationassessment.Itisessentialtohaveanorderfromthephysicianfortheassessment,sothatisthefirstthingtodo.Oncetheorderisobtained,considerthesesuggestionsforhowtofindaqualifiedprofessionaltoperformtheassessment:

How to find a licensed speech‐language pathologist?SLPsworkinavarietyofsettings,includingprivatepractice,hospitals,university-basedclinics,andschools.TherearevariousmethodsthatcanbeutilizedinlocatingaSLPwhohasexperienceworkingwithindividuals’withI/DD;

• Theindividual’sPrimaryCarePhysiciancanprovideareferralandmayhaveknowledgeofaSLPwhoworksspecificallywithindividualswithI/DD.

• Theindividuals’healthinsurer’s“network”listingmayprovideinformation.• Thespecialneedsunitintheindividual’sareamaybeabletoprovideinformation.• Personalrecommendationscanbefromfriends,providers,orotherfamilies.• Asearchofthelocal“yellowpages”oranonlinesearchunder“speechandlanguagepathologists”or

“speechtherapists”canbeperformed.• Professionalassociationssuchastheoneslistedbelowcanprovideinformation.

• AmericanSpeech-Language-HearingAssociation(ASHA,www.asha.org)• PennsylvaniaSpeech-LanguageHearingAssociation(PSHA,www.psha.org)

Oncetheassessmentiscompleted,theSLPwillmakerecommendationsforspeechtherapyand/orvariousassistivecommunicationdevices,andtheindividualcanbewellonhiswaytohavingthemeanstoeffectivelycommunicatewithallpeopleandinallsituations.

References:AmericanSpeech-Language-HearingAssociations,CommunicationCharacteristics:SelectedPopulationswithanIntellectualDisability,2017,http://www.asha.org/Practice-Portal/Clinical-Topics/Intellectual-Disability/Communication-Characteristics--Selected-Populations-With-an-Intellectual-Disability/IntellectualDisabilityOverview,2017,http://www.asha.org/Practice-Portal/Clinical-Topics/Intellectual-Disability/PADepartmentofHumanServices:Bulletin#00-08-18CommunicationSupportsandServices,http://www.dhs.pa.gov/publications/bulletinsearch/bulletinselected/index.htm?bn=00-08-18.

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Considerthefollowingscenario:Jim,amanwithI/DDwhohashearingloss,findshimselffeelingilloneafternoon.Hetypicallycommunicateswithsignlanguage,althoughhissigningisnotalwaysclear,butheusuallyisabletomakehisfeelingsknowntootherswhounderstandsignlanguage.Joe,anewcaregiver,doesnotknowsignlanguage.Jimmakesthesignfor‘sick’severaltimesoverthecourseofanhour,andJoeaskswhathemeansbutisunabletodeterminewhatJimwants.Infrustration,JimthrowsanemptycupatJoe,whodoesnotknowwhythishappenedanddoesnotwanttocontinueworkingwithJim.So,whatwentwronginthissituation,andhowcouldithavebeenavoided?

OneofthemosteffectivewaysthatcaregiverssupportindividualswithI/DDisbyunderstandingtheperson’swantsandneeds.Akeycomponentinunderstandingwantsandneedsiscommunication;itdrivesvirtuallyalloftheinteractionsthatpeoplehavewithoneanother.Infact,wearealwayscommunicatingwitheachother,evenwhenwedon’tsayaword.ThisbecomesespeciallyimportantwhenworkingwiththosewhohaveI/DD,astheymaynotalwaysbeabletoverballytellotherswhattheyneed.Theindividualmayusebehaviorsasameansofcommunicating,andifcaregiversarenotabletounderstandtheperson(orviceversa),thosebehaviorsmaybecomechallenging.Sometimes,themeansofcommunicationthatanindividualusesisnotapparentuntilcaregivershavehadthechancetoreflectonthem.Inthesesituations,itmaybehelpfulfortheentireteamtothinkaboutaplanforwaystoimprovecommunication.

Inordertoprovidethebestsupport,caregiversmustbeabletosimplyandeffectivelycommunicatewiththepersonwhileexploringwaystohelpthepersonbeheardandunderstood.Ifcommunicationconstantlybreaksdown,boththepersonandthecaregiversbecomefrustratedduetonotknowingeachother’swantsorneeds.Thepersonwiththechallengingbehaviorisoftenchallengingcaregiverstolistenandfigureouttheindividual’sneeds.Fortunately,therearewaysthatcaregiverscanworktogetherwiththeindividualtoimprovecommunication:

• “The 18 Second Rule”–allowatleast18secondsforthepersonwithI/DDtoprocessandrespondtoaquestionorastatement.Thisgivesthepersontimetothinkaboutandunderstandwhatwassaidwithoutputtinganypressureonthepersonorcausingundueconfusion.Ifit’sbeenmorethan18secondswithoutaresponse,feelfreetoaskthepersonifheorshewasabletohearandunderstandthestatement.

• Give direct attention to the person–avoiddoingpaperwork,havingconversationswithothercaregiversorhousemates,orperformingothertaskswhilethepersonistalking.Thispromotesrespectandafeelingthatothersareinterestedinwhatonehastosay.

Communication –An Important Tool for Teams

By:BrianJ.Leech,MS,ClinicalEducator

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• “Communication Partners”–peopleclosesttothepersonandwhoknowhimorherbest.Communicationpartnersincludefamilyorothercaregivers,butmayalsoincludeprofessionals(suchassignlanguageinterpreters).Theymayalsounderstandtheperson’sbodylanguage,verbalornon-verbalcues.

• Communication Tools –theseareitemsthathelptofacilitatecommunicationbetweenthepersonandothers.Thesecanincludethefollowingdevices:

• Communication Board:adeviceprintedonpaper,cardboardorposterboard,oranyotherformat;itlistsfrequentlyusedwordsandphrasesthatarespecifictotheperson.

• Augmentative Communication Devices:electronicdevicesthatcanbeusedbyindividualstocommunicateverbally.Thesecanbeintheformofacomputer,smartphone,oratabletthatusesprogramsandapplicationstohelpthepersoncommunicateverbally.

InadditiontounderstandingtheindividualwithI/DDbetter,caregiverscanalsousecommunicationasameanstohelpthepersonfeelsafeandtoexcelinhisorherrecovery.Afewtechniquescanhelpinthisregard:

• Active listening. Whencommunicatingwithsomeone,listeningisvital.Inactivelistening,thepersonwhoishearingthespeakerisalsoworkingtounderstandthemessagesbeingsent.Activelisteningnotonlyhelpstofosterunderstanding,butitalsohelpstobuildtrustbetweencaregiversandtheindividual.Touseactivelistening,remembertogivefullattentiontotheindividual–donottrytodootheractivities/choreswhilethepersonisspeaking.Also,itisagoodideatotrynottothinkofwhattosaywhilethepersonisspeaking.Instead,restatewhatthepersonhassaidtoensureunderstanding.

• Take your time. Trynottorushconversationswiththeindividual,buttaketimetoclearlystateyourthoughts.Usesimpleanddirectwords,andavoidanyprofessionaljargon.Ifneeded,repeatinformationfortheindividualifheorsheishavingahardtimeunderstandingwhatisbeingsaid.Thisrelateswelltothe18SecondRuleasdescribedabove.

• Avoid abstract concepts. Keepinglanguageconcreteandsimplemeansthatthereislessroomformistakeninterpretationsormisunderstandingsthatcanleadtopotentiallydifficultand/orchallengingsituations.Forexample,whensittingdownatarestaurant,acaregivercansay,“Let’ssithere,”ratherthan“Grabachair.”Keepthingssimpleandconcreteandaskyourself,“CouldwhatI’msayingbemisinterpretedinsomeway?”Ifso,thinkabouthowitcouldbestatedmoreclearly.

• Validate.Validatinganotherperson’sfeelingsisaneffectivewayofhelpingthatpersonfeelheard,understood,andaccepted.Validationmeanslettingthepersonknowthatwhatheorsheisfeelingisnormalandokay.Thisisnottoexcuseunhealthyordangerousbehavior,ofcourse,buttolettheindividualknowthatsomeoneisinterestedandinvestedintryingtounderstandhisorherviewpoint.Forexample,whenMarysays,“IreallymissmyMom,”thecaregivercanvalidatethatbystating,“It’snormaltomissthepeopleweloveandwantthemtobearoundus.”Aninvalidatingstatementwouldbe,“Don’tworryaboutit,youjustsawheryesterday,”whichcanleadMarytofeelmisunderstoodortothinkthatotherssimplydon’tcare.

Keepinmindthatgoodcommunicationtechniquestakepractice.Nobodycanbeaperfectcommunicatoratalltimes,butthatdoesn’tmeanthatit’simpossibletohelpothersmoreclearlyunderstandwhatwesay.Also,listeningandattemptingtounderstandtheindividualisjustasimportant,ifnotmoreso,thanclearlystatingone’sownthoughtsandfeelings.Effectivecommunicationisatwo-waystreet,andbyworkingtoimproveit,teamsandindividualscanseefewerchallengingbehaviorsandexperiencemoresatisfactionwithday-to-daylife.

References:

KEPROSouthwesternPAHealthcareQualityUnit(2013).Behavioriscommunication:Strategiesforunderstandingchallengingbehaviors.Retrievedfromhttp://www.hcqu.kepro.com.

Okun,B.F.(1997).Effectivehelping:Interviewingandcounselingtechniques(5thed.).PacificGrove,CA:Brooks/ColePublishingCompany.

Rosenberg,M.B.(2003).Nonviolentcommunication:Alanguageoflife(2nded.).Encinitas,CA:PuddleDancerPress.

Seligman,M.E.P.,Steen,T.A.,Park,N.&Peterson,C.(2005).Positivepsychologyprogress:Empiricalvalidationofinterventions.AmericanPsychologist,60(5),410–421.

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Health Literacy:When Understanding is Achieved

By:MargieGrieser,RN,CDDN

HealthLiteracyisthedegreetowhichindividualshavethecapacitytoobtain,processandunderstandbasichealthinformationandservicesneededinordertomakeappropriatehealthdecisions(CenterforHealthCareStrategies,Inc.2013).CaregiverscanconsiderthatpeoplewithI/DDrequirevaryingdegreesofassistancetoachievehealthliteracy.Havinghealthliteracyresultsistheabilitytouseself-directionbypracticingchoiceandcontrolwhendecidingone’sownhealthcarestrategy.

PreviousarticlesinthisseriesdiscussedobtainingandfacilitatinghealthinformationwhenworkingwithpeoplewhohaveI/DD.Majorprinciplesfromthosearticleswere;assistingtheindividualwithI/DDtolocateaccessible,understandable,concreteinformation,andprioritizingtheinformationtoanswertheindividual’squestions.Thecaregivercanthenfacilitatetheperson’sunderstandingoftheinformationbyusingtechniquessuchasallowinglongertimefortheindividualtoprocessthenewinformation,assistingtheindividualtofindandorganizepicturesdepictingthehealthcaretopicandtreatment,andrepeatingtheinformationoften,butavoidinggivingtoomuchinformationatonetime.

Thisfinalarticlewillofferpointersonhowtoassurethepersonhasgainedunderstanding,andhowtoassistthepersontousetheinformationtomakeahealthcaredecision.

InordertoconfirmthepersonwithI/DDislearningandretainingthehealthcareinformation,itisimportanttoobservethenon-verbalresponsesofthepersonandtheprobablemeanings.Ingeneral,humanactionscancommunicate,“Igetit,”or“Idon’tgetit”and“Iaminterestedinlearningaboutthis,”“Idon’twanttolisten,”or“I’mafraid.”Thecaregivercanobservethesenon-verbalindicationsofsuccessfulorunsuccessfulhealthliteracybyusingthesesuggestedtipsandtools:

• Consider body language.Istheindividualfocused;lookingatyouorthematerialsbeingintroduced?Or,istheindividualdistractedandlookingelsewhere?Istheindividualleaningintotheconversationandtheeducationalmaterials;showinginterest,orleaningbackandaway;showingdisinterest?

• Gestures.Doestheindividualusegesturessuchasraisedorfurrowedeyebrows;showingconcentration,orrollingtheeyes;showingdisbelief?Othergesturesthatmayshowdisinterestsuchasrubbingtheeyes,handorfingerwaving.

• Nods.Itisimportanttoknowthepersonyouaresupporting.Aretheynoddingtheirheadininterest?Remember,peoplemaynodbutthatdoesnotalwayssignifytheinformationisbeingprocessed.Itmaybeaticorawaytoshowfatigue.

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• Facial Expressions.Whatexpressiondoestheindividualshowwheninterested?Identifyandconsidertheexpressionstoconfirmtheinformationisbeingheardandprocessed.

• Sounds.IndividualswithI/DDcanmakenoisestoshowexcitement,fear,anxiety,orfrustration.Itisimportanttorecognizeandunderstandthesesounds.Listenforgrindingofteeth,deepbreaths,holdingofbreath,whoopingorcoughingnoises,loudnoises,rapidspeechorsilence.Thesesounds,specifictoeachindividual,canindicatethatsheorheisorisnotunderstandingtheinformationbeingpresented.

• Eye Contact.Iftheindividualiscapableofmaintainingsomeeyecontactwithyou,theeducator,considerthatadequateeyecontactcanbeaneffectivewayofsaying,“Iaminterested,Iwanttolearn”or,wanderingeyesmayindicatealackofinterest.RememberthatnoteveryonewithI/DDiscomfortablewitheyecontact,suchasanindividualwithAutismSpectrumDisorderorFragileXSyndrome,renderingitanunreliableindicator.

• Language.HastheindividualwithI/DDaskedappropriatequestions;showingunderstandingormadeinappropriatecomments;indicatingalackofunderstanding?

• Peculiar Behaviors.Adultswithasignificantsensoryprocessingdelaymayhavedevelopedcopingstrategieswhichincludepeculiarbehaviorsorbehaviorsthatareoftenmisunderstood.Thismightincludewithdrawingfromtheopportunityforhealtheducation.BesuretounderstandthebehaviorsofthepersonwithI/DDascopingstrategiestopreventthemfrombeingmisinterpreted.

• Mirroring.Somemaybeabletorepeatwhathasbeensaidortoprovideareturndemonstration.Thisdoesnotalwaysindicateunderstanding.IndividualswithI/DDcanbeveryadeptatcopyingwhathasbeensaidordone,becausemostareeagertopleasethecaregiver.Makeeveryefforttodistinguishbetweena“rehearsedanswer”,andtheanswergivenbecausehealthliteracyisobtainedthroughtheindividual’sunderstanding.

Assisting the Person to Make a Health DecisionAtthispointthecaregiverwillwanttoassistthepersontomakeahealthcaredecision,usingtheinformationobtainedandprocessed.Herearesomesuggestionsforassistinginthedecisionmaking:

• Asktheindividualtomakeadecisionregardingthehealthtopicthathasbeenlearned.Forexample,considertheindividualwhomaybelearningaboutandpreparingforatesttodetermineifdysphagia(difficultyswallowing),ispresent.Thecaregivermayask,“Sincewehavespenttimelearningabouthavingaswallowingtest,whatisyourdecision?”Theindividualmayrespond,“Yes,pleaseschedulethetest.”Or,“No,Idon’twanttohavethistest.”Thecaregiverwillwanttoexplorethetopicfurtheriftheindividualrespondsnegatively,onlytoassureunderstanding.It is important to not assume the individual has little understanding of the topic because he did not give the response the caregiver would expect.

• Helptheindividualwiththedecisionmakingprocessbyaskingifthereareanyconcernsorworriesaboutthetest.Tohelptheindividualtomakeaninformeddecision,understandandclarifyanyconcernsexpressed.Onewayisbyaskingtheindividualtwoquestions:“Whatwillhappenifyouhavethetest?”and“Whatwillhappenifyoudon’t?”Maybe,apotentialchangeinone’sdietisaconcern.Emphasizetheoutcomeofthetestandnottheprocess.Presenttheinformationaspositivelyaspossible.Thecaregivermaysay,“Anewtextureofyourfoodcanmakeiteasierforyoutoswallow.”

• Makeasimplelistforafewpositivesandafewnegativesusingtheindividual’sownfeedback,ifpossible.Itmaybebeneficialtopresentthelistaspicturesthatthepersoncanunderstand.

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References:HealthLiteracy,(n.d.).RetrievedAugust22,2017,fromhttp://abclifeliteracy.ca/health-literacyhttp://www.academia.edu/10687519/Unit_24_Understanding_the_Context_of_Supporting_Individuals_with_Learning_Disabilities.RetrievedJuly11,2017.KEPROHealthcareQualityUnitPresentation:SensoryProcessingDisorders.April,2017.

Ifremindersoftheprocessarenecessaryfortheindividual,itmaybeadvisabletocreatealistofstepsinordertoclarifythetestprocedure.Thenstatethestepsinchronologicalorder.Forinstance;first,yougotothehospitalandsigninwiththereceptionist.Second,youwillmeetwithaspeechpathologist.Third,youwillsitinachair.Fourth,thespeechpathologistwillofferyousomebitestochewandswallow.Thisisnotadetailedrehearsalguide;itisareminderofthekeystepsintheprocessinordertotriggertheperson’smemorytoremindhimofwhattoexpecttomakethedayofthetesteasierfortheperson.

Anothersuggestionistodoabitoflocalresearch.Isthereanotherpersonfromyouragencyorfamilylivingclosebywhohadthesametest?Isthereasupportgroupthatcanofferpersonalexperiences?ThepersonwithI/DDmaybenefitfromcommunicatingwithothersandhearingtheirstoryabouthavingaswallowingstudy.Maybesomeoneintheirnetworkofcommunitysupportscansharetheirexperience.Questionsmaybeansweredbycallingthephysician’sofficeandaskingthenursetoobtainhealthinformationonamorecomplicatedtestorprocedure.

Itisimperativetoobtain,process,andunderstandbasichealthinformationinordertomakehealthcaredecisions.PeoplewithI/DDmayrequireassistancetoobtainhealthliteracy,andcaregiverswhoimplementthesuggestionsfromthisseriesofarticlesareequippedtoprovidethatassistance.Whenhealthliteracyisachieved,thepersonbecomesanactivememberofthehealthcareteamandhasavoiceinhealthcaredecisions,givingthemchoiceandcontrolovertheirlives.

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Tips for PlanningSatisfying and Rewarding Experiences

in the CommunityBy:CherylPursley,RN,CDDN

Lastspring’sarticle‘CommunityParticipationisVitalforanEverydayLife,’explainedtheimportanceforpeoplewithI/DDtoexperiencevariousopportunitiestoparticipateinthecommunity.Thebenefitsforthemaremanyandrangefromenhancingone’slifeexperiencestoengagingwithothersandformingsocialrelationships.

Communityparticipationsuchasemployment,joininginactivitieswithpeopleweenjoy,orsimplymeetingafriendforcoffee,arechoicesthatmostpeopletakeforgranted.Weexploredifferentideasthatsparkourinterest,decidewhowewanttogowithortogoalone,andmakeaplantoitcarryout.Wecandecideonthespurofthemomenttogotoamovieormakeextensiveplansforamuchneededvacation.PeoplewithI/DDwantandshouldhavethesesameopportunitiestoexperiencean“EverydayLife.”CaregiverssupportingpeoplewithI/DDshouldpromotetheperson’sdesiresandwishestobeincludedinthecommunityandexperiencethesamejoys,senseofself-esteem,andfriendshipsaspeoplewithoutdisabilities.Withathoughtfulplanforidentifyingandovercomingthebarriersthatmaybepresent,asuccessfuloutcomecanbeachievedthatissatisfyingfortheindividualandgratifyingforthecaregiver.Acarefulplanincludes:

• Identify the person’s wishes to participate in the community, be specific.Manyactivitiesareplannedbasedonthecaregiver’sideasfortheperson,nottheperson’swishes.

• Make a list of barriers that may interfere with the plan.Barriersareperson-specificsuchastheabilitytopayfortheactivity,transportation,andhealthcareissues.

• List possible solutions to solve the barrier.

• Review and choose best possible solutions for each barrier.

• Create a plan to remove barriers.

• Implement the plan and ensure barriers along the way have been solved.

• Assess the outcome.Didtheplanwork?Wasthepersonhappywiththeoutcome?Wasthebarrierremovedandifnot,whatneedstobechangedtoremovethebarrier?

• Modify the plan if needed.Plansforfutureactivitiescanbebasedonthisplanaftermodificationshavebeenfinalized.

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Considerthebelowaccountofhowacaregiverhelpedmakeadreamcometrue:

Val works a block shift on weekends and plans activities in the community for the two men in the group home she supports. She has taken them bowling, to the local bingo hall, and to various restaurants close by. Next month one of the men will be away for the weekend and Val will be working with Tony alone. She planned a fun night at a Mexican restaurant Tony likes followed by an hour playing bingo. Val explained her plan to Tony and was surprised that he didn’t share her excitement. She asked him what was wrong and was surprised when Tony responded, “I want to do something different, I don’t even like to play bingo. You never ask me what I want to do.” Tony never expressed his dislike for bingo and this made Val feel awful. He was right; she never asked him what he wanted to do for fun. She apologized, asking him if he could do anything that weekend what would it be. He quickly replied, “I want to see the Pirates. I want to go to a real baseball game with all my friends on Pine St.”

Val immediately felt overwhelmed with the prospect of planning this event. There were so many issues that needed to be addressed, but she was excited for Tony to experience his first baseball game. Val made a list of all the steps and obstacles that needed to be overcome in order to make that happen.

• CheckthePiratesscheduleandchooseadayandtimeforthebaseballgame• Chooseseats• Checkthecost• Transportation• CallthehouseonPineSt.fortheirinterestinattendingthegame• TriggersforTonyrelatedtohisautismdiagnosisandhowtohelphim:

• Crowds• Closenessofpeople• Sights,sounds,smells• Activitytokeephimbusyifhebecomesbored

• Thehotweather• Food• Bathroomrun

Val called the group home on Pine St., explained her plan, and asked for feedback. The caregivers thought it was a great idea and three of their individuals were thrilled about going to the game. They discussed Val’s list of possible barriers that may occur so they could troubleshoot ahead of time.

Val checked the Pirate’s schedule. There was a Saturday night game and an afternoon game on Sunday when his housemate would be away. Due to the fireworks display scheduled after the night game she chose the Sunday afternoon game. (Fireworks scared Tony once causing him to run around holding his head screaming.) Val thoughtfully looked online at the seating chart. She looked for seats close to the bathrooms, on the end of a row, with only a few steps down the stairs to their seat. This would make it easy to reach their seats and get to the bathroom quickly if needed. Val searched online for the parking section and located the accessible parking areas. Pine St. had a van to accommodate everyone, with a pass for accessible parking. She called Pine St. group home and asked if a male caregiver would be attending as Tony would need help in the bathroom. Both Carl and Ben were working that weekend and could help out.

On the weekends she worked before the game, Val turned on the Pirate game and was surprised that Tony knew the strategy of the game and also the names of many prominent all stars. She asked Tony to listen closely to the noise of the crowd during the game and reminded him that people yell out and cheer loudly during the game. She told him he could cover his ears with his hands if the noise bothered him. Val also pointed out the close seating when the camera moved in showing the audience. They would be surrounded by other people. She also explained that people around them would be eating fragrant food like hot dogs,

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hamburgers and fries. Tony had diabetes and was overweight, but Val wanted him to buy and enjoy food at the game. They discussed the foods he could eat and still follow his 1,800 calorie diet. He was excited to eat his first stadium hot dog!

The day of the game arrived and Tony began pacing and rocking, he was so excited. Val checked the weather, sunny and warm, perfect weather. Due to a side effect from one of his medications, Tony was sunburned a few times last summer. Before they left for the game she applied sunscreen and reminded him to bring his Pittsburgh Pirate baseball cap. She packed the sunscreen and his small model car that he like to hold when he was anxious or bored. Val sat down with Tony and reminded him again of the close proximity to the rest of the crowd, the noises and cheering, and the food he decided to buy.

Carl and Ben arrived in the van to pick up Tony and Val. The people from Pine St. were as excited as Tony and began singing “Take Me Out to the Ballgame” on the ride in. They arrived at their seats which were perfect for getting in and out easily and Tony sat on the end seat. While waiting for the game to begin, Tony began restlessly rocking in his seat. Val heard a small boy behind them ask his dad what Tony was doing. Val turned around and introduced Tony to him stating, “This is Tony’s first baseball game and he is very excited.”

With Val’s help in recognizing all the obstacles that could take place with an outing to the ball game, Tony was well prepared. Val gave Tony his model car to hold until the game started and later when the crowd cheered after a home run, Tony put his hands over his ears. He loved the stadium hot dog he bought and because he drank a diet coke with no calories, he and Val shared a bag of popcorn. Carl accompanied Tony to the bathroom and while there applied more sunscreen. At the 7th inning stretch, Tony and his friends stood up and sang “Take Me Out to the Ballgame” loud and clear. By the 8th inning, everyone was getting tired and a bit restless. Val asked if they were ready to go home and all agreed they were. As they got up to leave the small boy sitting behind Tony smiled said “Bye Tony!” Tony leaned over, shook his hand and said goodbye. On the way home Tony and his friends from Pine St. talked excitedly about the game, the home run, and the good food. They listened to rest of the game on the radio and all cheered when the Pirates won. When they returned home, Tony was tired but still happy and excited. He continually thanked Val for the “best day ever!” Val promised Tony that they would definitely go again. It was rewarding for her to be in the position to arrange outings in the community and have such a positive influence on the lives of people she supports.

Reference:

Beck,K.(n.d.).CommunityInclusion.RetrievedJune8,2017,fromhttp://www.dhs.state.il.us/OneNetLibrary/27896/documents/By_Division/Division%20of%20DD/ResidentialDirectorCore/Module5RDCCommunityInclusion.pdf

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Thisfallbeginsthe2017-2018fluseason.ThisarticleprovidescaregiversofpeoplewithI/DDandself-advocatesbasicinformationonthefluincludingwaystopreventthefluandhowtocareforapersonwhocontractstheflu.

What is the flu?Fluisanillnesscausedbyviruseswhichaffecttherespiratorysystem.Therespiratorysystemincludesthenose,throatandlungs.Thefluiscontagiousandisbelievedtobespreadbydropletswhenaninfectedpersonsneezes,coughsortalks.Whenthosedropletsgetintothemouthsornosesofothers,thoseindividualscanbecomeinfected.Ifaninfectedpersonleavesdropletsonsurfaces,itispossiblethatanotherindividualwhotouchesthosesurfacesandthentoucheshisorherowneyes,nose,ormouthcanalsobecomeinfected.Anormallyhealthypersonwhogetsthefluviruscaninfectothersadaybeforethatpersonhassymptomsandthenuptoaweekafterbecomingsick.Personswithweakenedimmunesystemswhogettheflucaninfectothersforalongerperiodoftime.Commonflusymptomsincludesomeorallofthefollowing:

• Fever/chills• Cough• Runnynose

Individualswhohavetheflumayappearquiteillanditmaynotbedifficultforcaregiverstorecognizethatanindividualissick.However,forindividualswhodonotcommunicatewithwords,caregiversmayobservebehaviorssuchasbeingwithdrawn,alackofenergyorenthusiasm,irritability,refusingtoeatordrink,andgrimacingduringswallowing.

Influenza (Flu)By:CarriePerrell,BSN,RN

• Sorethroat• Muscleaches• Tiredness

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Thesesymptomsaresimilartocoldsymptoms.Whatistypicallydifferentwhenapersonhasthefluisthattheflusymptomswillcomeonquicklyandareusuallymoreseverethancoldsymptoms.Muscleachesarecommonwiththeflu,asisatemperatureover100°F.Symptomsoftheflumayimproveoverthecourseoftwotofivedays,butsomepeoplefeelrundownforaweekormore.

What is the concern about getting the flu?Flucancausemildtosevereillnessandinsomecasescanleadtodeath.Anyone,includinghealthypeople,cangettheflu.Aswell,anyonecanexperiencecomplicationsfromtheflu.Complicationsincludeinfectionssuchaspneumonia,earandsinusinfections,anddehydration.Thosewhohavechronicmedicalconditionssuchasasthma,congestiveheartfailure,ordiabetes(tonameafew)mayseeaworseningofthoseconditions.IndividualswithI/DDmayhaveachronicillness.Forexample,manyindividualswithDownsyndromearebornwithheartdisease.Ifthoseindividualsgettheflu,itcanleadtoaseriouslunginfection.Therefore,takingmeasurestopreventthefluisimportanttotheirhealth.

How can the flu be prevented?TheCentersforDiseaseControl(CDC)recommendsgettinganannualfluvaccine.Aswell,typicalinfectioncontrolmeasuressuchashandwashing,coveringone’smouthwhensneezingorcoughing,andavoidingpeoplewhoaresickaresuggested.Eatinghealthy,gettingadequatesleep,andmanagingstressmayalsohelpprotectagainstgettingtheflu.

How does the flu vaccine work?Therearemanydifferentfluviruses.Researchdetermineswhichfluviruseswillbethemostcommonduringeachupcomingfluseason.Usingthisinformation,vaccinesarethenformulated.Themostcommonfluviruseschangeyeartoyearandthisiswhyapersonneedsvaccinatedforeachnewfluseason.

Can’t the flu vaccine cause the flu?No.Thefluvaccinevirusesinvaccinesare“inactivated”whichmeanstheyarenotinfectious.However,apersoncoulddevelopsymptomssuchasfeverandachingmusclesduetothebodyproducingantibodies.Sometimesapersonmaystilldeveloptheflubecausethatpersonwasexposedtothefluvirusbeforethevaccinationtookfulleffect.Ittakesapproximatelytwoweeksfollowingvaccinationforapersontodevelopimmunity.

Itispossibletostillgettheflu—evenifvaccinated—ifthevirusinthevaccinedoesnotcloselymatchthevirusthatultimatelycirculatesinthecommunity.However,whenthisoccursthevaccinestillmayhelpmanypeoplepreventflu-relatedcomplications.Thisisbecausethepersonmakesantibodieswhichstillprovidesomeprotectionagainstthefluvirus.

Can I get the nasal spray flu vaccine and avoid a shot?TheCDChassuggestedthenasalsprayvaccineshouldnotbeused.Thisdeterminationwasmadeduetostudyofdatafromthepastfewyearsshowingthatthenasalspraywasnoteveryeffective.

Can everyone get the vaccine?TheCDCrecommendsthateveryoneovertheageofsixmonthsgetthefluvaccineeachyear.Therearespecialrareexceptionstothisrecommendationwhichincludepeoplewhohavesevereallergiestoanyingredientinthevaccine.Therearespecialconsiderationsforpersonswitheggallergieswhichmaybediscussedwiththeperson’sdoctor.PersonswhohaveeverhadGuillain-BarreSyndrome(GBS)shoulddiscusstheirhistorywiththedoctorpriortogettingvaccinated.

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What to do when a person gets the flu.Whenapersonovertheageof65oranyindividualwithachronicillnessgetstheflu,caregiverswouldwanttocontacttheperson’sphysicianforadvice.Thephysicianmaywanttheindividualtobetreatedwithantiviralmedications.Thesemedicationsprovidethegreatestbenefitwhenstartedwithintwodaysofbecomingill.Therearesideeffectsassociatedwiththesemedicationsandinsomecircumstancesthephysicianmaynotorderthem.

Generaltreatmentconsistsofmakingsurethepersonrestsandhasadequatefluidintaketoavoiddehydration.Thedoctormaysuggestthepersontakesmedicationsasneededforfeverandaches.Adoctor’sorderisnecessaryforanymedicationsgiventoapersoninagrouphome.

TheCDCrecommendsthatapersonwhogetstheflustayhomeforaminimumof24hoursafterthefeverisgone.Stayinghomewhenapersonisinfectioushelpspreventspreadingittoothersinthecommunity.

Do I need to see the doctor?Followagencypolicywithrespecttothisquestion.Generallyspeaking,apersonwhohasafeverthatlastsmorethanthreedaysmayhaveasecondaryinfectionwhichwillneedtreated.Severethroatpainmaymeanthepersonhasstrepthroat,whichrequiresmedicalattention.Coughs,congestionandheadachesthatpersistcouldalsobeindicativeofinfectionssuchasbronchitisorsinusinfections.

Emergencyattentionisrequiredforanyonewhohasshortnessofbreath,severechestpain,severeheadache,dizziness,confusionorpersistentvomiting.

SummaryFluseasoncomeseveryyear.Followdoctor’sordersasfarasimmunizingagainstthefluandremembertoalwayspracticegoodhandhygiene.Washingyourhandsthoroughlywithsoapandwaterorusinganalcoholbasedhandsanitizerwhensoapandwateraren’tavailablecanhelpprotectagainstgettingtheflu.Avoidingtouchingone’seyes,noseormouthandavoidingcrowdswhenfluoutbreaksareoccurringinyourareacanalsohelpapersontoavoidgettingtheflu.

References:

MayoClinic.(2016,September24)FluShot:Yourbestbetforavoidinginfluenza.Retrievedfrom:http://www.mayoclinic.org/diseases-conditions/flu/in-depth/flu-shots/ART-20048000?p=1

CentersforDiseaseControl(CDC).FrequentlyaskedfluquestionsInfluenza2017-2018season.Retrievedfrom:https://www.cdc.gov/flu/about/season/flu-season-2017-2018.htm

StatPlus.(2017,February23).NasalfluvaccinemaynotberecommendedforuseinUSforyears.Retrievedfrom:https://www.statnews.com/2017/02/23/flu-mist-nasal-vaccine/

DDSSafetyNet.(2007).Recognizingthenon-verbalsignsofinfection.Retrievedfromhttp://www.ddssafety.net/sites/default/files/attachments/10-06-30/NEWS2007Fall.pdf

CentersforDiseaseControl(CDC).(2016,September7).Vaccination:WhoShouldDoIt,WhoShouldNotandWhoShouldTakePrecautions.Retrievedfrom:https://www.cdc.gov/flu/protect/whoshouldvax.htm#flu-shot

CentersforDiseaseControl(CDC).(2017,February14).TheFlu:WhatToDoIfYouGetSick.Retrievedfrom:https://www.cdc.gov/flu/takingcare.htm

WoodbineHouse.Chicoine,B.,M.D.,McGuire,D.,Ph.D.(2010).TheGuidetoGoodHealthforTeensandAdultswithDownSyndrome.

WebMd.(2016,September17).FluorColdSymptoms?Retrievedfrom:http://www.webmd.com/cold-and-flu/cold-guide/flu-cold-symptoms#1

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