Multiple Dimensions of Caregiving and Disability: Research, Practice, Policy PDF
Preview Multiple Dimensions of Caregiving and Disability: Research, Practice, Policy
Caregiving Research • Practice (cid:129) Policy RondaC.Talley,SeriesEditor Anofficialpublicationof TheRosalynnCarterInstituteforCaregiving Forfurthervolumes: http://www.springer.com/series/8274 Editorial Board PeterS.Arno,Ph.D. SchoolofHealthSciencesandPractice, NewYorkMedicalCollege,Valhalla, NY, USA BrendaYvonneCartwright,Ph.D. UniversityofHawaiiatManoa,Honolulu,HI,USA GilbertCleeton,Ph.D. WaldenUniversity,Baltimore,MD,USA MichaelD’Andrea,EdD UniversityofHawaiiatManoa,Honolulu,HI,USA PamDoty,Ph.D. U.S.DepartmentofHealthandHumanServices,Washington,USA DothelW.Edwards,Jr.,Rh.D.,CRC,CLCP AlabamaStateUniversity,Montgomery,AL,USA ClaytonW.Faubion,Ph.D.,CRC UniversityofMarylandEasternShore,PrincessAnne,MD,USA AlanGoldberg,PsyD,JD,ABPP PrivatePracticePsychology&DisabilityLaw,Tuscon,AZ,USA MartinH.Greenberg,MD AmericanAcademyofPediatrics,Savannah,GA,USA AndyImperato AmericanAssociationofPeoplewithDisabilities,Washington,DC,USA KathrynPekalaService,MSN,RNC,NP,CDDN MassachusettsOfficeofHealthandHumanServices,Northampton,MA,USA HenryKautz,Ph.D. UniversityofRochester,Rochester,NY,USA MadanM.Kundu,Ph.D.,FNRCA,CRC,NCC,LRC SouthernUniversity,BatonRouge,LA,USA DonaldLollar,EdD OregonHealth&ScienceUniversity,Portland,OR,USA iii iv EditorialBoard JamesF.Malec,Ph.D.,LP,ABPP-Cn,Rp IndianaUniversitySchoolofMedicine,Indianapolis,IN,USA SusanPalmerMazrui,MA FederalRegulatoryAffairs,AT&T,Washington,DC,USA NancyA.Miller,Ph.D. UniversityofMarylandBaltimoreCounty,Baltimore,MD,USA JanC.Orleck,LCSW,CCM PrivatePractice,HumanaMilitaryHealthServices,Louisville,KY,USA RandolphB.Pipes,Ph.D. AuburnUniversity,Auburn,AL,USA LilliamRangel-Diaz,CLA CenterforEducationAdvocacy,Inc.,FormerClintonPresidentialAppointee,Board ofDirectorsNationalCouncilonDisability,Miami,FL,USA MarciaJ.Scherer,Ph.D.,MPH,FACRM UniversityofRochesterMedicalCenter,Webster,NY,USA DeborahM.Spitalnik,Ph.D. Elizabeth M. Boggs Center on Developmental Disabilities, New Brunswick, NJ, USA WilliamB.Talley,Rh.D.,CRC UniversityofMarylandEasternShore,PrincessAnne,MD,USA PatriciaWalker-Hinton,Ph.D.,RN,FAAN UniformedServicesUniversityoftheHealthSciences,Bethesda,MD,USA PeggyWittman,EdD,OTR,FAOTA EasternKentuckyUniversity,Richmond,KY,USA ThedaZawaiza,Ph.D. Office of Elementary and Secondary Education, Organizational Structure and Offices,Washington,DC,USA Ronda C. Talley (cid:129) John E. Crews Editors Multiple Dimensions of Caregiving and Disability Research, Practice, Policy 2123 Editors RondaC.Talley,PhD,MPH JohnE.Crews,DPA WesternKentuckyUniversity Div.DiabetesTranslation BowlingGreen,KY,USA VisionHealthInitiative(VHI) CentersforDiseaseControl&Prevention Atlanta,GA,USA ISSN2192-340X ISSN2192-3418(Electronic) ISBN978-1-4614-3383-5 ISBN978-1-4614-3384-2(eBook) DOI10.1007/978-1-4614-3384-2 SpringerNewYorkDordrechtHeidelbergLondon LibraryofCongressControlNumber:2012940532 © SpringerScience+BusinessMediaNewYork2012 Thisworkissubjecttocopyright.AllrightsarereservedbythePublisher,whetherthewholeorpartofthe materialisconcerned,specificallytherightsoftranslation,reprinting,reuseofillustrations,recitation, broadcasting,reproductiononmicrofilmsorinanyotherphysicalway,andtransmissionorinformation storageandretrieval,electronicadaptation,computersoftware,orbysimilarordissimilarmethodology nowknownorhereafterdeveloped.Exemptedfromthislegalreservationarebriefexcerptsinconnection withreviewsorscholarlyanalysisormaterialsuppliedspecificallyforthepurposeofbeingenteredand executed on a computer system, for exclusive use by the purchaser of the work. Duplication of this publicationorpartsthereofispermittedonlyundertheprovisionsoftheCopyrightLawofthePublisher’s location,initscurrentversion,andpermissionforusemustalwaysbeobtainedfromSpringer.Permissions forusemaybeobtainedthroughRightsLinkattheCopyrightClearanceCenter.Violationsareliableto prosecutionundertherespectiveCopyrightLaw. Theuseofgeneraldescriptivenames,registerednames,trademarks,servicemarks,etc.inthispublication doesnotimply,evenintheabsenceofaspecificstatement,thatsuchnamesareexemptfromtherelevant protectivelawsandregulationsandthereforefreeforgeneraluse. Whiletheadviceandinformationinthisbookarebelievedtobetrueandaccurateatthedateofpublication, neithertheauthorsnortheeditorsnorthepublishercanacceptanylegalresponsibilityforanyerrorsor omissionsthatmaybemade.Thepublishermakesnowarranty,expressorimplied,withrespecttothe materialcontainedherein. Printedonacid-freepaper SpringerispartofSpringerScience+BusinessMedia(www.springer.com) Tomymother,RondaMcCoyTalley,who educatedhundredsofchildrenwithspecial needs.Usingherintuitionofchildren’sneeds andherskillsasamasterteacher,shetaught childrenwhootherssaidcouldnotlearn.With hergentleandgenerousspirit,sheshowed compassionwhilebringingforththebestin eachstudentwhowalkedthroughher classroomdoor. RondaC.Talley ToNancy,Kate,andRipsi JohnE.Crews Foreword Fromitsinceptionin1987,theRosalynnCarterInstituteforCaregiving(RCI)has sought to bring attention to the extraordinary contributions made by caregivers to theirlovedones.Igrewupinahomethatwasregularlytransformedintoacaregiving householdwhenmembersofmyfamilybecameseriouslyill,disabledorfrailwith age,somyinterestintheissueispersonal.InmyhometownofPlains,Georgia,as inmostcommunitiesacrossourcountry, itwasexpectedthatfamilymembersand neighborswouldtakeontheresponsibilityofprovidingcarewheneverillnessstruck closetohome.Deliveringsuchcarewiththelove,respect,andattentionitdeserves is both labor intensive and personally demanding. Those who do so represent one of this nation’s most significant yet underappreciated assets in our health delivery system. When the RCI began, “caregiving” was found nowhere in the nation’s health lexicon. Its existence was not a secret but rather simply accepted as a fact of life. Indecidingonthedirectionandprioritiesofthenewinstitute,weconvenedgroups of family and professional caregivers from around the region to tell their personal stories. As I listened to neighbors describe caring for aged and/or chronically ill or disabled family members, I recognized that their experiences reflected mine. They testified that, while caregiving for them was full of personal meaning and significanceandcouldbeextremelyrewarding,itcouldalsobefraughtwithanxiety, stress,andfeelingsofisolation.Manyfeltunpreparedandmostwereoverwhelmed at times. A critical issue in the “field” of caregiving, I realized, was the need to betterunderstandthekindsofpoliciesandprogramsnecessarytosupportthosewho quietlyandconsistentlycareforlovedones. WiththeagingofAmerica’sBabyBoomersexpectingtodoubletheelderlypop- ulationinthenext20years,deinstitutionalizationofindividualswithchronicmental illnessesanddevelopmentaldisabilities,arisingpercentageofwomeninthework- force, smaller and more dispersed families, changes in the role of hospitals, and a rangeofotherfactors,caregivinghasbecomeoneofthemostsignificantissuesofour time.Caregivingasanareaofresearch,asafocusandconcernofpolicy-making,and asanareaofprofessionaltrainingandpracticehasreachedanewandunparalleled levelofimportanceinoursocietyandindeedglobally. ix x Foreword Aswesurveythefieldofcaregivingtoday,wenowrecognizethatitisanessential componentoflong-termcareinthecommunity, yetalsoapotentialhealthriskfor thosewhoprovidecare.Thebasicfeaturesofapublichealthapproachhaveemerged: afocusonpopulationsofcaregiversandrecipients,trackingandsurveillanceofhealth risks,understandingthefactorsassociatedwithriskstatus,andthedevelopmentand testingoftheeffectivenessofvariousinterventionstomaximizebenefitsforboththe recipientsofcareandtheirproviders. Theaccumulatedwisdomfromthisworkisrepresentedinthevolumesthatmake uptheSpringerCaregivingSeries.Thisseriespresentsabroadportraitofthenature ofcaregivingintheUnitedStatesinthetwenty-firstcentury.MostAmericanshave been,arenow,orwillbecaregivers.Withoursociety’sincreasingdemandsforcare, wecannotexpectahighqualityoflifeforourseniorsandotherslivingwithlimitations duetoillnessordisabilityunlessweunderstandandsupporttheworkofcaregivers. Withoutthoughtfulplanning, intelligentpolicies, andsensitiveinterventions, there istheriskthattheworkoffamily,paraprofessional,andprofessionalcaregiverswill becomeintolerablydifficultandburdensome.Wecannotletthishappen. This volume examines the breadth and depth of caregiving. Readers will gain an appreciation of the fact that caregiving represents a process that occurs across the life span of those who need care and, in many respects, across the life span of those who provide it. Caregiving is received as well as provided by the young and the old; those involved represent all races, genders, and economic groups. Its complexityisreflectedacrossfourbroadareas:(1)thecharacteristics,demands,and trendspertainingtocaregiversandcarerecipients;(2)thepracticeofprofessionals who serve caregivers; (3) the public policies that support caregivers; and (4) the relationshipbetweenthequalityoflifeofthecaregiverandthecarerecipient.The structureofthisvolumeprovidesreaderswithinsightsintoeachoftheseissues. Readersofthisserieswillfindhopeandevidencethatimprovedsupportforfamily andprofessionalcaregiverslieswithinourreach.Thefieldofcaregivinghasmatured and, as evidenced in these volumes, has generated rigorous and practical research findings to guide effective and enlightened policy and program options. My hope isthatthesevolumeswillplayanimportantroleindocumentingtheresearchbase, guiding practice, and moving our nation toward effective polices to support all of America’scaregivers. RosalynnCarter Contents 1 Introduction:MultipleDimensionsofCaregivingandDisability..... 1 JohnE.CrewsandRondaC.Talley 2 FamilyDynamicsandCaregivingforPeoplewithDisabilities ....... 11 SusanH.McDanielandAnthonyR.Pisani 3 FeelingsofFamilyCaregivers ................................... 29 YvetteGetch 4 Education,Training,andSupportProgramsforCaregivers ofIndividualswithDisabilities................................... 45 SharonGoldsmith 5 ParentCaregiversofChildrenwithDisabilities.................... 67 KarenKuhlthau 6 NeitherPreparedNorRehearsed:TheRoleofPublicHealth inDisabilityandCaregiving..................................... 83 JohnE.Crews 7 Race/Ethnicity,Culture,andSocioeconomicStatusandCaregiving ofPersonswithDisabilities...................................... 99 PaulLeung 8 FaithandSpirituality:SupportingCaregiversofIndividuals withDisabilities................................................ 117 WilliamGaventa 9 FamilyCaregiversandHealthCareProviders: DevelopingPartnershipsforaContinuumofCareandSupport ..... 135 TimothyR.ElliottandMichaelParker 10 LegalIssuesRelatedtoCaregivingforanIndividualwithDisabilities 153 FrankG.Bowe xi
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