Healthy Delawareans with Disabilities 2010 Project Delaware Health Status Report for Persons with Disabilities Center for Disabilities Studies Division of Developmental Disabilities Services UniversityofDelaware DelawareHealthandSocialServices 461WyomingRoad•Newark,DE19716 24­HourTollFreeContactNumber (302)831­6974•(302)831­4689TDD 1­866­552­5758 www.udel.edu/cds www.dhss.delaware.gov/dhss/ddds/ Delaware Health Status Report for Adults with Disabilities prepared for Division of Developmental Disabilities Services Delaware Health and Social Services by the Center for Disabilities Studies University of Delaware Newark, Delaware 19716 June 2007 Healthy Delawareans with Disabilities 2010 Project Advisory Panel Many thanks to all members of the Advisory Panel who served from 2005­2007.Without their support and input the Healthy Delawareans with Disabilities 2010 Project could not have been as successful. Becky Allen ,TheArcofDelawareCeleste Anderson ,DivisionofManagementServicesCarol Barnett ,DivisionofServicesforAgingandAdultswithPhysicalDisabilitiesLou Bartoshesky ,AlfredI.duPontHospitalforChildrenLinda Brennan­Jones ,ChristianaCareFred Breukelman ,DivisionofPublicHealthAzalia Briggs ,Self­Advocate,Governor’sAdvisoryPanelforDivisionofServicesforAgingandAdultswithPhysicalDisabilitiesJon Buzby, SpecialOlympicsDelawareJan Capano ,Parent,StockleyCenterParentAssociationMark Chamberlin ,DepartmentofEducationJacqueline Christman ,DivisionofPublicHealthAlice Coleman ,DivisionofSubstanceAbuseandMentalHealthDiann Collins ,Parent,MetLifeSteven Dettwyler ,DivisionofSubstanceAbuseandMentalHealthDoyle Dobbins , DelARF Joyce Edwards ,PracticeWithoutPressureAdam Fisher ,DepartmentofEducationAmy Forrest ,Self­Advocate,DivisionfortheVisuallyImpairedKaren Gallagher ,Self­Advocate,DevelopmentalDisabilitiesCouncilMichael Gamel­McCormick ,CenterforDisabilitiesStudiesMawuna Gardesey ,DivisionofPublicHealthVickie George ,Self­Advocate,YesYouCanTM Lisa Gilman ,CenterforAppliedDemographyandSurveyResearchBob Goodhart ,DivisionfortheVisuallyImpairedRosanne Griff­Cabelli ,DivisionofManagementServicesBrian Hartman ,DisabilityLawProgramCharlotte Herbert ,LowerDelawareAutismFoundationLinda Heller, DivisionofServicesforAgingandAdultswithPhysicalDisabilitiesLarry Henderson ,IndependentResources,Inc.Kyle Hodges ,StateCouncilforPersonswithDisabilitiesTony Horstman ,Parent,StateCouncilforPersonswithDisabilitiesRay Hunt ,IndependentResources,Inc. Deb Jastrebski ,PracticeWithoutPressureThomas Kelly ,DivisionofDevelopmentalDisabilitiesServicesJoseph Keyes ,DivisionofDevelopmentalDisabilitiesServicesLora Lewis ,DivisionofPublicHealthHarrietAnn Litwin ,DivisionofVocationalRehabilitationJay Lynch ,DelawareHealthandSocialServicesPat Maichle ,DevelopmentalDisabilitiesCouncilMiranda Marquez ,DepartmentofLaborWalt Mateja ,DivisionofPublicHealthHelen McDonnell ,DivisionofSubstanceAbuseandMentalHealthDaniese McMullin­Powell ,ADAPTDelawareBetzi Medis­Canard , Self­Advocate Karen Michel ,DivisionfortheVisuallyImpairedHeidi Mizell ,Parent,AutismSocietyofDelawareChris Oakes ,DivisionofServicesforAgingandAdultswithPhysicalDisabilitiesLaveida Owens­White ,ChristianaCareJan Penoza ,CONTACTDelawareScott Phillips ,DivisionofDevelopmentalDisabilitiesServicesGloria Price ,Self­Advocate,DelawareAmputeeSupportGroupAlisha Raiford­Hall ,DivisionofDevelopmentalDisabilitiesServicesNancy Ranalli ,EasterSealsofDelaware&Maryland’sEasternShoreIlka Riddle ,CenterforDisabilitiesStudiesAl Rose ,DevelopmentalDisabilitiesCouncilPatty Shockley ,DivisionofDevelopmentalDisabilitiesServicesPaulette Smith ,Self­Advocate,BreatheforLifeBeverly Stapleford ,CenterforDisabilitiesStudiesWendy Strauss ,Governor’sAdvisoryCouncilforExceptionalCitizensKathy Stroh ,DivisionofPublicHealthAnnie Tanverdi ,CenterforDisabilitiesStudiesBrian Whittaker , Self­Advocate Jamie Wolfe ,Self­Advocate,CenterforDisabilitiesStudiesJin Wu ,CenterforDisabilitiesStudies Acknowledgements ManythankstoThomasKellyandAlishaRaiford­Hallfromthe DivisionofDevelopmentalDisabilitiesServices,DelawareHealthandSocialServicesformanagingtheHealthyDelawareanswithDis­abilities2010projectandcontributingtothereport,LisaGilmanfromthe CenterforAppliedDemographyandSurveyResearchattheUniver­sityofDelawarefordataanalysis,AnnieTanverdi,ErinVenturato,JinWu,TracyMann,JimSalt,BeverlyStapleford,andMichaelGamel­McCormickfromtheCenterforDisabilitiesStudiesattheUniversityofDelawareforassistancewithcollectingandenteringdataandhelpwitheditingandformattingthefinalreport.Inaddition,wewouldliketothankallthededicatedinterviewersandalltheparticipantswhowerewill­ingtocompletethesurvey. TheprojectwasmanagedandcoordinatedbytheDivisionofDevelop­mentalDisabilitiesServicesfromDelawareHealthandSocialServices.Ifyouareinterestedinmoreinformationaboutthisproject,contactThomasKelly,MD,MPH,BSNat(302)744­9600orthomas.kelly@state.de.us,orAlishaRaiford­Hallat(302)369­2186ext.255oralisha.raiford­hall@state.de.us. ThisprojectandtheinformationprovidedinthisreportwassupportedbyGrant/CooperativeAgreementNumberU59/CCU324600­01,CentersforDiseaseControlandPrevention(CDC),NationalCenteronBirthDefectsandDevelopmentalDisabilities.Thecontentofthisreportistherespon­sibilityoftheauthoranddoesnotnecessarilyrepresenttheviewsoftheCDC. ThisreportwasauthoredbyIlkaK.Riddle,PhD,ProjectCoordinator,CenterforDisabilitiesStudies,UniversityofDelaware. TableofContents AdvisoryPanelMembers.............................................................................................................2Acknowledgements........................................................................................................................3ListofTables&Figures................................................................................................................5SomeFactsaboutDelaware......................................................................................................6Executive Summary .....................................................................................................................7Introduction ...................................................................................................................................... 13 Purpose of the Healthy Delawareans with Disabilities 2010 Project ...............15 Mission of the Healthy Delawareans with Disabilities 2010 Project .................15 Healthy Delawareans with Disabilities Project Goals 2010 Project ..................15 Methodology .................................................................................................................................... 17 Reason for Survey ......................................................................................................................... 18 Preparation for Study .................................................................................................................. 18 Survey Participants ....................................................................................................................... 19 Data Collection ............................................................................................................................... 19 Data Analysis .................................................................................................................................... 20 Challenges and Strengths ...........................................................................................................20 Health,Wellness & Lifestyle Findings .................................................................................. 23 Demographic Information ....................................................................................................... 24 DisabilityStatus...........................................................................................................24 County,Gender,Race/Ethnicity,andAge...........................................................25 Education,Employment,andIncome.................................................................26General Health and Secondary Health Conditions ....................................................28 HealthStatus................................................................................................................28 SecondaryHealthConditions.....................................................................................29Lifestyle and Preventative Health Care ............................................................................ 32 PreventativeHealthCareandAccesstoCare.................................................32 PreventativeMen’sandWomen’sHealth...........................................................34 DietandExerciseHabits..............................................................................................37 SmokingandDrinkingHabits....................................................................................39 SexualActivity...................................................................................................................... 40 SexualAssault..................................................................................................................... 41 Wellness ..................................................................................................................................................... 44 SatisfactionwithLifeandSocial­EmotionalWellbeing..................................44 ThinkingAboutDisability...............................................................................................46 PerceptionsAboutHowOneWasTreatedByOthers..................................47Care Needs .............................................................................................................................................. 48 CareNeeds..........................................................................................................................48 Equipment............................................................................................................................. 50 Caregiver Needs ................................................................................................................................... 50 CaregiverDemographics...............................................................................................50 CaregiverChallenges.......................................................................................................51Recommendations ...............................................................................................................................53References..................................................................................................................................................56 ListofTables&Figures Tables Table1.Demographiccharacteristicsofsurveyrespondents,byprimarydisability...........................................................................................26Table2.Preventativehealthcareamongsurveyrespondents........................................................................................................................................35Table3.Eatinghabits,physicalactivitylevels,andweightissuesofsurveyrespondents,byprimarydisability.....................................38Table4.Overallmoodduringthepast30daysamongsurveyrespondents.........................................................................................................46Table5.Surveyrespondents’perceptionsofhowtheyweretreatedatworkorwhenseekinghealthcare.....................................47Table6.Frequencyinwhichsurveyrespondentsexperiencedphysicalsymptomsoremotionalupsetasa resultofhowtheyweretreatedinthepastyear...............................................................................................................................................48 Figures Figure1.PrimarydisabilityoftheHealthyDelawareanswithDisabilities2010ProjectHealthRisksSurveysample....................24Figure2.PrimarydisabilityasreportedbyrespondentsintheBRFSSsamplewhodisclosedthattheyhadadisability..............25Figure3.Percentofsurveyrespondentsreportingannualhouseholdincomelessthan$25,000,byprimarydisability...............27Figure4.Perceivedhealthstatusofsurveyrespondents....................................................................................................................................................28Figure5.Self­reportedhealthstatusofsurveyrespondents,byprimarydisability.............................................................................................29Figure6.Secondaryhealthconditionsofsurveyrespondents.......................................................................................................................................29Figure7.ComparisonofpercentofhighcholesterolandhighbloodpressureratesinthegeneralDelaware populationandDelawareanswhoparticipatedintheHDWDsurvey...................................................................................................30Figure8.ComparisonofpercentofarthritisratesinthegeneralDelawarepopulationandDelawareans whoparticipatedintheHDWDsurvey....................................................................................................................................................................31Figure9.ComparisonofpercentofdiabetesratesinthegeneralDelawarepopulationandDelawareans whoparticipatedintheHDWDsurvey....................................................................................................................................................................31Figure10.Barriersencounteredbysurveyrespondentswhentryingtoseeadoctororotherhealthcare providerinthepastyear......................................................................................................................................................................................................32Figure11.Typesofchallengesencounteredamongsurveyrespondentswhenseekinghealthcareinthepastyear.....................33Figure12.Preventativedentalcareofsurveyrespondents..............................................................................................................................................33Figure13.Percentofsurveyrespondentswhohaveeverhadasigmoidoscopyorcolonoscopy.............................................................36Figure14.Smokingstatusandalcoholconsumptionamongsurveyrespondents..............................................................................................39Figure15.Percentofsurveyrespondentswhoengagedinsexualactivityinthepastyear,byprimarydisability.............................40Figure16.Percentofsurveyrespondentswhousedacondomduringtheirlastsexualencounterandthereason(s)why.....41Figure17.Percentofsurveyrespondentswhohavebeenavictimofsexualassaultorattemptedsexual assaultintheirlifetime,bygender...................................................................................................................................................................................42Figure18.Percentofsurveyrespondentswhohavebeenavictimofsexualassaultorattemptedsexualassault intheirlifetime,byprimarydisability.............................................................................................................................................................................43Figure19.Relationshipofperpetratortosurveyrespondentreportingthatsomeonehadsexorattempted tohavesexwiththemwithouttheirconsentinthepastyear......................................................................................................................43Figure20.Lifesatisfactionamongsurveyrespondents,byprimarydisability..........................................................................................................44Figure21.Frequencyofsocialandemotionalsupportreceivedbysurveyrespondents...............................................................................45Figure22.Percentofsurveyrespondentswhothinkabouttheirdisabilityatleastonceaday,byprimarydisability....................46Figure23.Percentofsurveyrespondentswhoreceivedhelpwithpersonalandroutinecare,byprimarydisability...................49Figure24.Surveyrespondents’perceptionofwhattheyneedthemosthelpwith..........................................................................................49Figure25.Currentrequirementsfortheuseofspecialequipment,byprimarydisability...............................................................................50Figure26.Relationshipofpersonwhoassistssurveyrespondentneedingpersonalassistance.................................................................51Figure27.Greatestdifficultiesreportedbycaregiversofsurveyrespondents.....................................................................................................51 Some Facts about Delaware Delaware,the“FirstState,”isthesecondsmalleststateintheUnitedStateswithatotalareaof1,982squaremiles.ThecurrentDelawarepopulationisestimatedat843,524,whichmakesittheseventhleastpopulatedstate,includingtheDistrictofColumbia.1 Lo­catedontheEasternSeaboardoftheUnitedStates,DelawarehasshoresontheAtlanticOceanandDelawareBay.Delawarealsobor­dersNewJersey,Pennsylvania,andMaryland.Thestatemottois“LibertyandIndepend­ence.” Delawareisadiversestate.Themedianageis37.9yearsand51.5%ofthepopulationis female.Delaware’sracial­ethniccompositionis73.6%Caucasian,19.9%AfricanAmerican,and6.1%Hispanic/Latino.Almost15%ofthepopulationfiveyearsofageandolderhasoneormoredisabilities.2 Delawareconsistsofthreecounties:NewCastle,Kent,andSus­sex.MostofthepopulationofthestatelivesinNewCastleCounty(73.9%),while14.7%liveinKentCountyand11.3%liveinSussexCounty.Thestatecapital,Dover,islocatedinKentCounty.AlsolocatedinKentCountyisDoverAirForceBase,amajorlogisticalanchorfortheU.S.AirForceandtheArmedServicesMortuaryService.SussexCountyisknownforitsagri­cultureandbroiler­chickenindustry,aswellasitsbeautifulAtlanticcoastbeaches. Delawareisknownforitshistoricwaterfront,theduPontfamilymansions,beaches,fishing,chickenfarming,andfavorabletaxlaws. ExecutiveSummary Thisreportpresentsinformationaboutthehealth,wellness,disabilities,second­aryhealthconditions,andlifestylesofadultswithdisabilitiesinDelaware.Infor­mationfrom339adultswithphysical,sensory,cognitiveandlearningdisabilities,andmentalhealthconditionswascollectedfromMaytoDecember2006.Thesampleofparticipantswascollectedthroughserviceenrollmentlists,referrals,andoutreachtocommunityorganizationsandprovidesinsightintothewell­beingofadultswithdisabilitiesinDelaware. DemographicInformation Ofthe339participantswhoansweredthesurvey,morethanone­third(36.0%)hadaphysicaldisability.Thesecondmostrepresentedgroupinthesamplewaspersonswithcognitiveandlearningdisabilities(24.2%),followedbythosewithvi­sualimpairments(19.8%).Almostelevenpercent(10.9%)ofthesamplehadahearingimpairmentandjustoverninepercent(9.1%)reportedhavingamentalhealthcondition. AmajorityofrespondentslivedinNewCastleCounty(70.2%).NineteenpercentoftherespondentslivedinKentCountyand10.7%oftherespondentslivedinSussexCounty.Amajorityoftherespondentswerefemale(52.4%)andtheav­erageageoftheparticipantswas48years.Justover68%ofthesamplewereCaucasianwhile22.6%reportedtheirraceasAfricanAmericanand4.5%reportedtheirethnicityasHispanic/Latino. Ofthe339respondentsofthesurvey,morethan40%reportedcompletinghighschool.Twentypercent(20.2%)statedtheyhadnotcompletedhighschoolandalmost17.0%reportedgraduatingfromcollege.Only34.2%oftherespondentsreportedtheywereemployed.Another15.5%reportedthattheywereunem­ployedand27.4%reportedtheywereunabletowork.Amajority(54.7%)re­portedthattheirannualincomewaslessthan$15,000and67.1%reportedthattheirannualincomeswerelessthan$25,000. GeneralHealthandSecondaryHealthConditions Whenaskedabouttheiroverallhealth,amajorityofthesurveyrespondentsre­portedthattheirhealthwas“fair”or“poor.”Individualswithmentalhealthcondi­tionsreportedthehighestlevelof“fair”and“poor”healthperception(80.6%). Justover47%oftherespondentsreportedhavinghighcholesterolandjustover45%reportedhavinghighbloodpressure.TheseratesaregreaterthanforthegeneralDelawarepopulation.Almost40%ofthesamplereportedhavingarthritis;again,thisisahigherratethanforthegeneralDelawarepopulation.Respon­dentswithphysicaldisabilitiesandvisionimpairmentswerethemostlikelytore­porthavingarthritis.Finally,justunder21%ofallrespondentsreportedhavingdiabetes. LifestyleandPreventativeHealthCare Almostalloftherespondents(97.0%)reportedhavingaprimaryhealthcareproviderand91.4%reportedreceivingregularcheck­upsfromtheprovider.How­ever,asignificantnumberofrespondentsacknowledgedchallengestoobtaininghealthcare.Theseincludedlackoftransportationtohealthcareservices(16.5%),difficultyaccessingbuildingswherehealthcarewasprovided(11.3%),thecostofhealthcareservices(10.8%),beingabletoaccesshealthcareequip­ment(9.2%)andhealthcareservicesnotbeingavailable(6.0%). Therespondentswereaskedquestionsaboutpreventativehealthcare.Amajor­ityofmenover39yearsofage(57.5%)reportedhavinghadaprostate­specificantigen(PSA)testandalmost70%reportedhavinghadadigitalrectalexamsometimeduringtheirlives.Justover81%ofthewomenreportedhavinghadamammogramandalmost90%reportedhavinghadaclinicalbreastexaminationandjustover91%ofthewomenreportedhavinghadatleastonepapexam.Ofallparticipantsage50orolder,62.0%reportedhavinghadacolonoscopyorasigmoidoscopytoscreenforcoloncancer. Whenreportingontheirdietandexercisehabits,38.9%oftherespondentsstatedthattheyatetheCentersforDiseaseControlandPrevention(CDC)rec­ommendeddailyservingsoffruitsandvegetables.Justunder21%percentoftherespondentsreportedparticipatinginrecommendedlevelsofdailyphysicalactiv­ity.Thelargemajorityofrespondents(72.3%)reportedbeingoverweightorobese.Thoseindividualswithphysicalimpairments(57.9%)andhearingimpair­ments(54.5%)werethemostlikelytonotparticipateinrecommendedlevelsofphysicalactivity. Nineteenpercent(19.0%)ofthesurveyrespondentsreportedthattheywerecur­rentsmokers.ThisissimilartothepercentageofsmokersintheoverallDelawarepopulation.Duringthepastyear,almosthalf(47.8%)ofthoserespon­dentswhoreportedbeingsmokerstriedtoquitatleastforoneday.Personswithmentalhealthconditionswerethegroupofrespondentsmostlikelytosmoke(45.2%). Justover32%oftherespondentsreportinghavinghadanalcoholicdrinkduring thepast30days.Thispercentageissubstantiallylowerthanforthegeneralpop­ulationofDelawarewhoreporthavinghadanalcoholicdrinkduringthepast30days(57.0%).Ofthesub­groupsinthesampleforthissurvey,thepercentagere­portinghavinghadanalcoholicdrinkwithinthepast30monthsvariedwidely.Personswithhearingimpairmentsandvisionimpairments(55.6%and44.3%re­spectively)hadthehighestreportedpercentageofhavinghadanalcoholicdrinkduringthepast30days.Personswithmentalhealthconditionsandcognitivedis­abilities(29.6%and15.4%respectively)hadthelowestreportedpercentages. Overhalfoftherespondents(52.5%)answeredquestionsabouttheirsexualac­tivity.Ofthoseanswering,37.6%reportedthattheyhadengagedinsexualactiv­itywithinthepastyear.Almost32%ofthoseansweringthequestionsreportedhavinghadatleastonenewsexualpartnerwithinthepastyear.Approximately58%ofthosewhoreportedbeingsexuallyactivehadparticipatedinoralsexand83.1%ofthosereportingbeingsexuallyactiveengagedinsexualintercourseduringthepastyear.Personswithmentalhealthconditionsandhearingimpair­mentswerethemostlikelytoreportbeingengagedinsexualactivities(52.6%and52.9%respectively)andpersonswithcognitivedisabilitiesweretheleastlikelytoreporthavingengagedinsexualactivitiesduringthepastyear(26.2%).Ofalloftherespondentsreportingtheyweresexuallyactive,only32.7%re­portedusingacondomduringtheirlastsexualencounter.Ofthosewhodiduseacondom,20.0%reportedthattheyusedacondomtopreventpregnancy,20.0%reportedthattheyusedacondomtoavoidsexuallytransmitteddiseases,and60.0%reportedtheyusedacondomforbothreasons.Almost74.0%ofthosere­spondentswhoreportedbeingsexuallyactivestatedthattheythoughtcondomswereeither“effective”or“somewhateffective”atprotectingagainstHIV. Respondentswerealsoaskedaboutbeingvictimsofsexualassault.Ofallthewomenansweringthequestion,30.8%reportedhavingbeensexuallyassaultedand27.0%reportedhavingexperiencedanattemptedsexualassault.Ofallthemenansweringthequestion,7.7%reportedhavingbeensexuallyassaultedand11.3%reportedhavingexperiencedanattemptedsexualassault.Menandwomenwithmentalhealthconditionshadthehighestratesofreportedsexualas­sault. Thosereportingsexualassaultsorattemptedsexualassaultsidentifiedawidevarietyofperpetrators.Theseincludedacquaintances,neighborsorothernon­relatives(22.4%),formersignificantothers(19.0%),andstrangers(17.2%). Wellness Therespondentswereaskedabouttheirsatisfactionwiththeirlives.Alargema­jorityoftherespondentsindicatedtheywere“verysatisfied”or“satisfied”withtheirlives(80.4%).Almost20%indicatedthattheywere“dissatisfied”or“verydissatisfied”withtheirlives.Individualswithmentalhealthconditionsreportedthehighestpercentageofbeing“dissatisfied”or“verydissatisfied”withtheirlives(32.3%). Whenaskedaboutreceivingnecessarysupportsandservices,70.0%ofthere­spondentsstatedthatthey“always”or“usually”receivedthesocialandemo­tionalsupportstheyneeded.Asmallpercentageofrespondents(5.6%)reported“rarely”or“never”receivingthesocialandemotionalsupportstheyneeded.Thegroupsmostlikelytoreportthey“rarely”or“never”receivedthesupportstheyneededwereindividualswithhearingimpairments(10.8%)andindividualswithmentalhealthconditions(9.7%). Amajorityoftherespondents(56.8%)reportedthattheyeither“constantly”or“atleastonceaday”thinkabouttheirdisabilities.Justover18%oftherespondentsreported“never”thinkingabouttheirdisabilities.Whenaskedabouthowtheyweretreatedbyothersatwork,80.5%oftherespondentsstatedtheyweretreated“thesameas”or“betterthanothers”and81.0%reportedtheyweretreated“thesameas”or“betterthanothers”whenseekinghealthcare.Almostninepercentoftherespondentsfelttheyweretreated“worsethanothers”atworkandwhenseekinghealthcare.Individualswithmentalhealthconditionsre­portedfeelingtheyweretreated“worsethanothers”atwork(33.3%)andwhenseekinghealthcare(16.7%). CareNeeds Over63%ofrespondentsreportedtheyneededhelpwithroutinetaskssuchashouseholdchoresandshoppingand28.4%reportedtheyneededhelpwithper­sonalcareactivitiessuchaseating,bathing,anddressing.Individualswithvisualimpairmentshadthehighestpercentageofneedinghelpwithroutinetasksandpersonswithphysicaldisabilitieshadthehighestpercentageofneedingassis­tancewithpersonalcareactivities.Thetypesofpersonalcaresupportreportedbythesurveyrespondentsincludedassistancewithselfcare(36.1%),assistancewithmovingaround(19.6%),assistancewithlearningandremembering(18.0%),andassistancewithseeingandhearing(16.5%). Almost57%ofthesurveyrespondentsindicatedthattheyneededtousespecialequipmentbecauseoftheirdisabilities.Personswithhearingimpairments(81.1%),withphysicalimpairments(79.3%)andvisionimpairments(67.2%)weremorelikelytoreportneedingtousespecialequipmentthanwerepersonswithcognitivedisabilities(18.5%)andpersonswithmentalhealthconditions(16.1%). CaregiverNeeds Thesurveyrespondentswereaskediftheyhadassistancefromacaregiverandwhattheirrelationshipwastothecaregiver,iftheyhadone.Ofthoserespon­dentswhohadoneormorecaregivers,themajorityofrespondentsidentifiedtheircaregiversasfamilymembers(61.4%)suchasparents,adultchildren,and/orsiblings.Thirty­onepercentofthecaregiversworkingwithrespondentswerepaidprofessionalstaff.Otherrelativesandfriendscomprised7.6%ofthecaregiversoftherespondents. AspartoftheHealthyDelawareanswithDisabilities2010survey,ifcaregiverswerepresentduringtheinterview,theywereaskedanumberofquestionsabouttheirrolesandresponsibilities.Sixty­six(66)caregiverswerepresentduringtheinterviewsandagreedtorespondtoquestions.Ofthose66caregivers,39.4%in­dicatedthatcaregivingresponsibilitiesdidnotleaveenoughtimeforthemselves.Over22%reportedthattheircaregivingresponsibilitieswereafinancialburdenforthemand12.1%reportedthatcaregivingwasastressfulactivityforthem.Somecaregiversalsoreportedthattheirresponsibilitiesmadeitdifficulttoad­dresstheirownfamilyneeds(9.1%),thatcaregivinginterferedwiththeirprimaryworkresponsibilities(7.6%),thatitaffectedtheirfamilyrelationships(6.1%),andthatitaggravatedtheirownhealthconditions(3.0%). Recommendations TheHealthyDelawareanswithDisabilities2010ProjectAdvisoryPanelreviewedtheresultsofthissurvey.Thisreportoffersfourteenrecommendationsthatad­dressbothhealthpromotionandhealthawarenessforpersonswithdisabilities. Theserecommendationsneedtobecoordinatedacrosshealthcareserviceproviders,humanserviceproviders,advocacyagencies,anddirectserviceproviderswhoworkwithpersonswithdisabilities.Theserecommendationsneedtobeimplementedwiththeconsultationofpersonswithdisabilitiesandtheirfam­ilies. 1. Developafive­yearhealthandwellnessplanforadultswithdisabilities incollaborationwiththeGovernor’sCommissiononCommunity­BasedAlternativesforIndividualswithDisabilitiesandtheHDWD2010Advi­soryPanel. 2. Reviewhealthandwellnesseducation,awareness,andprevention materialsavailablefromstateagencies,healthproviders,hospitals,andotherhealthcaresourcesandensurethatthematerialsareavailableinformatsthatareaccessibletoallpersonswithdisabilities. 3. Educatephysiciansandotherhealthcareprovidersabouttheimpor­tanceofaddressingsecondaryhealthconditionswithpersonswithdis­abilities,preventingsecondaryhealthconditions,andmonitoringpersonswithdisabilitieswhoareatriskfororhavesecondaryhealthconditions. 4. Createagrantprogramforhealthcarefacilitiestoensurephysicaland informationaccessibilityofservicesforallpersonswithdisabilities. 5. Developandimplementapilotprogramtomakedentalcareservices availabletoallindividualswithdisabilities. 6. SupportthegeneralhealthcarepreventioninitiativesoftheDivisionof PublicHealthandworkwiththeDivisiontoensurethatdisabilityspecificinformationisincludedinpreventioneducationmaterials. 7. Provideeducationandgrantfundingforlocalrecreationandparks officesandprivatefitnesscenterstoensurethatallrecreationandfit­nessprogramsareaccessibletopersonswithdisabilities. 8. Developandimplementdisability­specificpreventioneducation programstoaddressriskyhealthbehaviors,includingsmoking,drink­ing,andunprotectedsex. 9. Developandimplementhealthpreventioneducationprogramsfordirect supportprofessionalsandfamilycaregivers. 10.Developandimplementdisabilityspecifichealtheducationprogramstoaddresshealthconcernsspecifictoadisabilitygroup. 11.Developamandatorycertificationandcredentialingprocessfordirectsupportprofessionals. 12.Supporttheeffectiveimplementationofrespitecareprogramsforfamiliesofpersonswithdisabilities. 13.Developandimplementasystematicdatacollectionandanalysisprocess,suchastheState’sBehavioralRiskFactorSurveillanceSystem(BRFSS),toidentifythecomprehensivehealthandpreventionneedsofpersonswithdisabilities. 14.SupporttheeffectiveimplementationoftheDelawareMedicaidBuy­Inprogram. Introduction TheHealthyDelawareanswithDisabilities(HDWD)2010projectisahealthandwellnessprogramthatfocusesonthehealthofpeoplewithdisabilitiesinDelaware.TheprojectisbasedontheHealthyPeople2010Initiative,anational10­yearplanthatsetshealthobjectivestohelpfederal,state,local,private,andcommunityagenciesandorganizationsintheireffortstopromotehealthandwell­ness.TheHDWD2010activitiescompletedinclude: • reviewingstate,administrative,andgeneraldataonhealthanddisability; • interviewingadultswithdisabilitiesandfamiliesofchildrenwithspecialhealthcareneedsabouttheirhealth,wellness,secondaryhealthcondi­tions,andlifestyles; • developinganAdvisoryPanelfromstate,community,andadvocacyor­ganizationstoactasastatewidehealthanddisabilityresource; • promotingdisability­focusedhealthprograms,includingasmokingcessa­tionprogramandafitnessprogramforadultswithdisabilities(incollabora­tionwiththeYesYouCanTM program); • providingtrainingforprofessionalsonearlydetectionofautism(FirstSigns,Inc.); • supportingthelocalAmputeeSupportGroup;and • developingawebsitewithusefulhealthanddisabilityinformationforDelawareans[http://www.hdwd2010.com]. HDWD2010iscoordinatedandmanagedbytheDivisionofDevelopmentalDis­abilitiesServices(DDDS),DelawareHealthandSocialServices(DHSS). CADSRalsoanalyzedseveralyearsofdatafromDelaware’sBehav­ioralRiskFactorSurveillanceSystem(BRFSS)survey(calledaretro­spectiveanalysis)andalsowroteadetailedreportaboutthiswork(foracopyofthereportvisitwww.hdwd2010.com). TheCenterforDisabilitiesStudies(CDS)andtheCenterforAppliedDemog­raphyandSurveyResearch(CADSR),bothattheUniversityofDelaware,workedwithDDDSonHDWD2010.CDStrainedandsupervisedinter­viewersfortheadultandchildhoodsurveys,recruitedparticipantsfortheinterviews,enteredsurveydata,andwrotereports. CADSRanalyzedinformationfromtheadultsurveyandwroteade­tailedtechnicalreportaboutthecollecteddata(foracopyofthere­ portvisitwww.hdwd2010.com). HDWD2010wasfundedbytheCentersforDiseaseControlandPrevention(CDC),NationalCenteronBirthDefectsandDevelopmentalDisabilities(NCBDDD)asacooperativeagreement. PurposeoftheHealthyDelawareanswithDisabilities2010Project ThepurposeofHDWD2010istoaddresstheissueshighlightedinChapter6“DisabilityandSecondaryConditions”oftheHealthyPeople2010Initiative.Delawareisoneof16statestoreceivefederalfundstoaddressthisfocusarea. MissionoftheHealthyDelawareanswithDisabilities2010Project ThemissionofHDWD2010istoimprovethelivesofDelawareanswithdisabilitiesbyemphasizinghealthpromotionandwellness.HDWD2010activitiespromotethismissionby: •increasingknowledgeaboutfactorsthataffectthehealthandwellnessof peoplewithdisabilitiesandcontributetoillnessesandsecondaryhealthconditions; • producingdisabilityspecifichealthpromotionandawarenessprograms;and • providingtechnicalassistancetointerestedpartners. HealthyDelawareanswithDisabilities2010ProjectGoals ThetwomaingoalsofthenationalHealthyPeople2010Initiativearetoincreasequalityandyearsofhealthylifeandtoeliminatehealthdisparitiesamongsub­groupsofpeople.TheHDWDprojecthasfivegoals: 1)Toincreasestatewideknowledgeaboutfactorsthataffectthehealthandwellnessofpeoplewithdisabilitiesandthatcontributetoillnessesandsecondaryhealthconditions. 2)TodevelopastatewideAdvisoryPaneltopromotehealthandwellnessforpeoplewithdisabilities.3)TodeveloptheAdvisoryPanelintoastatewideresourcefortechnicalas­ sistanceonissuesofhealthandwellnessforpeoplewithdisabilities.4)Toproduceareportonthehealthandwellnessofpeoplewithdisabilities.5)Todevelopseveralhealthandwellnessprogramsforpeoplewithdisabili­ ties. Methodology ReasonforSurvey TheHealthyDelawareanswithDisabilities(HDWD)2010projectsoughttolearnmoreabouthealth,wellness,secondaryhealthconditions,andlifestylesofadultswithdisabilitiesinDelaware.Onemethodtocollectinformationabouthealthcon­ditionsistoexaminedatafromtheBehavioralRiskFactorSurveillanceSystem(BRFSS).EachstateintheU.S.systematicallyconductstheCentersforDiseaseControlandPrevention’sBehaviorRiskFactorSurveillanceSystem(BRFSS)surveytotrackhealthconditionsandriskbehaviorsinthestate’sgeneralpopula­tion.WhiletheBRFSSisawidelyusedpopulation­basedtrackingsystem,itdoesnotincludeadultswhocannotparticipateinaphonesurveyorwholiveininstitu­tionssuchasmentalhealthorhealthcarefacilities.Thismeansthereisnoinfor­mationabouthealthconditionsandriskbehaviorsforsignificantportionsofthepopulationofpersonswithdisabilitiesinDelaware.ThisalsomeansthattheBRFSSmayunderrepresentadultswithhearingimpairments,cognitiveorlearn­ingdisabilities,andmentalhealthconditionsduetothedifficultyofcollectingin­formationthroughtelephoneinterviewsfromthesegroups. UponreviewofpreviouslycollectedBRFSSdata,theHDWD2010project,inco­ordinationwiththeDepartmentofPublicHealth(DPH)andtheCenterforAppliedDemographyandSurveyResearch(CADSR),addedtwodisabilityrelatedques­tionstotheBRFSSsurveyforfiscalyear2006.The16.0%ofBRFSSparticipantswhowereidentifiedashavingadisabilitywerealsoaskedabouttheirprimaryim­pairmentorhealthcondition.Themajorityreportedtheyhadaphysicaldisability.Adultswithsensoryimpairments,suchasdifficultiesseeingorhearing,andadultswithmentalhealthconditionswerealsorepresented.However,noadultswithcognitivedisabilitieswererepresentedinthesurvey.ThisanalysisindicatedthattheBRFSSsurveydoesnotreachthefullrangeofadultswithdisabilitiesinDelaware.Inordertoobtainmoredetailedinformationabouthealth,wellness,secondaryhealthconditionsandlifestyleofadultswithdisabilities,theHDWD2010surveywascreatedtoaddresstopicsthatwereofinteresttoDelaware. PreparationforStudy Toincreaseknowledgeaboutfactorsthataffecthealthandwellnessofpeoplewithdisabilitiesandtolearnaboutawidervarietyofpeopleinthisgroup,theHDWD2010projectdevelopedasurveytocollectthisinformationforDelaware­answithdisabilities.ThesurveywasbasedonsomeoftheBRFSSsurveyques­tionswithadditionsandmodificationssuggestedbystakeholdergroupsandtheHDWD2010AdvisoryPanel. TheHDWD2010adultsurveywasdesignedforusewithadultswithalltypesofdisabilitiesincludingindividualswithcognitivedisabilitiesandmentalhealthcon­ditions.Inaddition,adultswithdisabilitieswholiveinresidentialfacilitiesandgrouphomeswerealsoincluded. SurveyParticipants Individualswhoidentifiedthemselvesashavingaphysicaldisability,cognitiveorlearningdisability,sensoryimpairment,ormentalhealthconditionandwere18yearsoroldercouldparticipateinthesurvey.Thesurveysamplewasrecruitedthroughserviceenrollmentlists,referrals,healthfairs,andoutreachtocommu­nityorganizationsinDelaware. Theoriginalgoalfordatacollectionwas900respondents,threehundredfromthegroupsofadultswithphysical,cognitive,andsensorydisabilities.Oncedatacollectionbegan,itbecameapparenttotheHDWD2010AdvisoryPanelthatper­sonswithmentalhealthconditionsalsoneededtobeincludedinthedatacollec­tion. Aswithmostsurveyresearchwithtargetedpopulations,challengesoccurredidentifyingandcollectingdata.Throughthediligenteffortsofadvocacygroups,disabilityspecificsupportgroups,independentlivingcentersandtheeffortsofmanyotherorganizations,atotalof540adultswithdisabilitieswereidentifiedand339individualsinterviewed(37.6%oftheexpected900respondents). DataCollection TocollectinformationaboutDelawareanswithdisabilities,theAdultSurveyonHealth,Disabilities,andQualityofLifewasdeveloped.ThesurveywasbasedontheCentersforDiseaseControlandPrevention'sBehaviorRiskFactorSurveil­lanceSystem(BRFSS)survey. ThesurveywasdevelopedbytheManagementTeamoftheHDWD2010projectandapprovedbytheHDWD2010AdvisoryPanel.TheHumanSubjectReviewBoardofDelawareHealthandSocialServices(DHSS)reviewedthesurveyandgrantedpermissiontoconductthesurveywithadultDelawareanswithdisabili­ties.TheapprovalnoticefromtheHumanSubjectsReviewBoardwasreceivedonSeptember27,2005. InDecemberof2005,Delawarecommunitymemberswithaninterestindisabili­tiesandsomeexperiencewithinsocialservicesweretrainedtoconducttheadultsurveyin­personorbytelephone. Participantsforthesurveywererecruitedthroughstateserviceenrollmentlists,referrals,andoutreachtocommunityorganizations.Staffofstateagenciesre­viewedtheirregistriesandcalledindividuals(ortheirresidentialfacilityorlegalguardian)toaskpermissiontosendtheircontactinformationtotheCenterforDisabilitiesStudies(CDS).Ifindividualsagreed,thisinformationwassenttoCDS.Additionalparticipantsrecruitedthroughcommunityoutreachactivities completedsign­upsheets.ContactinformationforpotentialparticipantswasenteredintoapasswordprotectedMicrosoftACCESSdatabase.Atotalof540adultswithdisabilitieswererecruitedand339partici­pantscompletedthesurvey(62.8%). Trainedinterviewersscheduledandconductedinpersonortelephonesurveyswithparticipants.Interviewerscollectedin­formationbetweenMayandDecemberof2006.Interviewslastedfrom30to90minutesandwereheldatalocationcho­senbytheparticipantsorbyphone.Participantsweresent$15.00fortheirparticipationaftertheycompletedtheinter­ view. DataAnalysis DatafromcompletedsurveyswereenteredintoacomputerdatabasebyCDSstaff.CDSsentthefinaldatabasetotheCenterforAppliedDe­mographyandSurveyResearch(CADSR).CADSRthenanalyzedthedataandwrotethetechnicalreport(foracopyofthereportvisitwww.hdwd2010.com). ThedatawasanalyzedbetweenJanuaryandMarchof2007.CADSRusedtheStatisticalPackagefortheSocialSciences(SPSS14.0)toanalyzethedata.Basicdescriptivestatisticswerecalculated.ThetechnicalreportbyCADSRaboutthefindingsfromtheadultsurveywascompletedinMarch2007.ThefinalreportwascompletedinJune2007byCDS. ChallengesandStrengths Duetothechallengesofcollectinginformationaboutpersonswithdisabilities,thereareanumberoflimitationstotheinformationpresentedinthisreport.First,theindividualswhorespondedtotheseinterviewswerenotselectedrandomly. Theywererecruitedfromservicedeliverylistsorthroughadvertisementsandoutreach.Whilethisdoesnotdiminishtheimportanceoftheirresponsesinanyway,itdoesintroducetheriskofbiastothesample.Asecondcautionaboutthedatareportedhereisthatitmaynotberepresentativeofalladultswithdisabili­tiesinthestatebecauseoftherecruitmentprocess. Whilecautionshouldbetakenwheninterpretingtheinformationinthisreport,thisisoneofthefirsttimesthatacomprehensivegroupofadultswithdisabilitiesinDelawarehasbeenaskedabouttheirhealth,wellnessandhealthcareaccessexperiences.Oneofthestrengthsofthedatacollectedforthissurveyistherep­resentationofvarioussubgroupsofadultswithdisabilitiessuchasthosewithin­tellectualdisabilities,mentalhealthconditions,andadultslivinginresidentialfacilities,whohavenotbeenincludedinotherpopulation­basedhealthsurveys,suchastheBRFSS. Inthisreport,findingssummarizingknowledgeabouthealth,wellness,secondaryhealthconditions,andlifestylesofDelawareanswithdisabilitiesfromtheAdultSurveyonHealth,Disabilities,andQualityofLifearepresented.Inaddition,othersourceswereusedtoillustratefindingsortoprovideacontextforfindings. Health,Wellness & Lifestyle Findings DemographicInformation DisabilityStatus Respondentswereaskedtoidentifytheprimaryhealthconditionordisabilitytheyconsidertobetheirmostsignificantdisabilityorhealthcondition. The339participantsreportedfivetypesofdisabilities.Morethanone­thirdofin­dividuals(36.0%)reportedaphysicaldisability,followedbyindividualswithcogni­tiveorlearningdisabilities(24.2%).Almost20%reportedhavingavisionimpairmentand10.9%reportedhavingahearingimpairment.Individualswithmentalhealthconditions*represented9.1%ofthesample(seeFigure1). IncomparisontotheindividualsrespondingtotheBRFSSsurveysandindicatingtheyhaveadisability,theHDWD2010adultsurveyhasasmallerpercentageofparticipantswithphysicaldisabilitiesandgreaterrepresentationofindividualswithsensorydisorders.Therateofindividualswithmentalhealthconditionswasapproximatelythesame.TheHDWD2010adultsurveyhadover24%respon­dentswithcognitiveandlearningdisabilities.TheBRFSSsurveyhadnorespon­dentswithcognitiveorlearningdisabilities.SeeFigure2forthedistributionofdisabilitytypesoftherespondentsoftheBRFSSsurveys. Figure1.PrimarydisabilityoftheHealthyDelawareanswithDisabilities2010ProjectHealthRisksSurveysample Source:2006HealthyDelawareanswithDisabilities2010Survey;CenterforAppliedDemographyandSurveyResearch,UniversityofDelaware3 *Inthisreport,thedefinition“mentalhealthconditions”willencompassallsurveyparticipantsthatreportedintheHDWD2010surveythattheyhave“depression,anxiety,oremotionalimpairment.” Figure2.PrimarydisabilityasreportedbyrespondentsintheBRFSSsamplewhodisclosedthattheyhadadisability Source:RetrospectiveAnalysisofDelawareDatafromtheBehavioralRiskFactorSurveillanceSystem,CenterforAppliedDemography&SurveyResearch,UniversityofDelaware4 County,Gender,Race/Ethnicity,andAge InterviewersaskedtheHDWD2010surveyparticipantsdemographicquestions,suchastheircountyofresidence,theirrace/ethnicity,andtheirage.Surveypar­ticipantswerefromallthreeDelawarecounties.MostofthesurveyparticipantswerefromNewCastleCounty(70.2%),followedbyKentCounty(19.0%)andSussexCounty(10.7%).ThesenumbersapproximatethepopulationdistributionofDelaware. Amajorityofsurveyparticipantswerefemale(52.4%),whichalsoapproximatesDelaware’spopulation’sdistribution.Themixofmenandwomeninthevariousdisabilitygroupswassimilar.Theoneexceptionwasrespondentswithvisionim­pairmentswhere62.7%oftherespondentswerewomen. Thelargestracial/ethnicgroupinthesurveywasCaucasian(68.2%),followedbyAfricanAmerican/Black(22.6%)andHispanic/Latino(4.5%).ThesenumbersaresimilartoDelaware’soverallpopulation. Theaverageageofthesurveyparticipantswasapproximately48years.Theav­erageageofrespondentswithvisionimpairmentswas56years.Participantswithcognitiveorlearningdisabilitieswereyoungest;onaveragetheywere38yearsold.Table1illustratesthefindingsregardingcountyresidence,gender,race/ethnicity,andage. Table1.Demographiccharacteristicsofsurveyrespondents,byprimarydisability MentalCognitiveor HearingVision Physical HealthLearning ImpairmentImpairment Disability ConditionDisability Total (%)(%) (%) (%)(%) (%) County(n=337) Kent27.014.9 20.8 12.918.5 19.0 NewCastle64.967.2 68.3 74.276.5 70.2 Sussex8.117.9 10.8 12.94.9 10.7 Gender(n=338) Male48.637.3 45.1 48.459.3 47.6 Female51.462.7 54.9 51.640.7 52.4 Race/Ethnicity(n=337) Caucasian/White64.968.7 62.0 77.475.3 68.2 Black/AfricanAmerican27.025.4 24.0 19.417.3 22.6 OtherNon­White*5.41.5 5.8 7.4 4.7 Hispanic/Latino2.74.5 8.3 3.2 4.5 Age(n=339) 18­2413.53.0 8.2 16.124.4 12.4 25­347.5 6.6 19.414.6 9.1 35­4421.611.9 18.9 22.624.4 19.5 45­5432.422.4 25.4 16.128.0 25.4 55­6413.522.4 25.4 12.96.1 17.7 65andOlder18.932.8 15.6 12.92.4 15.9 AverageAge(inYears)50.156.4 50.4 42.538.2 47.9 *Allothernon­White(includingmulti­racial) Source:2006HealthyDelawareanswithDisabilities2010Survey;CenterforAppliedDemographyandSurveyResearch,UniversityofDelaware3 Education,Employment,andIncome HDWD2010surveyparticipantswereaskedabouttheirlevelofeducationattain­ment.Abouttwentypercent(20.2%)ofparticipantsreportedhavingearnedlessthanahighschooldiplomaandmorethan40%listedhighschoolastheirhighestlevelofeducation(40.8%).Overall,16.6%ofparticipantsgraduatedfromcollege. Individualswithhearingimpairmentsreportedhavingearnedthehighestpercent­ageofcollegedegrees(24.3%)followedbyadultswithvisionimpairments(22.7%).Delawareanswithcognitiveorlearningdisabilitieswerethegroupleastlikelytohavegraduatedfromcollege(8.1%).HDWD2010surveyparticipantswerealsoaskedabouttheiremploymentsta­tus.Only34.2%ofparticipantssaidtheywereemployed.Alargeminorityre­portedtheywereeitherunemployed(15.5%)orwereunabletowork(27.4%).Individualswithmentalhealthconditionsreportedthehighestun­employmentrate(29.0%).Individualswithhearingimpairmentsreportedthehighestemploymentrate(48.6%),followedbyindividualswithcognitiveorlearningdisabilities(46.9%). Surveyparticipantsalsoreportedontheirannualincome.Morethanhalf(54.7%)ofparticipantsreportedearninglessthan$15,000ayear.Thisnumberwashighestforpeoplewithmentalhealthconditions(78.3%),followedbypeoplewithcognitivedisabilitiesorlearningdisabilities(71.4%).Figure3illustratesthepercentageofrespondentswithyearlyhouseholdincomesoflessthan$25,000foreachdisabilitygroup. Figure3.Percentofsurveyrespondentsreportingannualhouseholdincomelessthan$25,000,byprimarydisability AppliedDemographyandSurveyResearch,UniversityofDelaware3 GeneralHealthandSecondaryHealthConditions HealthStatus Respondentswerealsoaskedabouttheirhealth.Almost40%saidtheirhealthwas“good”to“excellent,”whilemorethan60%felttheirhealthwas“fair”to“poor”(seeFigure4).InthegeneralDelawarepopulation,only13.0%de­ scribedtheirhealthas“fair”to“poor.”5Individualswithmentalhealthcon­ditions(80.6%)andindividualswithphysicaldisabilities(73.8%)weremorelikelytosaytheirhealthwas“fair”to“poor”thanindividualsinanyothergroup(seeFigure5). For46.4%ofrespondents,poorhealthpreventedthemfromgoingabouttheirusualactivitiesduringthe30dayspriortotheinterview.Again,respon­dentswithphysicaldisabilitiesandmentalhealthconditionswerethemostlikely tosaythattheirconditionaffectedtheirusualactivities(64.8%and61.3%re­ spectively). Figure4.Perceivedhealthstatusofsurveyrespondents Source:2006HealthyDelawareanswithDisabilities2010Survey;CenterforAppliedDemographyandSurveyResearch,UniversityofDelaware3 Figure5.Self­reportedhealthstatusofsurveyrespondents,byprimarydisability Source:2006HealthyDelawareanswithDisabilities2010Survey;CenterforAppliedDemographyandSurveyResearch,UniversityofDelaware3 SecondaryHealthConditions Surveyparticipantswereaskedaboutavarietyofsecondaryhealthconditions.Secondaryhealthconditionsarephysical,mental,orsocialdisordersthatcanbeprevented.Theycanoccurasadirectorindirectresultofaprimarydisabil­ityorhealthcondition.Secondaryhealthconditionsreportedinthissurveyin­cludehighcholesterol,highbloodpressure,heartconditions,diabetes,asthma,andarthritis(seeFigure6). Figure6.Secondaryhealthconditionsofsurveyrespondents AccordingtotheAmericanHeartAssociation,nearlyoneinthreeU.S.adultshashighbloodpressure.6Also,36.6millionAmericanshavecholesterollevelsof240mg/dL,whichisconsideredhighcholesterol.Bothconditionsincreasetheriskforheartdiseaseandstroke.Inthissurvey,47.1%ofparticipantsreportedhavinghighcholesteroland45.1%reportedhavinghighbloodpressure.Incontrasttoindividualswithdisabilities,only28.0%ofthegeneralDelawarepopulationre­portedhighbloodpressureandonly38.9%statedthattheyhavehighcholesterol(seeFigure7). Figure7.ComparisonofpercentofhighcholesterolandhighbloodpressureratesinthegeneralDelawarepopulationandDelawareanswhoparticipatedintheHDWDsurvey Research,UniversityofDelaware;3 CentersforDiseaseControlandPrevention,DelawareBRFSSData20055 Problemswithhighcholesterolandhighbloodpressureweremostprominentamongrespondentswithvisionimpairments,thegroupwiththeoldestaverageageofanyoftherespondentgroups.Individualswithcognitiveandlearningdis­abilities,thegroupwiththeyoungestreportedageofdisabilityspecificgroups,reportedthelowestratesofhighcholesterolandhighbloodpressure. Surveyparticipantswerealsoaskediftheyhadarthritis.AccordingtotheBRFSS2005,29.2%oftheoverallDelawareadultpopulationhasarthritis.5OfallHDWD2010respondents38.9%reportedthattheyhavearthritis.Individualswithphysi­caldisabilitiesweremostlikelytoreporttheyhavearthritisfollowedbyindividualswithvisionimpairments.Peoplewithcognitiveorlearningdisabilitieswereleastlikelytoreporthavingarthritis.Becausethegroupofindividualswithvisionim­pairmentsistheoldestagegroupinthesurveyandindividualswithcognitiveorlearningdisabilitiesistheyoungest,thelargernumberofindividualsreportingarthritismaydescribeageratherthandisabilitystatus.Figure8illustratesthearthritisratesforthegeneralDelawarepopulation(BRFSSdata)andforpeoplewithdisabilities. Figure8.ComparisonofpercentofarthritisratesinthegeneralDelawarepopulationandDelawareanswhoparticipatedintheHDWDsurvey Sources:2006HealthyDelawareanswithDisabilities2010Survey;CenterforAppliedDemographyandSurveyResearch,UniversityofDelaware;3 CentersforDiseaseControlandPrevention,DelawareBRFSSData20055 Diabetesisanothercommonsecondaryhealthcondition.OftheHDWD2010surveyparticipants20.5%ofparticipantsreportedtheyhavediabetes.The2005BRFSSdataindicatedthat8.6%oftheDelawarepopulationhasdiabetes(Figure9).Oftheindividualswhoreportedtheyhavediabetes,amajority(68.7%)indi­catedtheychecktheirbloodsugarlevelsatleastonceaday.However,thegroupsofindividualswithhearingimpairments(50.0%)andvisionimpairments(47.8%)arelesslikelytochecktheirlevelsdailythanindividualsinotherdisabil­itygroups. HDWD2010surveyparticipantswerealsoaskediftheyhaveeverhadorcur­rentlyhaveasthma.Amongthesurveyrespondents,8.3%reportedthattheirdoctororhealthcareprovidertoldthemtheyhaveasthma.Thisissimilartothe8.5%reportedlevelofasthmaforthegeneralDelawarepopulationfromtheBRFSS2005survey.5 Figure9.ComparisonofpercentofdiabetesratesinthegeneralDelawarepopulationandDelawareanswhoparticipatedintheHDWDsurvey Sources:2006HealthyDelawareanswithDisabilities2010Survey;CenterforAppliedDemographyandSurveyResearch,UniversityofDelaware;3 CentersforDiseaseControlandPrevention,DelawareBRFSSData20055 HDWD2010surveyrespondentswerealsoaskediftheyhaveheartdiseaseoriftheyeverhadaheartattackorstroke.Ofthesampleforthissurvey,7.4%re­portedhavinghadcoronaryheartdisease,5.0%reportedhavinghadaheartat­tackintheirlifetime,and6.5%reportedhavinghadastroke. LifestyleandPreventativeHealthCare TheHDWD2010surveyalsocollectedinformationaboutthelifestylesandhealthcareissuesofindividualswithdisabilities.Surveyquestionsaskedaboutaccesstohealthcareprovidersandservices,barriersexperiencedinaccessingcare,ex­ercisehabits,drinking,smoking,andsexualbehaviors. PreventativeHealthCareandAccesstoCare Almostallsurveyparticipants(97.0%)reportedthattheyhaveapersonaldoctororhealthcareprovider.Most(91.4%)alsosaidthattheyhadaroutinecheckupwithinthepastyear.Despitesuchahighnumberofparticipantshavingprovidersandreceivingcheck­ups,participantsalsoexperiencedchallenges withservices.Barriersthatpreventedindividualsfromvisitingahealthcareproviderincludedlackoftransportation(16.5%),whichwasparticularlytrueforindividualswithmentalhealthconditions,andcostofservices(10.8%)(seeFigure10). Accesstobuildings(11.3%)andequipment(9.2%),whichwasparticularlytrueforindividualswithphysicaldisabilities,andtheavailabilityofservicesthatwereneeded(6.0%),whichwasmostlyreportedbyindividualswithhearingimpair­ments,alsohinderedvisitinghealthcareproviders(seeFigure11). Figure11.Typesofchallengesencounteredamongsurveyrespondentswhenseekinghealthcareinthepastyear Source:2006HealthyDelawareanswithDisabilities2010Survey;CenterforAppliedDemographyandSurveyResearch,UniversityofDelaware3 Participantswerealsoaskedaboutpreventativedentalvisits.Participantswereaskedifandwhentheyhadlastseenadentist.Alargemajority(75.7%)saidtheyhadseenadentistwithinthepasttwoyears,and73.8%reportedhav­inghadtheirteethcleanedbyadentistordentalhygienist.Theseratesaresimilartothosefromthe2004BRFSSsurvey,inwhich77.2%ofthegeneralDelawarepopulationsaidthattheyhadvisitedthedentistordentalclinicwithinthepastyearforanyreason.7Despitethesepromisingfindings,therewerestillalmostaquarter(24.3%)ofindividualswithdisabilitieswhoreportednotreceivingregulardentalcare(seeFigure12). Source:2006HealthyDelawareanswithDisabilities2010Survey;CenterforAppliedDemographyandSurveyResearch,UniversityofDelaware3 PreventativeMen’sandWomen’sHealth Forpreventionandearlydetectionofsomeillnesses,itisimportanttoconductmedicalscreenings,testsandexamsonaregularbasis.Formen,theProstate­SpecificAntigen(PSA)testandthedigitalrectalexamarerecommendedtoscreenforprostatecancer.Forwomen,clinicalbreastexamsandmammogramsarerecommendedtoscreenforbreastcancerandthepaptest(alsocalledpapsmear)isrecommendedtoscreenforcervicalcancer.Forbothwomenandmenovertheageof50years,acolonoscopyorsigmoidoscopyisrecommendedtoscreenforcoloncancer. RecommendationsaboutwhenandifmenshouldhaveaPSAtestordigitalrec­talexamvary;however,accordingtotheNationalCancerInstitute(NCI),Medicareprovidescoverageforannualexamsformen50yearsandolder.8In thissurvey,menage39andolderwereaskediftheyeverhadaPSAtest anddigitalrectalexamandwhenitoccurred.Morethanhalf(57.5%)re­ortedtheyhadaPSAtestand69.7%saidtheyhadadigitalrectalexamatsomepointintheirlifetime(seeTable2).Formostmen,thePSAtest(77.0%)anddigitalrectalexam(59.7%)werecon­ductedwithinthepastyear. ItisrecommendedbytheAmericanCancerSocietythatwomenage20andolderhaveclinicalbreastexamsatleasteverythreeyearsandwomenage40andoldereveryyear.9TheU.S.Depart­ mentofHealthandHumanServices(DHHS),10 theNationalCan­cerInstitute(NCI),11 andtheAmericanMedicalAssociation(AMA)12 recommendscreeningmammogramseveryyearforwomenage40and older.Ifthereisahistoryofbreastcancerinthefamily,clinicalbreastexams andmammogramsmayberecommendedmorefrequently.IntheHDWD2010 survey,81.1%ofallwomensaidthattheyhavehadamammogramatsome pointintheirlifetimeand89.8%reportedthattheyhavehadatleastoneclinical breastexamintheirlifetime(seeTable2).Thegroupsleastlikelytohavehada mammogramwerewomenwithmentalhealthconditions(62.5%)andwomen withcognitiveorlearningdisabilities(62.5%).Whilethesenumbersshowthata largemajorityofwomenreceiveregulargynecologicalcheck­ups,theyalsoillus­ tratethatover10%ofwomenacrossdisabilitygroupshavenotreceivedthispre­ ventativecare. Table2.Preventativehealthcareamongsurveyrespondents Men'sHealth*EverhadaPSATest(n=107)WithinPastYearWithinthePast2YearsWithinPast5Years5orMoreYearsAgo HearingImpairmentVisionImpairment(%)(%)60.078.988.986.76.711.16.7 PhysicalDisability(%)59.568.222.74.54.5 MentalHealthConditionCognitiveorLearningDisability(%)(%)60.036.066.777.816.722.216.7 Total(%)57.577.011.56.64.9 EverhadaDigitalRectalExam(n=109)WithinPastYearWithinthePast2YearsWithinPast5Years5orMoreYearsAgo 60.077.811.111.1 80.056.337.56.3 73.758.325.016.7 80.044.433.311.111.1 57.764.37.17.121.4 69.759.723.69.76.9 DiagnosedwithProstateCancer(n=113) 6.7 5.3 2.4 3.6 3.5 Women'sHealthEverhadaMammogram(n=175) 73.7 90.5 90.9 62.5 62.5 81.1 EverhadaClinicalBreastExam(n=175) 94.7 90.5 90.9 93.8 81.8 89.8 EverhadaPapTest(n=152)WithinPastYearWithinthePast2YearsWithinPast5Years5orMoreYearsAgo 10077.816.75.6 95.265.810.513.210.5 89.461.417.58.812.3 93.873.36.720.0 84.883.38.34.24.2 91.469.113.29.97.9 *Askedonlyofmalesurveyrespondents>39yearsold Source:2006HealthyDelawareanswithDisabilities2010Survey;CenterforAppliedDemographyandSurveyResearch,UniversityofDelaware3 TheU.S.DepartmentofHealthandHumanServicesrecommendsthatwomenage21yearsandolderhaveregularpaptests.13 Womenrespondentswereaskediftheyhaveeverhadapaptestandwhenitoccurred.Ofallwomenwhoansweredthisquestion,91.4%reportedthattheyhavehadapaptestatsomepointintheirlifetimeand82.3%statedthattheyhavehaditwithinthepasttwoyears(seeTable2).For17.8%ofallwomen,thelastpaptestoccurredfiveyearsagoorlongerandalmost9%reportedthattheyhaveneverhadapaptest. Menandwomenwhowere50yearsandolderwereaskediftheyhaveeverhadacolonoscopyorsigmoidoscopytoscreenforcoloncancer.Sixty­twopercent(62.0%)ofallmenandwomenover50yearsintheHDWD2010surveyreportedtheyhavehadthistestdoneatsomepointduringtheirlifetime,61.6%withinthepasttwoyears(seeFigure13).Inthe2004DelawareBRFSSsurvey,62.0%ofthegeneralDelawarepopulationofmenandwomen50yearsandolderreportedthattheyhavehadacolonoscopyorsigmoidoscopydonetoscreenforcoloncancer.7Almost40%ofboththegeneralpopulationandadultswithdisabilitiesre­portedthattheydonotreceivecolonoscopiesaspartoftheirpreventativehealthcare. Figure13.Percentofsurveyrespondentswhohaveeverhadasigmoidoscopyorcolonoscopy Source:2006HealthyDelawareanswithDisabilities2010Survey;CenterforAppliedDemographyandSurveyResearch,UniversityofDelaware3 DietandExerciseHabits Dietandexerciseinfluencetheoverallhealthofindividuals.TheCentersforDiseaseControlandPrevention(CDC)recommendthatpeopleeatfiveserv­ingsoffruitsandvegetablesadayandthatindividualsparticipateinmoderate­in­tensityactivitiessuchasabriskwalkforatleast30minutesaday,fivetimesaweek,orparticipateinvigorous­intensityactivitiessuchasrun­ ningonatreadmillorstairwalkingforatleast30minutesaday, Almost 50% of threedaysperweek. survey respondents do not engage in any RespondentsoftheHDWD2010surveywereaskedaboutthe type of physical activity. amountofvegetablesandfruitstheyeatperdayandtheirexercis­ inghabits.Only38.9%ofrespondentsreportedthattheyeatthe recommendedamountoffruitsandvegetables.Also,49.7%ofsur­ veyparticipantsstatedthattheyengageinlittletonophysicalactiv­ ityonaregularbasisandonly20.8%reportedthattheyengagein sufficientphysicalactivity.Thegroupsleastlikelytoparticipatein physicalactivitieswereindividualswithphysicaldisabilities(57.9%) andindividualswithhearingimpairments(54.5%). ManyoftheHDWD2010participants(72.3%)reportedtheyare overweightorobese.Individualswithvisionimpairmentsweremost likelytoreportbeingoverweightorobese(81.0%),followedbyindi­ vidualswithmentalhealthconditions(77.4%),andpeoplewith hearingimpairments(72.3%).Whenexaminingobesityalone,partic­ ipantswhohavementalhealthconditionsweremostlikelytobe obese(48.4%)followedbyindividualswhohaveacognitiveorlearningdisability. Thoughamajorityofrespondentsreportedthattheyareoverweightorobese,only38.3%reportedthattheyhavereceivedadvicefromtheirdoctorsabouttheirweightandonly53.7%statedthattheyarecurrentlytryingtoloseweight.(SeeTable3forasummaryofeating,physicalactivity,andweightcharacteristicsoftheHDWD2010respondents.) Table3.Eatinghabits,physicalactivitylevels,andweightissuesofsurveyrespondents,byprimarydisability Mental Cognitive or Hearing Vision Physical Health Learning Impairment Impairment Disability Condition Disability Total (%) (%) (%) (%) (%) (%) WeightStatus*(n=328)NeitherOverweightnorObese 27.8 19.0 31.9 22.6 30.4 27.7 OverweightObese 41.730.6 42.938.1 26.142.0 29.048.4 25.344.3 31.141.2 ReceivedadvicefromDoctoraboutWeight(n=339) 27.0 34.3 37.7 35.5 48.8 38.3 PhysicalActivity(n=312)MeetsCDCRecommendationsforPhysicalActivityInsufficientActivitytomeetCDCRecommendationsforPhysicalActivityNophysicalactivity 18.227.354.5 22.625.851.6 14.028.157.9 14.848.137.0 32.928.938.2 20.829.549.7 WeightControlCurrentlyTryingtoLoseWeight(n=337) 51.4 55.2 49.6 64.5 55.6 53.7 TryingtoMaintainCurrentWeight(n=338) 70.3 86.6 66.9 83.9 70.7 73.7 ChangedDiettoTrytoLoseorMaintainCurrentWeight(n=339)EngaginginPhysicalActivityorExercisetolowerorkeepfromgainingweight(n=337) 56.839.9 67.234.3 49.229.8 67.754.8 59.853.7 57.839.8 ConsumestheRecommendedDailyAllowanceofFruitsandVegetablesperDay** 34.3 45.2 33.3 30.0 48.6 38.9 *WeightstatusismeasuredbytheBodyMassIndex(BMI);Formula:weight(lb)/[height(in)]2x703**>=5servingsoffruitsandvegetablesperday Source:2006HealthyDelawareanswithDisabilities2010Survey;CenterforAppliedDemographyandSurveyResearch,UniversityofDelaware3 SmokingandDrinkingHabits Smokingisassociatedwithmanyhealthrisksandmaynegativelyaffectaperson’shealth.Between1997and2001,cigarettesmokingcaused438,000deathseachyearand,onaverage,smokingreducedlifeexpectancybyapproximately14years.14 Mostdeathsofsmokersoccurredfromlungcancer,chronicobstructivepulmonarydisease,andheartdisease. Delaware2005BRFSSinformationfoundthat20.6%ofthegeneralDelawarepopulationreportedbeingsmokers5,similartothefindingsamongDelawareanswithdisabilities.IntheHDWD2010survey,19.0%ofallparticipantsreportedthattheyaresmokersand23.5%reportedthattheywereformersmokers(seeFigure14).Fifty­sevenpercent(57.4%)statedthattheyneversmokedintheirlifetime.Ofallrespondentswhosmoked,47.8%reportedthattheytriedtostopsmokingforoneormoredaysduringthelastyear.Individualswithmentalhealthconditions(45.2%),followedbyindividualswithhearingimpairments(21.6%),weremostlikelytoreportthattheywerecurrentsmokers.Individualswithcognitiveorlearningdisabilities(11.1%)andwithvisionimpairments(12.1%)wereleastlikelytoreportthattheysmoked. Figure14.Smokingstatusandalcoholconsumptionamongsurveyrespondents Source:2006HealthyDelawareanswithDisabilities2010Survey;CenterforAppliedDemographyandSurveyResearch,UniversityofDelaware3 Delaware2005BRFSSdataindicatedthat57.0%ofadultsinthegeneralDelawarepopulationhavehadatleastonealcoholicdrinkwithinthelast30days.5ThepercentageofindividualswithdisabilitiesintheHDWD2010surveyreportingtheyhadhadatleastonedrinkwithinthepast30dayswasmuchsmaller(32.4%)(seeFigure14).Thepercentagesvariedconsiderablyamongdisabilitygroups.Respondentswithhearing(55.6%)andvisionimpairments(44.3%)weremuchmorelikelytoreportthattheyconsumedatleastonealco­holicdrinkinthepast30daysthanindividualswithmentalhealthconditions(29.6%)andindividualswithcognitiveorlearningdisabilities(15.4%).Ofalltheadultswhoreportedthattheydodrinkoccasionally,3.8%reportedthattheybingedrink(fiveormorealcoholicdrinksonanyoneoccasion).Bingedrinkingwasmuchmoreprominentamongindividualswithhearingimpairments(15.2%)thananyotherdisabilitygroup. SexualActivity RespondentsoftheHDWD2010surveywereaskedabouttheirsexualactivity. Of all survey Atotalof178respondents(52.5%ofthetotalsample)answeredquestions respondents who abouttheirsexualhistoryandactivities.Ofthose178,37.6%reportedthatanswered questions about theyhadengagedinsexualactivitiesinthepastyear,and31.8%reported their sexuality, 58% thattheyhadatleastonenewpartnerwithinthepastyear.Approximately participated in oral sex and 58%oftherespondentsengagedinoralsexand83.1%engagedinsexual 83% had sexual intercourse. intercourse.Individualswithmentalhealthconditions(52.6%)andindividu­Only 33% used a con­ alswithhearingimpairments(52.9%)weremostlikelytoreportthatthey dom during sexual hadengagedinsexualactivitiesandindividualswithcognitiveorlearning activities. disabilities(26.2%)wereleastlikelytoreportthattheyhadengagedinsexualactivitiesinthepastyear(seeFigure15). Source:2006HealthyDelawareanswithDisabilities2010Survey;CenterforAppliedDemographyandSurveyResearch,UniversityofDelaware3 Only32.7%ofrespondentswhoreportedbeingsexuallyactivestatedthattheyusedacondomduringtheirlastsexualactivity.Participantswereaskedwhytheyusedacondomorotherprotectivedeviceduringtheirlastsexualencounter.Twentypercent(20.0%)reportedusingcondomstopreventpregnancy,20.0%toprotectagainstdiseases,and60.0%reportedbothreasons(seeFigure16). Source:2006HealthyDelawareanswithDisabilities2010Survey;CenterforAppliedDemographyandSurveyResearch,UniversityofDelaware3 Thoughonly32.7%ofthesexuallyactiveHDWD2010respondentsreportedthattheyusedacondomduringsexualactivities,73.9%thoughtthatcondomswere“veryeffective”or“somewhateffective”inprotectingagainstHIV. HDWD2010surveyparticipantswereaskediftheyhadeverbeentreatedforsexuallytransmitteddiseases.Ofallrespondents,13.6%reportedthattheyweretreatedforasexuallytransmitteddiseaseorinfectionwithinthepastfiveyears. SexualAssault HDWD2010surveyparticipantswereaskediftheywereeversexuallyas­saultedorifsomeoneeverattemptedtosexuallyassaultthem.Ofallmalerespondents,11.3%reportedthatsomeonehadattemptedtosexuallyas­saultthem,and7.7%reportedthatsomeonehadsexwiththemwithouttheirconsent.Ofallfemalerespondents,27.0%reportedthatsomeonehadattemptedtosexuallyassaultthem,and30.8%reportedthatsomeonehadsexwiththemwithouttheirconsent(seeFigure17).Thesearemuchhigherpercentagesthanforwomeninthegeneralpopulation.IntheDelaware2005BRFSSsurvey,womenage18yearsandolderwereaskedifanyonehadsexwiththemwithouttheirconsentintheirlifetime.Justfewerthantwelvepercent(11.8%)reportedthatsomeonehadsexwiththemwithouttheirconsent.15 Figure17.Percentofsurveyrespondentswhohavebeenavictimofsexualassaultorattemptedsexualassaultintheirlifetime,bygender Source:2006HealthyDelawareanswithDisabilities2010Survey;CenterforAppliedDemographyandSurveyResearch,UniversityofDelaware3 Whenexaminingsexualassaultbyprimarydisabilitycategory,respondentswithmentalhealthconditionsweretwiceaslikelytoreportthattheyhadbeensexu­allyassaulted(41.4%)thananyoftheotherdisabilitygroups(seeFigure18). Individualswithhearingimpairmentsweretheleastlikelytoreportthat Most likely sex­ theyhadbeensexuallyassaulted(8.6%).Individualswithmentalhealthual perpetrators conditionsalsoweremostlikelytoreportthatsomeonehadattempted were acquaintances and tosexuallyassaultthem(35.7%).Individualswithvisionimpairmentsneighbors followed by wereleastlikelytoreportthatsomeonehadtriedtosexuallyassault former significant oth­ them(14.8%). ers and complete strangers. Surveyparticipantswhoreportedattemptedsexualassaultandsexualas­ saultidentifiedawidevarietyofperpetrators.Perpetratorsincludedacquain­tances,neighborsorothernon­relatives(22.4%),formersignificantothers(19.0%),andcompletestrangers(17.2%)(seeFigure19). Source:2006HealthyDelawareanswithDisabilities2010Survey;CenterforAppliedDemographyandSurveyResearch,UniversityofDelaware3 Figure19.Relationshipofperpetratortosurveyrespondentreportingthatsomeonehadsexorattemptedtohavesexwiththemwithouttheirconsentinthepastyear Source:2006HealthyDelawareanswithDisabilities2010Survey;CenterforAppliedDemographyandSurveyResearch,UniversityofDelaware3 Wellness SatisfactionwithLifeandSocial­EmotionalWellbeing TheHDWD2010participantswereaskedquestionsabouttheirsatisfactionwiththeirlivesandthequalityoftheirlivesasindividualswithdisabilities.Surveypar­ticipantswereaskedabouttheirgenerallifesatisfaction;satisfactionwiththeso­cialandemotionalsupporttheyreceive;howoftentheyfeltsad,anxious,andrestless;andhowoftentheywerefullofenergywithina30­dayperiod. Themajorityofsurveyrespondentsstatedthattheywere“verysatisfied”or“sat­isfied”withtheirlives(80.4%),butalmost20%reportedthattheywereeither“dissatisfied”or“verydissatisfied”withtheirlives(seeFigure20).Individualswithmentalhealthconditions(32.3%)weremostdissatisfiedwiththeirlives.Individu­alswithvisionimpairments(87.9%)andcognitiveorlearningdisabilities(87.8%)weremostsatisfiedwiththeirlives. Figure20.Lifesatisfactionamongsurveyrespondents,byprimarydisability Source:2006HealthyDelawareanswithDisabilities2010Survey;CenterforAppliedDemographyandSurveyResearch,UniversityofDelaware3 Whenaskedaboutparticipants’socialandemotionalsupports,suchashavingfriendsorrelativesthatprovidesupport,70.0%reportedthattheyalwaysorusu­allyreceivedthesupporttheyneed,and24.3%reportedthattheysometimesre­ceivedthesupporttheyneed(seeFigure21).Asmallpercentage(5.6%)reportedthattheyrarelyorneverreceivedthesocialandemotionalsupporttheyneed.Thegroupsthatweremostlikelytoreportthattheyrarelyorneverre­ceivedthesupportstheyneedwereindividualswithhearingimpairments(10.8%)andindividualswithmentalhealthconditions(9.7%). Source:2006HealthyDelawareanswithDisabilities2010Survey;CenterforAppliedDemographyandSurveyResearch,UniversityofDelaware3 Onaverage,surveyrespondentsfelthealthyandfullofenergyon16.3dayswithina30­dayperiod.Respondentsreportedfeelingsadordepressedon6.7days,worriedandanxiouson8.2days,andreportednotgettingenoughrestorsleepon9.6dayswithina30­dayperiod.Individualswithmentalhealthcondi­tionsandindividualswithphysicaldisabilitiesreportedthehighestoccasionsoffeelingsadordepressed,worriedoranxious,andnotgettingenoughrestorsleep(seeTable4).Peoplewithcognitiveorlearningdisabilitiesreportedthehighestnumberofdaysoffeelinghealthyandfullofenergy(22.3days). Table4.Overallmoodduringthepast30daysamongsurveyrespondents AverageNumberofDaysfeltSad,BlueorDe­pressed(n=310) HearingImpairmentVisionImpairment6.85.3 PhysicalDisability7.4 MentalHealthConditionCognitiveorLearningDisability12.14.4 Total 6.7 AverageNumberofDaysfeltWorried,Tense,orAnxious(n=314) 6.1 7.7 9.8 10.9 6.0 8.2 AverageNumberofDaysdidnotgetEnoughRestorSleep(n=320) 9.3 7.9 11.3 11.9 7.3 9.6 AverageNumberofDaysfeltHealthyandFullofEnergy(n=312) 19.6 15.8 12.6 12.4 22.3 16.3 Source:2006HealthyDelawareanswithDisabilities2010Survey;CenterforAppliedDemographyandSurveyResearch,UniversityofDelaware3 ThinkingAboutDisability Surveyrespondentswereaskedifandhowoftentheythinkabouttheirdisabili­Almost57%ofties(seeFigure22).Alargenumberofparticipantsreportedthattheythinkei­surveyrespondentstherconstantly(30.8%)oratleastonceaday(26.0%)abouttheir thinkeitherconstantlydisabilities.Only18.4%reportedthattheyneverthinkabouttheirdisabilities. oratleastonceadayThegroupthatthinksthemostabouttheirdisability(constantlyoratleast abouttheirdisability.onceaday)isindividualswithmentalhealthconditions(70.9%). Figure22.Percentofsurveyrespondentswhothinkabouttheirdisabilityatleastonceaday,byprimarydisability Source:2006HealthyDelawareanswithDisabilities2010Survey;CenterforAppliedDemographyandSurveyResearch,UniversityofDelaware3 PerceptionsAboutHowOneWasTreatedbyOthers HDWD2010surveyparticipantswereaskedhowtheyfeltothersatworkorathealthcareproviderstreatedthembecauseoftheirdisability.Ofallrespondents,80.5%statedthattheyweretreatedthesameasothersorbetterthanothersatwork,and81.0%feltthatthiswasalsotruewhenseekinghealthcare(seeTable5).Ontheotherhand,8.5%ofparticipantsfeltthattheyweretreatedworseatworkandwhenseekinghealthcare.Individualswithmentalhealthconditionsweremostlikelytofeelthattheyweretreatedworsethanothersatwork(33.3%)orwhenseekinghealthcare(16.7%). Table5.Surveyrespondents’perceptionsofhowtheyweretreatedatworkorwhenseekinghealthcare Mental Cognitive or Hearing Vision Physical Health Learning Impairment Impairment Disability Condition Disability Total (%) (%) (%) (%) (%) (%) AtWork(n=118WorsethanOthers 12.5 12.5 33.3 2.6 8.5 TheSameasOthers 81.3 78.3 53.1 33.3 55.3 61.0 BetterthanOthers 6.3 13.0 18.8 11.1 31.6 19.5 WorsethanSome/ BetterthanOthers 8.7 15.6 22.2 10.5 11.0 WhenseekingHealth care(n=321WorsethanOthers 12.1 6.2 7.0 16.7 6.4 8.1 TheSameasOthers 66.7 58.5 58.3 50.0 48.7 56.1 BetterthanOthers 18.2 30.8 22.6 13.3 30.8 24.9 WorsethanSome/ BetterthanOthers 3.0 4.6 12.2 20.0 14.1 10.9 Source:2006HealthyDelawareanswithDisabilities2010Survey;CenterforAppliedDemographyandSurveyResearch,UniversityofDelaware3 Surveyparticipantswerealsoaskediftheyexperiencedanyphysicalsymptomssuchasaheadache,upsetstomach,orpoundingheart,oriftheybecameemo­tionallyupsetasaresultofhowtheyweretreated.Ingeneral,surveyrespon­dentsreportedthattheyexperiencedmoreemotionalupsetsthanphysicalsymptomsinresponsetothewaytheyweretreated.Sixty­onepercent(61%)ofparticipantsreportedthattheyhadexperiencedemotionalupsetasaresultofhowotherstreatedthemand40.4%saidthattheyhadexperiencedphysicalsymptomsasaresultofhowothershadtreatedthem.However,theoverallnum­bersofbeingphysicallyoremotionallyupsetconstantlyoratleastonceadaywerelow(seeTable6). Table6.Frequencyinwhichsurveyrespondentsexperiencedphysicalsymptomsoremotionalupsetasaresultofhowtheyweretreatedinthepastyear Mental Cognitive or HearingIm­ VisionIm­PhysicalDis­ Health Learning pairment pairment ability Condition Disability (%) (%) (%) (%) (%) Total(%) PhysicalSymptoms(e.g., headache,stomachacheConstantly 5.7 3.3 1.8 3.4 2.3 AtLeastOnceperDay 2.9 1.6 7.1 6.9 5.6 5.2 AtLeastOnceperMonth 11.4 18.0 21.2 31.0 27.8 21.9 AtLeastOnceperYear 2.9 8.2 11.5 27.6 9.7 11.0 Never 77.1 68.9 58.4 31.0 56.9 59.7 EmotionalUpsetConstantly 6.1 3.3 6.0 6.9 1.3 4.4 AtLeastOnceperDay 3.3 9.4 6.9 8.0 6.7 AtLeastOnceperMonth 30.3 27.9 32.5 44.8 37.3 33.7 AtLeastOnceperYear 18.2 14.8 20.5 20.7 8.0 16.2 Never 45.5 50.8 31.6 20.7 45.3 39.0 Source:2006HealthyDelawareanswithDisabilities2010Survey;CenterforAppliedDemographyandSurveyResearch,UniversityofDelaware3 CareNeeds CareNeeds Manyindividualswithdisabilitiesneedhelpwiththeirpersonalcaresuchaseat­Almost thirty per­ ing,bathing,anddressing,orroutinecaresuchashouseholdchores,shop­ cent (28%) of partici­ ping,andothernecessarybusiness(seeFigure23).Overtwenty­eightpants need assistance with percent(28.4%)oftheHDWD2010samplereceivedassistancewithper­eating, bathing, and dressing sonalcareand63.1%receivedassistancewithroutinecare.Individualsand 63% receive assistance withphysicaldisabilitiesweremostlikelytoreportthattheyreceivehelp with routine tasks, such as withpersonalcare(45.5%)followedbypeoplewithcognitiveorlearning household chores and disabilities(32.9%).Threeofthedisabilitygroupsreportedrelativelyhighshopping. numbersofreceivinghelpwithroutinecare;76.9%ofindividualswithvisionimpairments,71.6%ofindividualswithcognitiveorlearningdisabilities,and67.2%ofindividualswithphysicaldisabilities. Figure23.Percentofsurveyrespondentswhoreceivedhelpwithpersonalandroutinecare,byprimarydisability Source:2006HealthyDelawareanswithDisabilities2010Survey;CenterforAppliedDemographyandSurveyResearch,UniversityofDelaware3 HDWD2010surveyrespondentswerealsoaskedaboutthespecifictasks,activi­ties,orskillsforwhichtheyneededhelp(Figure24).Respondentsreportedthattheyneededthemosthelpwithself­care,suchaseatinganddressing(36.1%),followedbymovingaround(19.6%),learningandremembering(18.0%),andseeingandhearing(16.5%).Otherneedsthatsurveyrespondentsidentifiedwerecommunicatingwithothers,feelinganxiousordepressed,andgettingalongwithothers. Figure24.Surveyrespondents’perceptionsofwhattheyneedthemosthelpwith Source:2006HealthyDelawareanswithDisabilities2010Survey;CenterforAppliedDemographyandSurveyResearch,UniversityofDelaware3 Equipment AccordingtotheDelaware2005BRFSSsurvey,6.1%ofthegeneralpopulationinDelawareneedssomeformofequipmentordeviceduetoahealthproblem.5 IntheBRFSSretrospectiveanalysis,itwasfoundthat5.7%ofDelaware’sadultpopulationneedstousespecialequipmentasaresultofoneormorehealth problems.4Whenexaminingdifferentsubgroupsofthepopulation,theretro­Almost57%spectiveanalysisfoundthat26.0%ofalladultswhosaidthattheiractivitiesofparticipantswerelimitedduetoahealthproblemalsoneededspecialequipment.needspecialequipmenttohelpIntheHDWD2010survey,56.7%ofrespondentsreportedthattheythemwiththeirneededspecialequipmentduetoanimpairment(seeFigure25).Individu­disability.alswithhearingimpairments(81.1%),individualswithphysicaldisabilities (79.3%),andindividualswithvisionimpairments(67.2%)weremuchmore likelytoreportthattheyrequiredspecialequipmentduetotheirdisabilitythanin­ dividualswithcognitiveorlearningdisabilities(18.5%)andindividualswithmen­ talhealthconditions(16.1%). Figure25.Currentrequirementsfortheuseofspecialequipment,byprimarydisability Source:2006HealthyDelawareanswithDisabilities2010Survey;CenterforAppliedDemographyandSurveyResearch,UniversityofDelaware3 CaregiverNeeds CaregiverDemographics Manyindividualswithdisabilitiesrelyonsomeonetoassistandsupportthem Most caregivers withpersonalandroutinecareneeds.Caregiversrangefromfamilymembers, for individuals with dis­ friends,andneighborstoprofessionals.TheHDWD2010surveyfoundthatthe abilities who participated majorityofthecaregiverssupportingrespondentsofthissurveywerefamily in this survey were family memberssuchasparents,adultchildren,andotherprimaryfamilymembers members followed by (61.4%),followedbypaidprofessionalcaregivers(31.0%),andotherrelatives paid professional orfriends(7.6%).Figure26illustrateswhothecaregiversareandhowtheyarecaregivers. dividedbysubgroupsoffamilymembersandpaidprofessionals. Source:2006HealthyDelawareanswithDisabilities2010Survey;CenterforAppliedDemographyandSurveyResearch,UniversityofDelaware3 CaregiverChallenges AspartoftheHealthDelawareanswithDisabilities2010survey,interviewersinvitedcaregiverswhowerepresentatthetimeoftheinterviewtoanswerquestionsaboutcaregiving.Atotalof66caregiversagreedtoanswerques­tionsabouttheircaregivingactivities.Thechallengemostoftenmentionedwasthatcaregivingdoesnotleaveenoughtimeforoneself(39.4%),fol­lowedbythefinancialburdenthatcaregivingcreates(22.7%).Thestressthataccompaniescaregivingwasmentionedby12.1%ofcaregivers(seeFigure27). Figure27.Greatestdifficultiesreportedbycaregiversofsurveyrespondents Source:2006HealthyDelawareanswithDisabilities2010Survey;CenterforAppliedDemographyandSurveyResearch,UniversityofDelaware3 Recommendations ThefollowingrecommendationsarebasedoninformationcollectedfortheHDWD2010survey.Despitethefactthatthisdataisnotpopulation­based,thisreportindicatesthatsignificantdisparitiesmostlikelyexistinimportantareasofthehealthstatusofindividualswithdisabilitiescomparedtothegeneralpopula­tion.Thissurveyincludesadultswithabroadervarietyofdisabilitiesthanthean­nualBRFSSsurvey.Forthesereasons,thisdataandrelatedinformationshouldbewidelydistributedtoandstudiedbyallpublicandprivateagenciesandhealthcareprovidersinvolvedinthedeliveryofhealthcareandpreventativehealthservicestoDelawareanswithdisabilities.Thisconsiderationshouldincludehealthcareandhumanserviceorganizationsandproviderswhoexclusivelyserveindividualswithdisabilitiesandthosewhoservebothindividualswithandwithoutdisabilities.Therecommendationsprovidedofferguidanceandinsightintohelpingadultswithdisabilitiesimprovetheirabilitytoleadhealthierlives. Manyoftherecommendationscanbeaccomplishedwithinexistingprogramsandresourcesavailabletothegeneralpublic.Thecraftedrecommendationsneedtobecoordinatedacrosshealthcareserviceproviders,humanserviceproviders,advocacyagencies,anddirectserviceproviderswhoworkwithper­sonswithdisabilities.Theserecommendationsneedtobeimplementedwiththeconsultationofpersonswithdisabilitiesandtheirfamilies. 1. Develop a five year health and wellness plan for adults with disabilities in collaboration with the Governor’s Commission on Community­Based Alternatives for Individuals with Disabilities and the HDWD 2010 Advisory Panel. 2. Review health and wellness education, awareness, and prevention materials available from state agencies, health providers, hospitals, and other health care sources and ensure that the materials are available in formats that are accessible to all persons with disabilities. 3. Educate physicians and other health care providers about the importance of addressing secondary health conditions with persons with disabilities, pre­ venting secondary health conditions, and monitoring persons with disabili­ ties who are at risk for or have secondary health conditions. 4. Create a grant program for health care facilities to ensure physical and information accessibility of services for all persons with disabilities. 5. Develop and implement a pilot program to make dental care services avail­ able to all individuals with disabilities. 6. Support the general health care prevention initiatives of the Division of Public Health and work with the Division to ensure that disability specific in­ formation is included in prevention education materials. 7. Provide education and grant funding for local recreation and parks offices and private fitness centers to ensure that all recreation and fitness programs are accessible to persons with disabilities. 8. Develop and implement disability specific prevention education programs to address risky health behaviors, including smoking, drinking, and unprotected sex. 9. Develop and implement health prevention education programs for direct support professionals and family caregivers. 10. Develop and implement disability specific health education programs to address health concerns specific to a disability group. 11. Develop a mandatory certification and credentialing process for direct support professionals. 12. Support the effective implementation of respite care programs for families of persons with disabilities. 13. Develop and implement a systematic data collection and analysis process, such as the State’s Behavioral Risk Factor Surveillance System (BRFSS), to identify the comprehensive health and prevention needs of persons with disabilities. 14. Support the effective implementation of the Delaware Medicaid Buy­In program. References 1 U.S.CensusBureau(2006).PopulationEsti­mates.RetrievedJune8,2007fromhttp://www.census.gov/Press­Release/www/re­leases/archives/population/007263.html 2 U.S.CensusBureau(nd).AmericanFactFinder.Delaware.RetrievedMay25,2007fromhttp://factfinder.census.gov 3 Gilman,L.(2007).HealthyDelawareanswithDisabilities2010ProjectHealthRisksSurveyAnalysis.CenterforAppliedDemographyandSurveyResearch,UniversityofDelaware,Newark,Delaware. 4Gilman,L.(2006).HealthRisksofAdultswithDisabilitiesintheStateofDelaware:ARetro­spectiveAnalysisofDatafromtheBehavioralRiskFactorSurveillanceSystem.CenterforAppliedDemographyandSurveyResearch,UniversityofDelaware,Newark,Delaware. 5 CentersforDiseaseControlandPrevention(nd).BehavioralRiskFactorSurveillanceSys­tem.2005DelawareData.RetrievedMarch16,2007fromhttp://www.cdc.gov/brfss/ 6 AmericanHeartAssociation(2007).DiseasesandConditions.RetrievedonApril19,2007fromhttp://www.americanheart.org 7 CentersforDiseaseControlandPrevention(nd).BehavioralRiskFactorSurveillanceSys­tem.2004DelawareData.RetrievedMarch16,2007fromhttp://www.cdc.gov/brfss/ 8 NationalCancerInstitute(nd).TheProstate­SpecificAntigen(PSA)Test:QuestionsandAnswers.RetrievedonApril19,2007fromhttp://www.cancer.gov/cancertopics/factsheet/Detection/PSA 9 AmericanCancerSociety(nd).DetailedGuide:BreastCancer.RetrievedonApril19,2007fromwww.cancer.org 10 U.S.DepartmentofHealthandHumanServices(2006).Mammography.RetrievedonApril19,2007fromwww.womenshealth.gov/faq/mammography.htm 11 NationalCancerInstitute(nd).ScreeningMammograms:QuestionsandAnswers.Re­trievedonApril19,2007fromhttp://www.can­cer.gov/cancertopics/factsheet/Detection/screening­mammograms 12 AmericanMedicalAssociation(2005).AMAPoliciesonBreastCancer.RetrievedonApril19,2007fromhttp://www.ama­assn.org/ama/pub/category/9060.html 13 U.S.DepartmentofHealthandHumanServices(2006).PAPTest.RetrievedonApril19,2007fromwww.womenshealth.gov/faq/pap.htm 14 CentersforDiseaseControlandPrevention(2007).SmokingandTobaccoUse.FastFacts.RetrievedonApril19,2007fromhttp://www.cdc.gov/tobacco/basic_informa­tion/FastFacts.htm 15 DelawareHealthandSocialServices.Divi­sionofPublicHealth.BehavioralRiskFactorSurveillanceSystem2005Data. ANEQUALOPPORTUNITY/AFFIRMATIVEACTIONEMPLOYERTheUniversityofDelawareiscommittedtoassuringequalopportunitytoallpersonsanddoesnotdiscriminateonthebasisofrace,color,gender,re­ligion,ancestry,nationalorigin,sexualorientation,veteranstatus,age,ordisabilityinitseducationalpro­grams,activities,admissions,oremploymentpracticesasrequiredbyTitleIXoftheEducationAmendmentsof1972,TitleVIoftheCivilRightsActof1964,theRehabilitationActof1973,theAmericanswithDisabilitiesAct,otherapplicablestatutes,andUniversitypolicy.Inquiriesconcerningthesestatutesandinformationre­gardingcampusaccessibilityshouldbereferredtotheAffirmativeActionofficer,305HullihenHall,302/831­2835(voice),302/831­4552(TDD). Center for Disabilities Studies Division of Developmental Disabilities Services UniversityofDelaware DelawareHealthandSocialServices 461WyomingRoad•Newark,DE19716 24­HourTollFreeContactNumber (302)831­6974•(302)831­4689TDD 1­866­552­5758 www.udel.edu/cds www.dhss.delaware.gov/dhss/ddds/